Update 8/26/04
After writing Sunday's update, I went to bed and prayed that if Samuel did not need the VA shunt, God would give us an unmistakable sign. Of course, we got up, no sign. Because I was concerned that he would get dehydrated without being able to eat or drink, I ran Pedialite into him all night up until the time we had to stop all fluids. I did not want him crying for water the whole way in. But, Samuel was miserable for some reason that morning. Mark took the kids to his parents before taking us to the hospital so the luggage would have a place to go comfortably. We ended up leaving a bit later than anticipated and immediately hit traffic on the hiway. I prayed that it would all be moved from us so we could get there on time. I thought about how I prayed the entire way from Tacome to Seattle while in the ambulance with Samuel when we transferred hospitals. Praying without ceasing seemed to help then as our prayers were answered in a big way by going to Childrens. So I tried to do that on this drive too, but my mind was mostly numb. The traffic did move out of our way and we got there right on time so I took this to be a good sign for the day. Samuel, however, got more miserable upon arriving and we just assumed it was because he hates it there too. We had to wait about 45 minutes before being called back to the holding area. There, the nurse did his vitals, etc. She could not get his blood pressure due to him being so upset. He ended up puking all over because he was so upset in fact. She took his temp which was weird, 96.1F and asked if he always ran cool. After months of nonstop fevers, thinking of him as running cool seemed wrong. They asked how we wanted him to go to sleep and everyone agreed that they would not access his port since they were not sure what to expect with the surgery.
Dr. Avellino came in to go over the surgery with us. I could tell he was a bit distraught from the start. He told us he talked to the cardiologist last night over the phone and it was determined that the cardiologist would be present for the surgery. They were going to look at his atrium again with a scope inserted through the esophagus because it would give a more accurate picture of the clot issues. This did not thrill me but they wanted to be safe. He told us that if the clot was big, they would not proceed. If the clot was small, they would continue with the surgery. He left telling us he was sorry but lets be "hopeful." There was no other choice for the shunt placement.
Dr. Lee came in with the consent form. It was blank. It appeared no one knew exactly what would be done. Either nothing, or they may have to pull out the port and move it, or put the shunt down on the opposite side of his head making more holes, more scars, etc. But in any case, the entire VP shunt was coming out. We were not impressed and wanted to find out why the WHOLE thing has to go when we know the thing works. Apparently the risk of infection was great and it has been messed with too many times already. Samuel was having a fit the whole time and so was Anna so hearing and understanding was difficult at best but we signed the form. It was decided that Samuel would get the gas mask, go off to sleep and they woul start an IV after that. I alerted them to the fact that he has an ileostomy and would need a bolus of fluids as soon as possible and they noted that. When the surgery was planned, I asked the NP if we would be admitted the night before given Samuel's history and no one thought that was necessary. I found it odd that no one would draw labs on a cancer patient receiving chemo prior to surgery but they did not. The nurse asked us if all our questions were answered and we weren't sure. She told us she would call us with updates on what would be done in the OR after they looked at his heart.
We went into the room next to the OR and they prepped everything and got ready to put Samuel to sleep. He was still crying. Mark was holding him and I had a horrible feeling at this point since no one really knew what was going on or what they were going to do. I asked Mark to hold him and prayed in his ear as I always do before he goes back. I always tell him that Jesus will be with him and hopefully Jesus will allow Delma to visit him in his sleep. A nurse took Anna for us so I could hold Samuel in my lap as he went to sleep. He wanted me to sing him Twinkle Twinkle and I really tried to but I was crying. He was crying as they held his mask on. Words do not express how awful I felt at that moment. He trust me, why did I feel as if I was doing him wrong again? We left him and went to get lunch. I was glad I had Anna to hug then because I was so done with this crap at that moment. Knowing that Samuel would be in pain and misery afterwards again made me sick. Neither of us were impressed to have the entire shunt taken out
We tried to eat lunch but the cafe sucks so we ate lightly and tried not to puke ourselves. Mark kept threatening to stab me with a fork if I did not stop crying. We managed to get Anna asleep and decided to try to find a quiet place to wait. We were paged by the surgery desk and went to get our call. The nurse told Mark they were proceeding with the shunt and it would be on the same sid, the prot would stay. So I guess we were okay about knowing that but still sick.
We went to the Parent Resource room and I sent this note to my group....
Samuel is in surgery and I am sick. This has been the worst one yet. Dr. Avellino was upset about the clot shoing on the echo from last week so they did an esophagus sonogram of his heart to check. Apparently it is not a big deal,as they are progressing with the VA shunt and a cardiologist is with them now JIC. When we left him no one knew what they would do. If the clot was big, he would not have had surgery at all. As it is now, they are pulling the ENTIRE shunt out maning more cuts stitches and pain and putting a new one in. My baby will be a sad man tonight and I have just had it. Our old shunt at least functioned right in the head part so it is annoying that they would pull it all out. Apparently the infection risk is too high not to. Mark keeps threatening to stab me witha fork if I don't stop crying. They said there is still a chance that if there is a clot, they could dislodge it but there is no other choice. Right now, we don't even know the4 status of the clot, whether it is there, not there. I held him and kissed him goodbye and felt like I was doing it for the last time in a way which is probably why I feel so horribly awful right now. I am sure I am just worrying for nothing but this feels incredibly awful. Thanks so much for your continued prayers. I will update or have Kristina do when we know more.
I don't know why I sent such a disturbing note and I felt bad after doing so. I guess I thought that if anyone could read it and pray, that would be helpful. I did not know then, but those prayers surely saved Samuel's life.
We found a deck of cards and decided to pass the time playing. I think 45 minutes passed and we were paged again. This seemed like a very short amount of time to us. We went back to the desk and they told us that they were finished and we could go to the waiting room and wait for Dr. Avellino. I think we were there about 30 minutes which seeme odd to me. I wondered if something had happened if anyone would tell us at the desk of if we would just wait and wonder. I told Mark over and over, "I want my Pooper."
Finally Dr. Avellino showed up and pulled up a chair. The fact that he sat was not good already. He told us that he wanted to let us know what happened, why they did not proceed with the surgery. Apparently, after Samuel was out, his blood pressure started dropping to the point of nonexistence. His heartrate went into an irregular pattern and he turned gray. The anesthesia Doc told us later that she tried to start a few IV's but none would take because his veins are so messed up. She thinks this is because he has been so sick with no real recovery time. So I have counted five area's where IV's were attempted. They finally accessed the port and drew labs and gave him a bolus of fluids rapidly. Dr. Avellino says that this is when his heartrate became irregular. When they were unable to get a blood pressure they started an aterial IV to get a BP. Apparently they became frightened that they dislodged a clot so they cancelled the entire operation and sent him to the ICU intubated just in case. A later discussion with Kristina and my Mom brought more questions as to what actually happened in the OR. I don't think we still have the full story and I plan to get the record. My mom says his blood veins would have been weak due to dehydration and the anesthesiologist should have known immediately. And she SHOULD have because I told her he would be needing a bolus of fluids right away due to his ileostomy. My mom also mentioned that you turn gray just before your heart stops. This would concur with his irregular heartrate. I asked for specifics and no one would really elaborate. Further, when we went in yesterday for his abdominal tap, the anesthesiologist I had, one which we have had for a previous tap, was very scared to put him out. In fact, the entire staff knew what had happened and everyone was VERY leary. They even asked me if I thought he really needed this tap. So I believe that something more hapened than we know. A lot of the OR nurses came to tell him hi and remarked on how "good" he looked yesterday. The conclusion that they came to after a few hours of deliberation was that his electrolytes, mainly sodium and potassium were very low. That pared with dehydration caused the events to happen as they did. And I was and am still livid because up until this point, NO ONE took the fact that he has an ileostomy into consideration when making him NPO before a surgery. Without a colon, he will loose sodium and potassium faster because it is in the colon that these minerals are absorbed. Plus, without a colon, you become dehydrated much faster. These people are the so called "experts" they should know this, they should not have be to reminded by the lay person and my child's life should not have to be put in jepordy because of their stupidity. I had asked the NP previously if he needed to be admitted the night before the surgery and no one thouight that was necessary. I guess when they drew labs in the OR and realized his electrolytes were off, they gave him a bolus of potassium and sodium as well as fluids and he imporved immediately, imagine that.
Dr. Avellino told us he was "superstitious" after that event. "Obviously someone upstairs did not want this surgery to happen today," he said. "Let's not cut corners, we want to be extremely safe, I have had patients who had a revision planned that kept being put off until they just did not need it anymore. Maybe Samuel does not need this." He was concerned that the shunt was still infected and tapped it during the supposed surgery to check. Apparently sometimes these things do not show up for 4-6 weeks but that could be why it is not being absorbed as well. He also wanted a shunt series X-ray to be sure the shunt was still whole as well as a chest X-ray. And then Dr. Avellino told us that the anesthesiologist did not feel comfortable sending him to the ICU without the breathing tube so he was still intubated and they ordered that for 2-3 hours to be sure that he was okay.
My conclusion is that after that, Dr. Avellino is spooked. Kristina's conclusion is that they were not prepared and were flying by the seat of their pants and when thing started going wrong, they freaked and threw in the towel. My conclusion is that God stopped this the only way he could. Dr. Avellino told us that very few operations are stopped midstream. And now I pray, GOD FIX THIS so we don't have to take him back.
And so after talking to Dr. Avellino, we were led to believe that Samuel was in a dire state. We were uminpressed to be in the ICU again. Anyone following our story knows we HATE the ICU. So we were incredibly upset because we had no idea of what we would do. Anna can't stay in the ICU and I could not drive home and let Mark stay. The kids were at his parents and they were able to stay the night there at least. We decided we could just get a hotel but that still left us with no way be be here at all times.
We headed to the ICU waiting and Mark told me to go in first as he was so mad that he would just GO OFF if he went in. So I checked at the desk because you have to ASK to see your own child and was told I could not go in yet as they nurse was still getting report. I was ticked off by this and already being mad, this was not a good situation. The person at the desk told me 5-10 minutes and she would come and get me. About 15 minutes later, no one showed up. Then x-ray showed up and I told Mark this was probably for Samuel so I got up to ask again if I could go in. THis time I was told yes and I asked what room and told some number and bed 2. Bed 2? He was in a double room? But then the person said it was not occupied. I grabbed my pack of dipes and a Teletubbies VHS and went in.
I was fully expecting to see Samuel very sick, or looking very badly as we were told he looked in the OR. But when I came in, I found the direct opposite. X-ray was there and I had to leave the room upon entering for a minute but when I came in, I saw the most horrible thinkg I think I have witnessed this entire last four months. Now let me stop and say that I have seen him intubated many times. All at Mary Bridge but at that time, he was "snowed" as Kristina likes to call it. He was out of it, or only partially awake, but seemed comfortable. When I came in, he was fully awake, tied spread eagle in the bed, tubes and crap everywhere, gagging and puking and choking. When he saw me, he tried to get to me, but could only move his head. I wanted to cry, scream and pull it all out myself. His nurse, Anita introduced herself. She could not leave his side as he just puked every 5 seconds. He literally did not stop gagging. I asked her why they weren't pulling the tube. Normally they pull it when the patient is awake enough to gag on it. She told me that it was ordered not to be pulled until after a few hours after they decided his heartrate and BP was normal. An RT was there and he even commented that they needed to pull it. I was irate. I asked Anita if she thought this was ridiculous and she agreed. I looked up at Samuel's HR and it was in the 180's. Every BP which happened every 5 minutes was so high that it kept the machine dinging all the time. I told her that he was scared to death and if they wanted to see normal numbers, they needed to pull the tube. And I said nothing quietly. I was yelling at everyone. Samuel was crying. You cannot talk on a vent but tears were coming out of his eyes and he was trying to hold my hand and thrust his head toward me. I felt like screaming, running into the hall and yelling until someone came in to help him. I could not believe he would have to be left like this for hours. Anita tried to give him a sedative which did nothing for him. I turned on his video thinking it might help, but it did not. And poor Samuel was miserable and here he trusted me and look what happened. A few minutes later a Resident appeared and Anita told me that she was the person I needed to ask about the tube. This hag told me that he had to keep it in for two to three hours. I asked her to look at him. He is miserable. And she told me that breathing tubes are not comfortable. I wanted to shove it down her throat at that moment. I told her I would not have a problem with it if he was "out" but he was not and they needed to get it out, it was unacceptable. She made some stupid comment about how bad it would have been if he was in the OR and died. Then I wanted to slap her. My voice was never below a yell this entire time. I told her that if they dislodged a clot, the tube would not save his life so it was pointless except as a torture device. I asked this hag if she knew what he was vomiting when his stomach was "supposed" to be empty and she aid she did not. I informed her that the fluid in his abdomen was pushing everything up and he would continue to puke until they got that tube out. I told her, I wanted it out. She said that would nto happen, and I informed her that it would happen NOW. SHe ran away saying she would bring in the Attending. I said, "you do that." I told Anita that I am normally NOT a hag, but this was ridiculous. She again agreed. Fortunately she had no other patients because she had to continue to suction him every few seconds as he continued to puke and choke on it. He was laying flat so he would puke and then eat it. I asked if we could at least raise the bed so when he puked it might come out rather than go back down his throat. Words cannot even express how mad I was seeing that. Your prayers probably kept me from killing them all. And I wanted to. I am honestly surprised that I did not get kicked out of there. I was waiting for that.
The attending showed up then and introduced himself and told me he knew Samuel. I said, "Who doesn't? When can we pull this tube?" He looked at him and remarked at how awake he was and said they could do it right then. Finally, someone with a brain. The RT was there in less than a minute and pulled it. We untied his arms. Of course Samuel could then cry and he did. He also stopped puking and his HR and BP came down to normal. Amazing. Idiots!!! I was relieved. I am amazed at how forgiving my boy is. After a few minutes of hugging and kisses, he was a happy boy watching his show. Seemed to forget the entire thing. Of course, I will never forget it. Again, here is a reason why you HAVE to be there at all times. I am sure had I NOT been there, they would have just followed orders and let him be miserable for hours. How many kids do you think suffer because their parents are not there to stop the stupidity. I am STILL pissed off.
After that Samuel's vital signs were great. Absolutely NO cause for alarm. Anita told me that Anna and Mark could come in. They did not allow Anna in the time before apparently because of Samuel's MRSA so that was at least nice. Samuel was a happy boy when they arrived. I told Mark about the situation and if he thought he was mad before, he could be glad he did not go in to see it. He was talking with a Social Worker who was kind enough to give us an ICU sleep room so we did not have to leave the hospital for the night.
I asked Anita if we could try to get Samuel our of the ICU since obviously he was fine. Amazing how replacing some fluids and minerals helped him out. She said she would check but when the Neuro Surgery team arrived they said absolutely not. They were still spooked and told us that was happened in the OR was bad. So we were stuck there. Mark decided that he would stay with Samuel and Anna and I would sleep in the "closet" as we named the sleep room. This was good as my contacts were like sand paper and I wanted to take them out. Fortunately we ate lunch that day because we did not get dinner except for some candy bars Mark bought earlier.
And then, to top off our night, they moved another kid into the room. I was again mad, not that I ever really stopped being mad, but I got madder. He was probably 5-6ish and came in with tape over his eyes. He was also intubated but I notice as soon as he was gagging they removed it. Then he was crying, probably because he could not see and was scared. The nurse he had was talling him "Momma's coming." I commented lound enough for everyone to hear, "I hope Momma is coming and she is not lying to him. Further I hope Momma is not sitting in the waiting room waiting to be told to come in and no one bothers to do so." Mark told me to shut up. About 10 minutes later, Momma did show up. This little boy spent the majority of the night puking as well. His Momma only stayed about 30 minutes before leaving for the night. And his nurse and docs did not leave him alone the whole night. He spent the majority of the night crying from the torment. And I know they are doing their jobs but I just wanted to help this poor boy. I could not believe the Momma would just leave him 30 minutes after he came back from surgery to have to cry and puke all night alone. When you are a kid and feel like that, who do YOU want? She left about 8pm and arrived about 8am. Of course his crying disturbed Samuel and upset him. The next day we realized that the room next door was unoccupied and were again mad that no one put us there. Mark was up all night.
The next day, they did the shunt series which showed the shunt to be fine. They came in and did a sono to see his abdomen. Mark saw the fluid but it was not all over but instead in one pocket. Samuel still did not seem to have acute symptoms of being full. A radiologist looked at the sono and said that it was equally as full if not more so than the last tap. We disagreed. They insisted, we still disagreed. They had scheduled a tap of the abdomen the next morning at 9am. We could stay another night on the Onc floor and do it first thing in the am. I had to get out of there. There was NO WAY I was staying. I told them to find a midday time and have another radiologist look at the sono just in case we did not have to come. So finally we were allowed to leave which was good because I had to apologize to the day nurse we had for being extremely rude to her. As we left the ICU, the Neuro Surgery team came in and asked incredulously "Is he going HOME?" Must have been bad in the OR, sure wish I knew.
Dr. Avellino said he was happy just watching and waiting at this point, he is still superstitious. I asked everyone about the clot which was "supposed" to NOT be a big deal but as soon as they thought they might have dislodged it, we were rushed to ICU. I told them I was taking names of who all said it was fine so if it does in fact dislodge and kill him, I will know who to sue. I am sure they all think I am such a hag. Our Onc came in and I told him we have a few "problems". I told him we needed a GI doc with some sense to help us with the feeling, blokage, ileostomy issues. I asked him about the clot, I told him we were in the ICU for NOTHING, etc. He left showing me the "I surrender" sign because I guess I came at him with some very pointed questions he had no answer for. I am sure he hates me too. Hopefully not, because I like him, but this fiasco was ridiculous. I don't know how I will take him in again if he needs the VA shunt so I pray that this was all divine intervention. Now the protocol is that when Samuel comes in for any outpatient surgery, etc. he is immediately hooked up to IV fluids and labs are drawn to check electrolytes.
We ended up going back in yesterday for a tap. The radiologist who did the first tap where they took 2.5 liters looked at the sono and said they could tap. We were all sick yesterday so it was pretty miserable. Kaysha and Daniel slept the entire drive up and back if that tells you anything. Anna cried almost the whole drive up and Samuel creied about the whole drive home. Everyone associated with the OR knew Samuel. The new protocol was instilled. He was hooked up to fluids and electrolytes were drawn. This day he was fine. The anesthesiologist told me she was told of the occurance two days back and a bit leary. I told her I honestly believed it was a fluke thing or divine intervention. He has had 8 surgeries under general and all have been fine. He has had gallons of Proprphol and been fine. Further, the minute they balanced his fluids, he was fine. She was still leary but took him back and told me she would not ever take her eyes off him. This lady is so empathetic to our situation. She not only remembered me, but asked where Anna was and told me she was impressed with how I keep it together being here all the time. I told her she should have seen me two days ago. I was NOT keeping it together.
I felt fine about this proceedure. Nothing like I felt the day before. Everything of course, went fine. They tapped 850cc's. We did not think it would be that much, but it was still lower than the last tap where they took 1050cc's on day 5.5. We made it to day 6.5 and they took less so we are hopeful that his tummy will start keeping up with the fluid output and he will not need a VA shunt. I don't know how I will take him in for that if we do need one. I think for now, everyone is okay with the taps which if they become farther apart and less acute for Samuel, will I guess be okay for now.
He came back from the tap a hungry happy boy. I am so amazed at how he just takes it all in stride and continues to forgive us for sending him off with strangers. You would think that after 4 months of diong this, I would be used to it, but I am not. We have now four blissful days at home. We are all still sick with a cold so we will enjoy some resting time. Samuel slept amazingly well last night. So we finally got a little rest. I just need as much time away from the hospital as possible. I did manage to be somewhat pleasant yesterday but I just don't understand why so many children have to suffer. I hate it. I am ready to get off this roller coaster. I have really had enough. We all have. None more than Samuel. We are done. We are beyond done. Lord, can you give us some rest? Please? Haven't we had enough? How much suffering should one child have to go through? Samuel did not do anything to anyone. He is the sweetest little boy who amazes me with his resilliance. Lord, we have had enough. End this the way you ended the surgery before it began. Please do not let Samuel's suffering this week be for nothing. In the Name of Jesus, I pray and everyone reading this now AGREES that enough is enough, AMEN.
Thanks to everyone who prayed, fasted and worried about us. It was not in vain. Your prayers surely saved his live and kept me out of jail I am sure. Much love to you.
Update 8/22/04
We are finally better today. Yesterday was so so for us both. We wanted to eat but were afraid to. We actually put a dent in the housecleaning today. I can see the floor in ALL areas of my room. Mark and I got everything put away for the first time since I got home for the 11.5 week stay which is now one month ago to the day. I also cleaned out Samuel's clothes and got rid of a lot. Pretty easy to go through when you know he won't be able to wear the majority of it. So now we can find our clothes and his too. Thank you to all those who have sent him outfits both new and second hand, these are great! He really really likes to wear clothes. The living room and kitchen are pretty clean as well. So maybe when I come back home again from this next trip, the house will still be clean instead of a disaster area in every room.
Samuel had a lot of fun in the walker yesterday. The day we were all sick he wanted to get in it, but only sat a few minutes before he tired and his head was very very wobbly. Yesterday he looked 100% better controlling his head very well. And he even scooted himself around the kitchen a bit and seemed overjoyed to be able to move himself without one of us carrying him. He lasted probably a good 15 minutes before asking to be in the bean bag again. This was the first time he was able to sit alone by himself without us helping him. And without crying. It was so incredible to watch. Just like a new baby doing it for the first time, only better because there was a time we did not even know if we would bring him home from the hospital alive.
His abdomen does not seem to be pooling up as quickly this time and of course I am looking for an excuse to NOT go tomorrow. It always seems as if he is doing so well both physically and emotionally and then a surgery has to occur and he goes backwards for awhile. Probably why I drag my feet on a day like today wishing it would all go away. I cannot believe I have to send him off again. The VA shunt would not be nearly as daunting to me if we hadn't already BTDT. Only then the shunt itself was not working and at least now, it is, it just won't absorb in the abdomen. So while I really don't want to go in, I pray this is the end of the shunt revisions at least until he grows so much that they have to lengthen the tube, and then of course, that is ANOTHER surgery. Or maybe we will get lucky and the Hydrocephalus will just be gone and he won't need a shunt at all.
I hope this surgery will solve the ileostomy blockage issues as well. Samuel has had nothing but problems with the foods he wants to eat stopping him up and making him miserable. It is hard to tell if this is a swelling abdomen issue or a intestinal issue so at least we will be able to rule out the CSF causing it after tomorrow. He had a partial blockage again yesterday and was miserable. I spent the eve looking up different blockage resolving treatments and found many adults posting on message boards about their experiences with an ileostomy so that was nice to read since Samuel isn't discussing it. If you point to the bag and ask him what it is, he will say it is Poo Poo. So he at least knows that. After a night of a pedialite drip he finally peed after 24 hours of NOT peeing and also resolved the blockage. He was a happy man today. Of course the first thing he asked me for was cheese which I believe to be a major contributor to the blockage so I took Monika's advice and made him so homeade cheese and pototoe soup. He liked it and ate a bit. I strained the rest and will put it down his tube over the next few days or so. Tonight he has firmer poop coming out rather than water so that is good. Something worked. We are still trial and erroring the feeds though. Because he has no colon, he needs a lot of extra liquids which he is not getting. And his CSF draining and not absorbing is just more fluid loss so when he gets watery poo coming out into his bag, I get concerned really fast. At least with the VP shunt, that fluid will be absorbed by the bloodstream and won't be lost. That should help a bit. And while this guts can be hooked up later down the road, both of these things will be problems that he will have to deal with for his entire life. That is the part that is so irritating. And then I start thinking of chemo to go with it and want to be sick. So I resolved today to think of things one day at a time rather than trying to figure out how it all plays out because I could get the flu all over again if I do that.
Samuel had a happy day today! I told him "Good Morning" today and he said "Good Morning" to me which was really cute. We asked him if he wanted to go to Fred Meyer and he said okay, he was ready. Before all this happened, I could not even mention going anywhere to him or he would be at the door trying to get out. And we would not dress him until just before leaving or he would just scream at the door. He got excited like that today. He was very happy to get out and did not cry when people noticed him this time. He just turned his head away. But he certainly remembered the bakery because when he got there he snatched a cookie from the nice lady and gobbled it up. That was really cool. We went to get lunch out and he ate some french fries and drank some of my Hi-C. Mark wants to try to get him out every day so he will remember what he used to do. And maybe he will want to eat too.
Last night he and Anna sat together and she yelled at him and he talked to her. If you listen in, he has entire conversations with himself and her too. I need to hide a video camera in the room to catch it. I don't think he will do it with me present. Anna is so cute as she tries to talk to him and she just watches him and coos. They usually spend the first few hours of the day together freeing me up to do something. But usually I just sleep becasue I am NOT a morning person.
Speaking of morning, I guess I need to get to bed. Tomorrow I won't be able to sleep in. I did not pack tonight but cleaned our rooms instead. I even got to those wool pillow case covers I have been wanting to make for months now. Although every pillow has been puked on so many times now that I need to throw them all out, get new ones and keep them covered. I hope and pray tomorrow goes smoothly. I don't want to put him through this again but there is no other way. Doesn't mean I will feel any better as I see him off. It is actually worse now that he can scream my name as they take him away. It was horrible to leave him when he did not talk because I always knew there were words in there but hearing him cry and call me makes me cry too. I don't know if I have ever watched him go to surgery without crying in Mark's arms. Next to God, he is my rock. The only thing worse than living through this situation would be If I had to do it without Mark. But I still hate to see him leave me, even if it is for one night. I think I just fear that the avalanche of catastrophes we watched happen to Samuel at Mary Bridge will always haunt me. Anytime we have a proceedure, surgery, even chemo I fear that something like that will happen again. We have been lucky to get out of the vicious cycle though not entirely over this last month but I always go in to the hospital half expecting the worst. Or maybe I just think of it on the drive in. I really believe in my heart that if we had gone to Seattle in the first place, most of these things would not have happened at all since they are so proactive in dealing with symptoms before they become problems. And our surgeon, Dr. Avellino told me he was also praying for Samuel. So hopefully I will get there and feel hopeful like I normally do. Perhaps it is that hidden looming thought of doom that makes me so anxious to get Samuel released from the hospital as soon as we can get out. For some reason, I guess I don't think the worst would happen here. Please remember Samuel tomorrow in your prayers. His surgery time is 12:30pm PST. Pray we get our favorite nurses so the stay will be more of a reunion of friends than a royal pain. Many many thanks, hugs and love to you all for your love and prayers tonight, tomorrow and always.
Update 8/20/04
This is the 4 month mark of this disaster. I guess it seems right that on this day we should ALL be sick. I stayed up with Daniel last night until 4am when I started feeling icky. By morning, 7am, Mark and I were both fluish. I went back to bed each time Anna did but it was pretty miserable. I got better toward midday other than a raging caffine headache. But then I went downhill fast and even had the displeasure of puking, ugh! Could this nightmare get any worse? And no one wants to come help out when you have the flu since they will get it so we were all miserable. Samuel was a happy boy however, for most of the day, thankfully because if we had to baby him all day, this surly would have been even worse. We now wonder if he was sick yesterday with the flu since draining him did not seem to give him the usual relief and he puked and was generally uncomfortable all day. He ate a Pop Tart and some Ritz Peanut BUtter Crackers today for the first time which was good because both of my food pumps died last night. One food bag broke and saturated the pump motor so that one is toast. It would not stop beeping or turn off so I threw it out on the front porch. The other works marginally okay but had nothing but flow problems all night. I was so out of it I could not even problem solve it. I finally figured out to flush Sam's NG as it was clogged. Poor Daniel had it from both ends at once. He was miserable and up all night so he layed around most of the day today. Kaysha was sickly a few days ago so was a big help to me with Anna, thank God or I would have never made it through the day. I pray I got to bed for an uninterupted night and wake feeling like myself. Nothing like feeling like absolute crap to make you thankful for the days you just deal with someone else feeling like crap. This is the kind of day that feels entirely like a cruel joke.
The VA shunt is scheduled for Monday. Apparently the clot is small and on the Port so they don't think it will be an issue. Hopefully we can make it until then. Samuel was acting uncomfortable already later tonight but that could have just been from eating junk. I asked the NP about the clot and shunt and reminded her that we wanted to take him home from the hospital alive, not dead because it dislodged and went into his pulmonary artery and killed him. She was taken aback for a second but agreed that that was what they wanted too and that the shunt has to be moved period. We are to be there at 11:30am with a surgery time of 12:30pm and we will be admitted for hopefully just ONE night after that. Maybe that is why I am sick. I pray this is the LAST surgery for awhile and that we can get back to just rehab stuff and maybe cleaning the house a bit since now after today it is a real disaster area.
Samuel got into Anna's walker today and played for about ten minutes before tiring. I wanted to take a picture but felt too awful so will try to get one tomorrow if we are better. He enjoyed it a lot. His head control still leaves a lot to be desired but after the initial fit of being placed in the chair, he was a happy boy.
I am off to bed in hopes of not feeling like puking all night. Thanks to all for the kind notes today and your continued support of our family and love for Samuel.
Update 8/19/04
At Childrens this morning....
They took another liter from Samuel's abdomen first thing this morning. It was again frustrating to have to be admitted and wait all night but at least he was the first case up. He is munching crackers and watching Elmo right now as I wait for Mark to arrive. Our heart echo is scheduled for this afternoon, late and I am hoping that someone can squeeze us in early so we can get home. Every time I come here to stay, I am more annoyed. Mark told me I need to be nicer to the staff or they will throw us out next. I did not realize I was being rude I guess, and I don't want to be, but like a lot of the OR docs have said, we have known our child his whole life and they have only just met them and most of the time NOT taken the time to review the chart so they, the OR people tend to listen to what we say and do what we ask. But in the case where we went in through the ER, the attending decided he had an intestine issue, not a shunt absorption issue and it made no difference what "we" said, her mind was made up. So sometimes it is frustrating when people do things or say things that you know either won't work, are just are not the solution to the problem and then waste our time trying things that will inevidably fail. And to make matters worse, we usually wait on these things with Anna screaming her head off and Samuel hurting and crying for Mama. It is equally frustrating to be told that your child cannot be helped on the day you arrive. Instead he has to suffer. And if they are too busy, they are too busy, right? I guess, but it did not make my night any more fun and did not help my attitude in the least. I called the Onc Clinic when we were 30 minutes away from the hospital to see if the Onc wanted us to go to the ER or the clinic since no one bothered to call me back. I really just need a month to sleep it off. And I would be so much more sane if Anna was a little better trooper about these stays. I look back at the almost three months we were in the hospital and I don't know how I stayed sane. Yes, I AM whining now. Of course she was better when she was younger. Then she was content to sit in her chair or be worn, rocked, in a swing, etc. Now she is not buying that and is crawling all over the floor. Or she is just unhappy to be in a single room for long periods of time. And holding her doesn't seem to make her happy either. She is the epitome of exactly how I feel right now, unhappy with the whole situation. Difference is that she can be loud, cry scream and generally throw a fit anytime, I cannot but I want to.
Anna stayed up until 11pm last night and was up at 5am. The resident appeared at 11:30pm so I did not get to bed until midnight. A RN showed up into our room to shut a hanging vertical curtain over a door that we originally "thought' went outside. Apparently it went into another room where the person was having problems sleeping. And I am sure they were, this is the Oncology side and our history with that is it is a house of horrors at night. But unfortunately, it woke us ALL up. Samuel was very sad and crying. Anna was ready to play so I was none too impressed. The nurse forgot Samuel's 5am dose of morphine so he was pretty upset by 5:30. What a pain. She even commented on the little amount of sleep I must have gotten. The attending came through early this morning to LMK that our discharge papers are done and we are free to go. Hopefully they can squeeze in the echo soon so we don't have to hang around. She asked if I felt comfortable taking him home, which I thought was nice since no one has ever asked. Probably because I am TELLING them I want to go but she does not really know me. I am more than comfortable taking him home. At least at home, while we may have the same problems, I have help.
We are on the surgery schedule for Monday. They anticipate an overnight stay and that is all assuming there are no complications. Also assuming the echo shows good vessels. They will not move the port but will again put two lines into the atrium. This makes us nervous of course but we have already BTDT. I told our Onc that as long as they don't do the VA shunt and then come back and say he needs to be on blood thinners and heparin shots, I will be fine with it. He said it would be "completely unacceptable" if he needs blood thinners and hep shots. I was very relieved. Funny how that was a fine practice at MB. Here they were horrified at the thought. It is our hope and prayer that the VA will be fine and this issue will be no more. Shunt is a bad word in my vocal right now. To me it is completely unacceptable that his abdomen would fill up with fluid and make him so uncomfortable and unable to eat or even keep down 3cc's of water and they cannot fit him in for a tap. The VA should end that altogether. Then maybe he can get back to good NG feeds and him wanting to eat REAL food again. While the thought of the 8th surgery in three months does not thrill us AT ALL, we hope this will end the shunt issues. Samuel needs some "good" luck. And I think our Onc is really nervous about getting some chemo into his CSF as well so hopefully this will make that possible.
NOW HOME....stopped in the middle because they showed up to do the echo, and we left at 11am, yeah!
Samuel was NOT happy about the echo. In fact he threw a fit and the tech was talking about us coming back for sedation. But she was able to look adequately I hope. She noticed a thrombosis/clot around the same area as the port. I don't know what that will mean. We knew there was a supposed "sheath" there when the original VA shunt was placed but no one could tell if it was on the port of the shunt. Apparently it is still there. She thought it could even be left over from the shunt. I have not heard back from them as of yet so have no clue what the plan is. A clot is not a good thing obviously because if it dislodges and goes to his lungs he is dead. I will be interested to see what they think about that. It all adds up to be a royal pain. Mark says they will probably call and want to open up his chest to remove it next. Kristina gave me some good info and questions to ask when they call, which if that is not soon, I will be calling them. She was quite concerned about the clot. Great, when she is nervous, it makes me nervous.
Someone needs to figure it out because Samuel cannot go in every few days for a tap so the shunt has to go somewhere else, period. His body is getting very sore and it is happening sooner each time. The first time they got 2500cc's the second, 1500 and this time 1050. He seemed acute EACH time even though they took less this time. He wasn't to the point of puking bile but his lungs were sounding wet. And he starved for 24 hours. They came in to hep lock his port so we could go down and he heard crackling paper and thought someone was bringing crackers. The nurse woke me at 7am to LMK that they were coming. I think I must have gotten everyone back to bed by 6:15 or so, I don't remember. But if you are going to wake me up, that is the news to do it with. He was the first case. I ran into my favorite transporter, Mengesh (I know I mangled the spelling of his name) but he is so awesome, recognizes me every time we meet, knows Anna and Samuel's names, etc. The last few times I have been alone for proceedures, he has taken Anna for me and held her so I could comfort Samuel. He told me he would see me later, or hopefully not, but if he did that was okay too, you know. Special thanks to him for helping me, loving Anna and Samuel, bringing them toys. He is the best.
So we are kind of sitting in limbo for now. What a pain. I have a house full of messes. My laundry basket just gets caught up and then Samuel pukes all over everything and it piles up again. That is still happening at least once a day. Projectile now, he is plenty strong enough to hurl it at you. He was a sad man all morning until he puked right after we got home. The kids have piles of clothes to be washed seemingly hidden and suddenly the appear from nowhere. Everytime we leave and come back, no one wants to do anything but laze around for a day or so. Considering we go back to the hospital every few days, nothing gets done. Now we are looking at going back Monday. I would really like to hit Costco and pick up some of the staple items we are out of. Maybe tomorrow.
Or maybe not, Daniel spent the majority of the eve puking now. Kaysha was a bit sickly a few days ago so I pray that Samuel does not get it. Or me, or Mark or Anna for that matter. Samuel's counts were still really good, I mean great and his ANC is about 6000 which is high so he has lots of disease fighting cells going around and about. He pukes so much that it would probably be hard to tell if he was sick, but now that I think about it, he never really perked up much today so maybe his puking was sickly. With him it is always a guessing game. He drained a whole glass of water today upon waking from his nap which was the first time ever. He also can roll side to side now. He asked me for cheese tonight and ate cheese and crackers along with a large bolouce NG feed as well. He asked me to feed him all night last night, which I did because I did not want to hear him cry that he was hungry, so he would basicly eat and then puke. That is just becoming normal around here.
Tomorrow is the four month mark of this misery. Had he never had all these problems, we would be very nearly done with the intense phases of Chemo. Instead, we have only just begun. I still can hardly think of it. Our lovely friend Jodi from MB told us she really believes in her heart that he will do fine, he was just really messed up when he came in. I pray that is so.
Warning....another rant, if you don't like hearing the truth, don't read this.......
I was feeling rather annoyed earlier. Isn't it amazing how stupid words said can intrude on your thoughts and steal your time from what is really important. I hashed this out with Kristina a bit earlier today and I personally don't feel bad but I wanted to put this out there so that maybe it won't happen to someone else. Or if it did happen to someone else, they won't feel bad.
I am very very focused on keeping Samuel alive, giving him the best chance at life, trying to figure out how you feed and hydrate a baby who does not tolerate food well, pukes daily, and has no colon not to mention an abdomen which fills up constantly throwing a wrench in the whole thing. Add to that the fact that he cannot do anything and needs to be constantly entertained. And every other week someone mentions surgery or wanting to start chemo on his CSF which we still cannot get working right. Plus I have am almost 6 month old who needs my constant attention. And two older kids who need Mom because she hasn't been there in so long. Even now they are neglected a lot because of Samuel and Anna's needs. The house is a disaster and we are constantly trying to line up care for the older kids as we rush to the hospital. I am tired, we are ALL tired. My time is very rarely my own unless I choose to stay up late, as I am now just to clear my head and get this out so I can get over it.
I have a job to do, that is it. I have so much on my plate right now that it is unbelievable. I called my Mom tonight just to give her a quick update on the day. She wanted to visit but I don't have the time. Samuel's stoma bag came loose in one are so we had to rip it off immediately before the poop burned his skin and it needed to be done at the exact moment I called her. I honestly just want to rest, but there is no rest. Everyone wants an update, wants to talk about their day. etc and I just don't have the time. That is why I have this site. I try to make it personal so that people who don't talk to me daily will know what it is like, what we are doing, why we don't call them back. I really just want to have a happy day but there are none. I just want to be "normal" again, but that is never going to happen when we have a child fighting for his life in a battle that we don't know if he will win given the obstacles in his path. Does ANYONE get this? Or am I just going crazy? I cannot do it all. Trust me, I would like to. I wish I could just visit with each person who calls for hours, but most of the time I cannot even get to the phone.
Now saying all that, I came to the conclusion that I am NOT a good friend to anyone. I know I have said this before but perhaps it needs to be said again because upon returning home on Wednesday, I have a phone message from a person who I have never called since arriving home less than a month ago. Apparently she thinks I am pissed off at her so she is calling to tell me she is never calling again. Obviously she does not read the updates or she would have known I wasn't even home half the time she called. Or maybe she knew I wasn't home and made sure I would not answer the call. At any rate, I am putting this out there again. This is NOT ABOUT YOU! I don't pick up the phone and call you because I have no time. If I am home and don't answer the phone it is probably because I am cleaning up puke, starting a feed for Samuel, feeding Anna, someone is screaming, the older kids want to eat, the hospital is on the other line, physical therapy is here, etc. etc and it is just easier to not answer the call just to say I cannot talk. At home I have that luxury, at ths hospital the phone is my life line so I have to answer it period because there is no caller ID, no voice mail and it may be Mark on the other line telling me he is coming, making arrangements, etc.
I am not a good friend to have right now because I "use" people. I feel badly about it but it is true in a sense. The two friends I talk to all the time are the best sources of medical advice and expertise I know. One is a remarkable researcher and cancer survivor who just happens to NOT have a colon. She was a previous customer who contacted me the minute she found out about Samuel to help me. What do I know about her life? Not much. She is a great friend to me, I am not a great friend to her. How could I be? I am the source of depressing news most of the time. The other friend I have known for two years now and I admire very much. Up until this happened, we mostly e-mailed constantly. Now we talk daily. But she is constantly advising me on Samuel's medical issues based on her broad knowledge and keeping my group aware of what is up when I cannot. What do I know about her personal life right now? Not much. But I know that she calls me with a joyous attitude and manages to be happy when I am not. And then again, we cry and commiserate together as well. These two people are giving time and friendship to me and expecting NOTHING in return, which is good because I have nothing to give. I am spent. While I love them dearly, I know in my heart that they are my friends right now because they can help me, help Samuel. They have been with me every step of the way. They know what I go through becasue they usually witness it by hearing it over the phone. They give friendship freely and expect nothing in return. When will I be a good friend to others again? I don't know. When Samuel is doing well, not having day in day out life threatening crises. Either that or a few years after his funeral. I have already went through two deaths that hit me hard and I know that I will be worthless to everyone if Samuel died. I don't know how I would explain it to Daniel who says he is going to kill anyone who "hurts Pooper." He got in the way of one nurse while we were in the ER and would not let her near him. We had to pry him away.
So will I continue to be friends with these two fine ladies after this is over? I imagine so. I will owe them a great debt of friendship and I will always honor that. I mentioned a call I saved on my voice mail from Kristina. Someone will surely erase it so I am going to put it here so I won't forget it. This is the kind of message a person living my life will return.....eventually. I did not call her until the next day becasue that was Samuel's BAD night at home.
Happy voice! "Hi, Jennifer! I am so sorry that I missed you. I trust that all is well. Know that I am thinking about you and I look forward to when we can spend some time talking. And even if it is not for a couple more days, I want you to know that I am thinking about you guys A LOT. Alright? I will talk to you guys later."
Guilt tripping me won't work. I don't buy into that garbage and never did. I don't play games with people, I am straight forward. My friend Carrie will tell you that if you want an honest opinion, ask me. If you don't like to hear the truth, you won't like me. When I am home, I can barely return the rehab people's calls. I cannot make an appointment to get my hair cut because I don't think I can keep it. I cannot make an appointment to get my eyes checked so I can get new contact lenses which I really need because I don't think I can keep it, or get away from the family long enough to do it. The only thing I do for me is journal. I like to spend time with myself, my thoughts. I like myself and don't need constant company to feel good. I like being alone, late at night. I can be a hag and it doesn't hurt anyone. And it looks like it will be another horrible night of unrest since Daniel just puked again.
I read a book written by a doctor about Leukemia and one chapter was about friends and how you lose them when your child gets sick. You also spend time making "different" friends. I consider a lot of my friends right now to be the nurses, etc. who have helped us so much. They have been there for the entire thing and have a great understanding of how we feel, what we are going through and what is yet to come. You bond quickly with the people at the hospital because they are going through the exact same crap and you don't have to explain things to them, they are living it, they know. I think of Diandra's mom, Joyce. I have not heard from her since before Diandra died. But Samuel is not being treated at the very place where she died and she is constantly on my mind. I loved these people though I hardly knew them. Her death hit me a lot harder than I would have expected. Things are different. Period.
I thought that the losing friends thing would not happen to me since I have such good friends but now I see exactly how that can happen. People don't stay in touch, feelings get hurt, people go bye bye. People expect things that are just not going to happen. Life goes on for them and all is normal at their house so I think people assume it is here too when we are home. Makes you wonder what the intention of the friendship was in the first place doesn't it? How does the old saying go? You know who your true friends are in a time of tragedy. They stick with you no matter what. I guess the no matter what part means even if you have to take a break from the friendship to care for your sick child. I don't know, but I am going to bed now and will not let this occupy my thoughts any longer.
END OF RANT
I saw some MacDonalds commercial tonight while watching TV with Samuel that somehow showed a bunch of expectant mothers and then ended with Happy Mother's Day. Apparently someone forgot Mothers Day was MONTHS ago. I thought of Samuel, in the womb, perfect. Made me cry. I am so glad I held that child, wore that child, loved that child so much as a baby. He is the light of my life, the baby I most bonded with of all the four. Without him, a part of me is dead. So Happy Mother's Day to you. Kiss your babies, enjoy your children even when they drive you nuts, you know it happens sometimes. Thank God for the "normal" life you are lucky to lead.
Tomorrow is 4 months of this horrible nightmare. Had Samuel not had all these peoblems we would be almost through the most intense phase of chemo and looking forward to maintenance. As it stands now, I don't know what we are doing since every day it changes.
Special thanks to Brooke and April of bee-bos.com for the lovely handmade outfits for Samuel. These are fabulous and he is really enjoying wearing clothes right now. I guess he is tired of hospital crap too. He hugs all his new things when we show them to him fresh from the mail.
Much love from us here. I am going to attemtp to go to bed now.
Update 8/18/04
I just came across this....
This baby has an even worse Leukemia than Samuel and really needs our support. I don't see a recent update and pray that things are still well with this baby and family. Might someone contact the person running auctions on their behalf and see if all is okay and LMK. I will try to put something together for this baby when I get home again. This is another baby who needs God's miracle NOW. Please take the time to pray for her and her family today.
We are getting ready to go back to Childrens, AGAIN, on an emegent basis. Samuel was okay yesterday though probably needed a tap but they were too busy. Today he is miserable and back to puking everything up. The Radiologists say they cannot tap him today so he has to again be miserable. We are probably taking him to the emergency room then because we can not manage his pain once he is unable to keep things down. Plus the threat of dehydration is immense at this point. They are tenatively planning a VA shnut Monday assuming the vessels are good which we should know tomorrow.
Special thanks to Vicki H. of BBB. Your gifts to Samuel are PERFECT and adorable. He will wear one to the ER today. Much love to you, thank you!
Much love and thanks for your continued prayers....
Update 8/16/04
I rocked Samuel to sleep tonight just like he was a tiny baby. He fell asleep in my arms. I remember once wishing that he could always be a baby...but that was when he WAS a tiny baby. I suppose in some strange way I got that wish. At least he is comforted by his mommy's touch. After the 7th shunt revision/surgery, he came back and was sleeping and saying "mom" under his breath with each exhale. I was laying cuddling him when our Onc came to visit and he commented that me holding him was probably better than any pain med on the market. It is nice to deal with a person who feels this way.
Samuel had a pretty good day today. A few spurts of fussiness here and there. His abdomen is still soft though looks like it is growing. Not as fast as before. He is still tolerating his feeds at full doses so that is promising. It just doesn't seem possible that we could avoid the next shunt revision and I hate to even hope at this point. We have been disappointed so many times before. We go back to Seattle tomorrow for another sonogram and Onc visit to determine if he needs to be tapped again and how to proceed for the next few days. I am going to be anxious to know what the sono will show this time. His blood counts dropped significantly after the last tap and I want to know why that happened as well. And hopefully I DON'T have to spend the night there again.
We went to Walmart yesterday. All of us. It was the first place I have went in about 3 months that was not home, hospital or hotel. It seemed rather strange to be normal, even though we aren't. My big purchase was a toilet scrubber since I threw mine away right before Samuel was diagnosed in April. I was looking around for it and remembered it hit the garbage months ago. Samuel rode in the stroller and seemed content the entire time. He picked out a Wiggles DVD and held it for dear life. He has taken to Sesame Street and the Wiggles in a big way since coming home which is nice because Blues Clues will forever remind me of a hopeless hospital room. We were hoping to try to help him remember what we used to do when life was normal, before everything went wrong and possibly desensitize him a bit to people. He did not even care about the people at all. I think he was happy to get out of the house. He was not the attention magnet this trip though because he ended up puking in the car on the way up the hill to Walmart and lost his NG tube. We had to turn around and go back for a change of clothes for him as well as a quick clean up of his chair. So we went without the tube. We went to a fast food place awhile back and he rolled his window down and the lady handing us our food was immediately asking if he was going to be okay. Of course her talking to him made him very upset. Last night while I was in the tub, Mark cut his finger nails and toe nails and he screamed bloody murder which shows me that he is still very traumatized because he used to actually ENJOY that.
On another note, I want to thank Amby from Amby Baby for providing us with another hammock for Samuel. I get asked about the hammock a lot so I will give a little history..... I bought the hammock for Samuel when he was 8 months old. He had no bed but the family bed which did not work out well for naptime since he could fall out. He loved the pouch but at 25 pounds, my wearing time fell short of his naps. So I contacted Amby to see if he thought the hammock would work for us given Samuel's age. He was a bit skeptical because he recommends you start from newborn. But I bought it anyway figuring I could resell if he did not like it. I just could not figure out how he could NOT like it. Of course he loved it and everyone thought it was cool as well. I have always thought it was one of the best purchases I made when he was a baby. I ended up modifying the matterss and making a waterproof wool cover and sheets for it so it would fit a bigger baby. We also purchased a spring that was heavier at a local hardware store. When he could walk, he would run to jump in it so he could bounce around. When I got prego with Anna, I transitioned him to a bed, or our bed as it were so she would be able to use the hammock from birth. But whenever he got sick, he wanted to be in the hammock. After Anna's birth, he would wait until she got up from a nap and then would run and jump in it and want to go to bed. I always worried that he would do that when she was in it but he never did. When he got sick, we packed it and took it with us to the hospital for Anna. It was nice that she could have her own bed. Not a single person ever entered our room and did not ask about it. Everyone thought it was a wonderful thing especially seeing it in action. Of course they about fainted when we put Samuel in it and he LIKED it too given he was smooshed in it. He would always go right to sleep in it. You could tell that when he felt sick or sad, this was a great comfort to him. It has traveled with us from home, hospital and hotel and I continue to love it as do Samuel and Anna. Now that Samuel has reverted back to an infant stage, he wants to be in this hammock a lot. It is easy to feed him there as it keeps his head up enough that his tube does not cause reflux. The frame makes a great IV pole. He does not fear falling because he is supported in every way. I put him in the new one tonight and he immediately smiled and just enjoyed himself. He likes us to rock him and bounce him in it even to this day. He does not mind at all being scrunched in. Amby has changed the new hammock basket dimmensions a bit from the older style I have and it does not appear to need modification for Samuel to be comfortable. They really need to make wool covers for the mattress though. Thanks to Shannon G. for contacting Amby on our behalf. Thank you to Marina C. for handling the details. Thank you to Amby for your generosity to our family. Thanks to the three of you for caring. I am always impressed with a large company who cares about the little people and whose owner is integrous and a giver. Amby obviously went into business to "help" people and is not solely money motivated. That was always my goal with Mom and Me as well. When it is all said and done and you go to bed for the night, all the money in the world makes no difference if your child is sick. I would give everything we have received back in a heartbeat if that would heal Samuel and stop his suffering. I would give anything to stop this nightmare dead in it's tracks. But as it seems to continue, people continue to cross our path and help, so thank you, Amby, more than you will ever know. I pray God continue to bless and grow your company until NO ONE uses cribs anymore. Wouldn't that be a switch? I pray many more companies follow your example. Now Samuel can get in his own hammock anytime he wants to without waiting on Anna to get up. I think I may dye the old hammock now.......thinking out loud.............
If only the hammock could make all Samuel's troubles go away. Please God, give him a pain free happy day tomorrow. Please let his abdomen ABSORB so he won't need yet another surgery. Please let us have a somewhat normal life. Thank you that he is OFF the morphine and no longer addicted to this horrible crap Thank you that right now, we are able to stay home and care for our boy. Thank you for letting him speak to us again. Thank you for that miracle. Thank you for continuing to care for us and sending loving thoughtful people who know what to do to help us at the very right time. Bless them all. In Jesus's name, Amen!
It is bedtime, I am so tired, love, hugs and goodnight.
Update 8/15/04
From 8/14/04 Here I sit at Childrens Hospital, again, waiting to leave and go home. This is the second time this week so I just wonder how long I will be home before returning again, with the same issue. Each time we get into an acute problem which rushes us here, I sit in the car thinking "is this really happening, again?" I asked Mark, how many more times do we have to do this? We were JUST here. Twice in one week, Samuel has had to suffer miserably while his body does him wrong. Mark told me that at some point, it will be the LAST time we stay at the hospital and we probably won't even realize it at the time, it will take several months to figure out. I still cannot believe that a body can go so wrong so fast. I try to figure out how Mark and I could have made a baby who could get this sick. If I ever had a thought of having another child, after this experience, that thought is GONE. Never again will I bring another child into this world after seeing my baby boy suffer like this. Never.
Home now, Anna crying stopped all the works of an update at the hospital.........
Samuel had another bad night on Thursday. Fortunately we foresaw this happening and made an appointment with Neuro Surgery for Friday so we would not go to the ER again. We "thought" this would be faster. It was obvious that his belly was filling up again. At first we wondered if his morphine addiction was back since he was on such heavy doses over the weekend and Monday so gave him morphine to kill the pain for him. This worked at first and then he started puking so it became harder to keep the dose in. We were not sure if he was puking because of withdrawals, or agitation from withdrawals or if his stomach was really full. We were measuring his belly at home and got 56cm. After the drain, they measured 54cm. Before the drain of 2.5 liters, they got 60.5cm. So we thought we were not as acute as the last time. But once the vomit looked like it had bile in it again we knew we had some problems developing very fast. He puked up his NG tube about 5pm so I just removed it to give him a break. Unfortunately, he lost his 3pm feed so had only the noon one to go from. We gave him some morphine and antinausea meds after giving morphine alone and having that come up several times. He literally could not sit or lay comfortably at all. Every few minutes he would ask to be moved. I had invited Carrie over a few days back not knowing that our night would be so horrible so she arrived shortly into his misery. We tried to eat dinner but basically Mark and I took turns caring for Samuel, cleaning up puke, moving him around, trying to get him to sleep so he could get some relief. Meanwhile, Anna was also an unhappy camper for an unknown reason. Samuel had gotten to the point where he was calling me hysterically and saying "Mama, I hurt, Mama help me," over and over again and not only could I not help him but I had Anna to try to feed and comfort since she was hysterical at about the same time. When he started asking for help, I though it was so much easier when he did not talk, at least he did not break my heart with his voice then. He also started slapping himself in the face and on the head. This started Monday shortly after the first drain. I wondered if they had his pressure too low in his head so I asked but was assured that it was fine. It maybe just "felt" different because it could drain. And sometimes kids feel a new sensation that they don't know how to express, or possibly it scares them and they refer to it as pain when it really is not.
Anyway, Carrie could not believe it. She told me she was trying to figure out what to do to help but could do nothing. It was killing her to hear him ask for help knowing we could not help him. He did not even want us to hold him because he hurt so much. I told her she might as well leave since it was only going to get worse. She gave me a hug and I almost lost it but managed to keep it together since I still had two children who needed a Mom, not another person crying. She asked me how I did this for this long, it looked like a living hell to her. I told her, you just do it. If I give up, if I can't handle it, Samuel will die. That is it. The one thing Carrie could do for me is clean my house. I have no time to do this. I am usually at his bedisde or caring for Anna. In my free time, I want to sleep, or spend time ALONE. Not clean. What spare time? Between 2 and 3am assuming Samuel is not up crying out to me. Carrie is the only one who can come in and clean without asking 500 questions since she worked for me and is a good friend as well. She knew where everything is and is used to my "messes." Of course she said she would love to, but she is leaving town tomoorrow for about a month. UGH! It was nice to share this situation with her first hand, even though it was so awful. Someone else helped share the burden even for a few hours. Someone who can pray, someone who will know what to pray.
It is hard to explain how I do it, how it feels day in day out. Words don't always express it well but here is an analogy that might help....
Imagine you are on a boat in the ocean, it is a nice warm day...you have been on this boat a long time enjoying the weather, the sights, the sounds of the water. Life just seems perfect, or nearly so. I just love the ocean.
But suddenly a storm pops up from nowhere and you are thrown from the boat, which is your "normal life" into the sea which is freezing, tormenting and hopeless all the time. In the sea, there is no rest, you must always be thinking, planning and biding your time and energy so that you do not wind up spent. Nothing is fun when you know that lives are on the line. You feel like a part of you is dying all the time.
At first, you still see the boat so you start to swim to it but it disappears from your sight. You panic. You know you can swim, but you are unsure of how long you can swim before your body physically gives up. There is nothing around you to swim for, everything that was normal and familiar is now gone. There is no rhyme or reason to anything that happens in the sea. All logic that makes sense to you is meaningless in the sea. But you don't want to drown because there are many people who are literally depending on you to keep them alive so you start swimming praying it is in the right direction. You swim slowly and try to save your strength. But not long into the swim you become tired and you want to sleep and in fact you fall asleep only to wake suddenly choking on water. This gives you enough adrenaline to wake up and swim on. Then you think you see a rock, something to grab onto, hope. But as you get up to it, it disappears. You want to cry, you want to die, you want to give up but you swim on anyway because drowning means those who need you will die. You see a boat, you again have hope, you see people reaching their arms out to you. Everyone wants to help and you reach out to them but lose their grip every time. It is then you realize that no one can help you, and you swim on. Now you are so tired that you want to give up but the only thing keeping you going is the mirage of land in the distance. You keep thinking you will make it. Finally you do, you hit land, you can rest, you can catch your breath, even if just for a minute. You even feel a false sense of hope... But then you realize you are on a deserted island with nothing and NOT where you need to be and you are forced back into the sea. You take the time to cry then, because you "thought" you were home free and when reality hits you, you just lose it. But crying does not help, it does not change the facts and you must go back to the dreaded torment, the constant torture of the unknown, not knowing if you are headed in the right direction, seeing hope, having it dashed, wanting to give up, but knowing that if you quit, your child will have no hope at all. So you swim on and on and on and pray that somewhere the mirage of safety and hope will become home and you will get there soon. And you won't have to ever be cast into the sea ever again. You won't be sad, tired, afraid, hopeless, or lost in indecision ever again. That is my hope and prayer for today. I go on because if I don't I will drown in a sea of sorrow a miserable horrible death. I try not to get caught up in the immenseness of our situation but rather deal with the day to day things pushing on in hope that land is near. I go on because when Samuel is feeling good and happy, he is my "Mr. Pooper" who loves me more than anything and depends on me to "help Him." even whin I cannot do anything but hold his hand and cry silently with him praying for a better outcome NOW.
Carrie left our house at 9pm. Mark dropped a new NG tube which sent Samuel through the roof. We also needed to change the ostomy bag which required ripping it off his skin but decided to wait since it was just another torture at that point. I tried to start a feed slowly but within 15 minutes he was puking again. We tried more morphine, more antinausea to keep things down. His face and eyes were starting to look sunken. Carrie even commented that he looked like he was about 18 months old, not 28. I knew he was rapidly becoming dehydrated so started some Pedialite. We decided that if we could keep that down, and manage his pain, we would stay home. If not we would pack everyone up and go in. Thankfully, the Pedialite stayed down and from about 11pm to 1am, he slept. But after that, we were up every ten to fifteen minutes to move him around, comfort him and again listen to him scream for us to help him, he hurt. At 2:30am we had another discussion about going to the ER. A 2 hour drive, waking three kids, packing up for another stay, etc.... We already did that and spent 10 hours there before he got any help at all. We figured that our appt the next day would still be faster and easier to let everyone sleep. The Pedialite was staying down and he was starting to look better so we gave him more morphine. I would just get him to bed and Anna would wake. For whatever reason, she was restless that night too. I was looking at him suffering and thought of many mothers who came before me in a day without medicine who had to not only watch their baby suffer all the while not knowing what was wrong, hear them ask mommy to help and die inside, and also see them die a miserable death. I was thankful we had options.
Finally, by 5:30 after numerous shifts of Mark and I holding him, comforting him, patting him in an effort to get to bed, I just gave up and got up. Made coffee, felt like crap... Around 6am the morphine and Pedialite must have finally caught up with his system because he was pretty happy. Happy enough to mask all the symptoms so we were able to get ready to go without hearing screams, etc. I had packed emergency bags two days before and basically just had to find a place for the kids to go and head in. Now we just need to buy a luggage/cargo box for the car since there is barely room for us in the car, much less trying to stuff luggage in. It is an incredible pain and now that it is obvious that we will be needing to keep bags packed and ready at all times, we will do that as soon as we are able.
I gave Kristina a quick call before leaving to LHK things were not okay. She left me a lovely message the day before and we had not been able to connect in a few days simply because Samuel is so needy, schedules, etc. I still have that message saved on my voice mail it was so kind, thank you! It is so nice when people DO NOT take it personally that I do not call them the same day, or even the next day. Anyway, the last info we were given by Neuro Surgery is that they wanted to save this shunt by tapping off fluid when necessary. I don't think they were planning to do it this soon. And the VA shunt was out becasue the one done at Mary Bridge threw the wrench into another simply because of scar tissue, etc. And the port goes into the same vessel and we don't want to do the heperin shots daily and blood thinners again. I did not know if they would just externalize it at that point and let it dump in a bag until such time as they decide what to do next. My mom had asked if they were doing all this simply for chemo purposes. I explained to her that they were doing all this to KEEP HIM ALIVE. We are not even dealing with the cancer right now. The fact is that your abdomen cannot fill up with fluid. Eventually it will crush all the organs and you will die of cardiac arrest or respiratory arrest or some other organ failure. It is so frustrating to know that they have finally gotten his head working right but now cannot drain the fluid in a place where it can absorb. The head won't absorb it and the abdomen won't either.
We arrived at 10am. Samuel was okay for most of the trip, only getting agitated by the last 20 minutes. We gave him more morphine then. They paged the NP for Neuro Surgery but we ended up waiting til 11am to see her. She did not know us and came in gowned and gloved up. I told her we should have lost the MRSA tag by now and she looked it up and it is GONE!!! So that was one good thing that happened right off the bat. We no longer were treated like he had the plague.
It sucked that she did not know us so we had to give her all the history and I basically said, we need a CT and a sonogram RIGHT NOW! We did not get done with those until 1pm. So he was miserable. The minute he would fall asleep, they would need to wake him for a procedure. I would get Anna to sleep and then he would scream out and wake her. Or he would ask me to help him and I would just want to cry. After a run around and mess with scheduling, they finally got some fluids running through his IV and decided to admit us because of a concern for dehydration. They did not end up draining him until 4:30pm. By 2:30pm he was definitely puking bile and asking for water. He was supposed to NOT eat or drink but I gave him water anyway since I knew from the last time they would just pump it out and drop a breathing tube. I was not going to make him suffer from thirst too. I let our Onc know that this was NOT acceptable. We could not come in every four days for a drain. And he has lost a significant amount of weight from this. Once it fills up, he cannot eat. So he is about 25-26 pounds right now. I told the Onc that the whole point of the months off of chemo is to get him eating too, but this makes it impossible. Once again, he totally agreed with me, no battles there. They did decide to put him on a med what would supposedly slow the production of CSF which seemed like a good idea at the time until I did some research on it and decided that if it caused nausea and vomiting, drowsiness and confusion, it was NOT for him.
Dr. Lee came in around 2:30pm to turn his shunt valve up to 1.5 at our request. It was supposed to be at 1 but Mark swears that when he looked at it, it was at .5 which may be where all the issues are. He was dumping so much fluid that he was miserable. Immediately he stopped slapping himself and has not done it since. Dr. Green said his ventricles did not look over drained but perhaps he was draining too fast for "him". Now he seems fine and was fine from then on, even with the tummy distension.
Finally, at 4:30pm we were in Induction preparing for the drain. A new doc did it and told us she would get all the fluid. This made me wonder if on Monday, they did not get it all. After 2.5 liters, maybe they thought that any more would send him into shock, I don't know. So we waited and when she came back to give report, she said his tummy went down like a balloon. He was really small and another almost 2 liters were out. They admitted us for the night because of the fear of dehydration especially after tapping off another 1500cc of fluid. He came back fine. The Neuro Surgery docs were concerned that with the pressure valve back up, he might stop talking, but he did not. He was a happy boy. Even a "Nutty" as I used to call him when he was especially comical and playful. It is amazing how when he is feeling good, he is feeling GREAT, but when he is bad, it is SO AWFUL. He is absolutely miserable. It is so unfair that a baby should be tormented like this. We are all tormented, but not like him. Even labor does not last this long or appear to be this painful.
When he came back feeling so much better, we were relieved but of course I was not happy to be staying again. Mark though it was better to stay knowing we would leave the next day but it did not help. Being there sucks. Now mind you, when we arrived, I felt HOPE, not despair. I knew they would help him. At Mary Bridge, I would get there and feel hopeless so that is a big improvement. But at this point, hospital stays are not what I want to be doing. His stomach was really down, more than on Monday's tap so I think they must not have taken it all then and that is why it filled so fast. He slept well through the night. Anna did not however and I was so exhausted from the night before that I was about ready to put her in the room with the "other" baby who cries all night. Finally about 11:30pm, all were sleeping. Our lovely nurse Christie told her helper for the night as well as the RN who followed her to do whatever "I" said. I laughed but I guess they are getting to know me. I brought his food and my pump and fed him immediately after the proceedure without waiting for the "orders" and a few people were beside themselves about that. One asked me how to clear my pump and I informed her that she was not to touch my pump. My pump is on a timer and will feed as many feeds as food available without beeping. If they clear it, it is messed up for the night.
By morning, I was waiting to leave. We had one of my not so favorite nurses. Mostly because she is slow, lazy and forgetful. She did not mind at all that I had my own pump and was feeding Samuel. So I knew that we would not leave so early. At 9am, our discharge papers were done, just needed the Onc team to come through and then we sign out. De access the port, etc. I asked our nurse to call the team and ask them approximately when they would be through since Mark had a 2 hour drive and wanted to time it well enough that I was not waiting around when we could leave. Anna was again unimpressed with the day. She bawled most of the morning, not wanting anything so I was borderline insane. I ran into Dr. Avelino who did all the shunt revisions for Samuel at Childrens. It is nice when they recognize you and treat you like a human and he always does. On that note, I am also enjoying the residents and fellows there. They do not appear to be hardened, they acutally care for the kids a lot. They don't act like know it alls at all. Thanks to Melissa Walsh, Eva Moore and Dr. Greene for your wonderful care! I don't know why I am surprised by this, possibly from my past employment with ENT docs where there were two new docs who came into practice and they both OBVIOUSLY came into it for the $$$.
Anyway, Dr. Avelino told me Samuel's head looked great. His ventricles were still big, but maybe that was all the shrinking they would do. Some people just have big ventricles. But his abdomen looked bad. He had talked with some docs at the UW hospital and they had decided that because Samuel is so "complicated" they would attempt another VA shunt assuming the vessels are good. If we came in for another tap this week, it is tenatively planned to do a heart echo to check the vessels and then move the tube from the abdomen to the atrium. I was relieved, a little. We know the blood can handle the output. But we don't know what damage the last VA shunt did. Again, I am so frustrated that we had docs at MB who just put the shunt. We need to talk to them further about moving the port. But if they find this is okay to do, I think and pray it will solve the shunt issue. At least his tummy won't fill up with fluid and he will be able to eat, do PT, etc. But I am not thrilled with the prospect of another surgery. We are pretty much planning on it though.
The Onc came through to say goodbye. A new attending whom I had not met. She is having them schedule another sono on Monday but we are hoping to push it back to Tuesday so if he needs a drain, it can be then and hopefully we could make it to the following weekend before coming back in. Looks like we will just live in and out of the hospital for the next two weeks. So finally she left and all we had to do was sign papers and GO. But of course our nurse was in another room. Samuel was crying, Anna was crying so I picked him up and walked out to find the RN. She was in feeding the 2 month old baby who screams all night since his parents don't bother to show up. She said she was done and would be right in. But ten minutes passed and nothing but my kids all fighting, or screaming. I was about to really lose it at that point and knew if I went out there, it would not be pretty. It is amazing how one minute you can pray and the next minute you can cuss..... Another ten minutes passed so I decided to put Anna in the hallway. She was screaming in her car seat and I figured that maybe someone would notice that. Within two minutes I heard someone talking to her. I opened the door, but it was of course NOT my nurse. I told her, "right response, worng person." She wanted to know what I needed. I told her my discharge papers have been done since 9am, all we have to do is sign but apparently our nurse cannot get on the ball. Less than a minute and she FINALLY shows up.
We leave to the car. I am so happy to get out of there. Mark went to the pharmacy to get the RX's and that ended up taking another half hour. We waited in the car and everyone was unhappy about that as well. It was just a miserable day. It was 2pm and I had not eaten so we stopped on the way home. That took forever too. Samuel and Anna were crying. We stopped again to get him some water and then he wanted nothing to do with it. Traffic sucked. When we were about 45 minutes from home and Samuel was still sad, I felt as if we had been in the car forever. I wondered if there was any place to stop and take a quick break. But it would not really help Samuel and would just prolong his misery so we kept going. Kind of reminded me of life at Mary Bridge. Felt like a never ending car ride, you just want to get there, you need a break but that only prolongs the misery. It feels like you will never get there when you are stuck on obstacles. You just want to scream!
We walked out of the hospital at 1:30pm and did not get home until after 4pm. I was exhausted. I put Samuel and Anna to bed and then went to bed too. Samuel slept well last night as did Anna, thank God! I just want to sleep for a few days I think. At least when I dream, it is not a nightmare.
Thank you to all who keep us in your prayers. Thank you to you who love Samuel and don't even know him. Thank you for caring. Please don't ever think we take your care and concern for granted. I feel so much better knowing that I am not the only one praying, sobbing, going crazy, etc. Our prayer is that our child may be stablized and we will be able to be home for awhile without constant acute problems. We pray he can eat, gain weight, be happy.
Special thanks to Melanie, the outfits fit perfectly, and everyone loved their gifts! Thank you to Brooke, your outfit fit perfectly as well. Thank you to Beth R. for your incredible sacrificial gift to us. Much love to you three.
Much love to all.
Update 8/10/04
Hope you are having a wonderful day. We are again preparing to go home.
After numerous CT scans and X-rays, it was determined that the fluid in Samuel's abdomen be drained. They drained out 2.5 liters of CSF. Yes, you read that right, 2.5 liters. I don't know how a body can hold that much and not explode. We figure this to be about ten days of drainage or so. Probably the same time the shunt was turned down, it just pooled up and stopped being absorbed well enough. So far the CSF is not infected so they do not anticipate pulling the shunt yet. They are hoping to manage the drainage with periodic taps to the abdomen as needed. They will begin watching and measuring each Friday when we visit the Onc so hopefully we won't be doing another emergency ER trip again soon. It is much faster and easier to be admitted from a clinic visit than through the ER where no one knows you.
Samuel is doing better today though still in need of some morphine for pain but I am sure he is looking forward to leaving. He was a happy boy after the proceedure yesterday and I was so relieved. I had to be a hag for half of the day since no one seemed to feel draining it was emergent. I was pulling tons of bile out of the NG for most of the day until the proceedure so he would not puke. His port would not allow anyone to draw from it yesterday either. That seems to be a thing that plagues us here since we are on a Surgical, Complex Care and Rehab floor rather than a Hemeonc floor so no one knows how to draw from a port. I usually have to watch and tell them so they don't decide it won't work and they need to send him off to be poked again. Again, a reason you have to be with your child at all times. There were four occasions where the RN was uneducated on drawing labs from a port and told me or Mark that Samuel would have to be poked. We both explained to them that we got the port so he would NOT have to be poked and they needed to either learn how to draw correctly, or get someone else. So anyway, the IV Therapy lady could not even get it to draw and was talking about doing a TPA to unclog it. This is a pain as it is two syringes attached to the line in an L shape and one is pulling and one is pushing. So it is obnoxious and hangs off the front of his chest and he cannot resist playing with it. I told her to go away until after they drained his abdomen as I was sure that once they fixed that problem, the rest would go away. Needless to say, I have been NOT a happy camper here this time, after the time I spent in the hospital just weeks ago, I have no patience for stupid things I guess. Plus Samuel had to wait over 24 hours to get relief for his poor tummy. He could not eat or drink and he was hungry and thirsty. I chose not to eat or drink around him which meant I did not eat much at all because I did not want him crying to be fed. After the draining was done, the Radiologist called and said it was 2.5 liters. I asked them to check that again, and then again because we were all stunned that a body could hold that much. They confirmed it. And the kicker is that no one felt that was emergent. That is and was so annoying. And the nurses, Oncology team and I were all astonished by the amount but Neuro Surgery seemed unphased. So our prayer is that his abdomen will now start absorbing the right way now that the pressure is off and it can start our fresh. They do not think it was a pseudocyst as the CSF was not infected so think the the fluid was just all over, but not in a ball or sac. So that is hopeful. We pray this is the last issue we ever have. It would just be really nice if the CSF would just reabsorb in his head and we did not need the shunt, but of course, we have already been there, done that, to no avail.
For some strange reason, coming back has been like a reunion of sorts. The last time we were here, Samuel was NOT talking and now when he was not in pain, he was jabbering with everyone. He almost enjoyed the nurses messing with him so he could say "all done" when they were through. He does not seem traumatized like I though he might. We ran into some of our favorite nurses, Julie, Esther, Christi and Kat, and even saw Dr. Moore which was nice. It was even nice to see Dr. Lee...though I don't know why, LOL! He was the 6:30am tape ripper, so maybe it was nice because there was no tape for him to rip, and while his bedside manner could use some work, he does care about Samuel, as does everyone else...except for Hagola, who is here today too. The ER nurses we had were awesome as well. It is obvious that for the most part, the staff here really love children.
Kristina told me that when children go in for surgery, the people in the OR are so careful and gentle with them, even hug them. I know this is true as when Samuel came back from the 7th surgery, the lady who transported him back told me he hugged her and she hugged him, and how cute he was. I was able to go in while they prepped him for the drain yesterday and the anesthesiologist was fantastic. He was not impressed when I told him about Samuel's stomach being full of bile. I told the nurses and asked them how he was supposed to go to surgery with a full stomach since it is "supposed" to be empty, but no one had an answer. The anesthesiologist decided to drop a breathing tube just to be sure that he did not aspirate. I asked him to suck his lungs out while he was there. After the surgery, he had no more bile in his tummy, was hungry and thirsty and able to poop and pee. AND most importantly, his prot would draw just fine after the pressure was off. His lungs were fine as well. Thank GOD! Thank you for your continued prayers. The same lady who brought him from the last shunt surgery who hugged him, brought him back this time and told me how good he looked and what a sweet boy he was. He was saying "momma momma momma" at the door when he came in.
Our onc visit on Friday went smoothly. The CT showed his ventricles to be smaller and the one done yesterday showed them to be the same. Dr. Lee actually caught me in the hall and said they looked GOOD which is the first time I heard that. Samuel was talkative to all the nurses and even to our Onc who was absolutely beside himself with joy that he was talking! I mean he simply was overjoyed! I pointed to Mark and asked Samuel who that was and he said Daddy. I pointed to Anna and he said Anna. I pointed to me and he said Momma. I pointed to the Onc and he said Papa. It was really cute. The Onc was not wanting to turn up the shunt pressure for chemo after seeing this improvement which was SO SO nice. I was prepared for a battle but cannot tell you how nice it was to have someone agree with me without talking them into it. And he also stated that this is why he wants to give him several more weeks on low dose chemo/poison to allow him to be a boy again, to have fun, to walk, etc. So this was nice too. Our other Onc at Mary Bridge would have been chomping at the bit to start actively poisoning again. So I was very happy Friday. He agreed to do another Cysternogram, which was the dye study to check distribution at the new shunt pressure. If deistrbution is good, they will treat him as he is and not turn up the shunt overnight. This is good for Samuel as he won't be uncomfortable, have headaches or stop talking for a day. No one wants that. It will be good for us as we won't have to make two trips in and out over two days. The drive in Friday was 2 hours in and 2 hours home. Samuel was puking and unhappy most of the way back. Now of course, we know why, because his tummy was so full, that the food was just making him hurt. Sad, but at least now we will know the signs. And his weight was up on Friday to 14.7kgs from the week before of 14.4 so we were happy. But now we realize he has lost 2.5 pounds of fluid so we have some gaining to do.
Anyway, I need to close for now and pack to leave. Special thanks to Marsha in CA for the pj's for Samuel. It is absolutely perfect. He wore it here, he will wear it home. Thank you so much for caring! Thanks again also to Sara for making it possible for me to communicate with you all while I am not home.
Much love to all!
Update 8/9/04
Sadly, we took Samuel back to Childrens yesterday. After spending almost ten hours in Emergency, they finally figured out he does have a pseudocyst, our fear. So today they are goinj to try draining it to see if they can save the shunt. If this does not work, then they will externalize it again and try to determine where to put it next. Apparently doing another VA shunt, to the heart atrium, is not a great option since one was already done, makes it more tricky with scar tissue, etc.
Samuel's abdomen is distended again to a miserable state. He is again on tons of morphine and throwing up bile because the organs are impacted. His lungs were clear when we arrived but last night started sounding like they are getting fluid in them too. We hope that this will resolve immediately with the draining.
Please pray specially for him today. He ihas been through so much and being back here is miserable. Mark and the kids are home today because we cannot find a place for them to stay overnight and haven't decided whether we should get a hotel again or not. We are hoping this will be s short stay, long enough to drain it, watch the other symptoms go away and go home. APparently sometimes people need a bit of help to get the body used to absorbing excess fluids so they tap these off at the bottom from time to time. It is just frustrating.
That is it for now. More as I have time to update.
Much love and thanks so much for your continued prayers.
Update 8/04/04
I have wanted to post an update for the past few days but have spent so much time enjoying seeing Samuel come back to life. He talks more and more daily, more clearly and is now regaining his personality as well. We just hang out with him and everyone takes turns asking him what things are, who people are, etc, just to hear him speak. It is very strange to hear him say Momma in the middle of the night when for weeks he said nothing. The only way I knew he was up was he would start his musical Aquarium playing Twinkle Twinkle Little Star, or if he was in pain, he would just cry. Or the nightly four hour check would just wake him so I just go up when the nurses would appear to prepare for him to wake frightened. I cannot tell you how nice it is to see a happy boy, hear a happy boy and have him want to play and interact with us again rather than just scream no all the time. He absolutely adores Anna, I mean he just lights up when she is around. Staci E. sent me a long note a few weeks back about her Dad and cancer and related it to Anna being Samuel's angel. She was right, Anna is Samuel's angel, she loves him no matter what and through it all, she has been with him, even when he did not want her or anyone to touch him, love him, etc. She never gave up, she never got sad about it, she just lived on happy to get any attention. And now she is just so thrilled to get some attention back. She is the only one who will lay in bed with him, or crawl around his feet if he is n the bean bag. Kaysha and Daniel tire of just hanging around after awhile, but Anna doesn't. She will sit and just stare at him. He says "hi Anna" to her everytime he catches her looking at him. And he tells me "baby crying" or "Anna crying" if she is sad. He threw up a few days ago and said "sorry mama" which broke my heart because he does not have to be sorry, it is not his fault. We have never made him feel badly when he has puked, but rather tried to help him get it up. He was so weak for weaks that his stomach would heave 20 or so times before the muscles would get it up. And then he did not know what to do with it and he would just swallow it. He could not hold his head up on his own so every position we tried to put him in so he could throw up only made it worse. It was so awful and like that for weeks. Yesterday I heard him cough and knew he was going to puke and ran in to hear him gag and then sadly say, "I puked". Breaks my heart and I pray that this will end soon. He puked the last two days because he got so upset at PT and OT since he is afraid of everyone who comes in the door. So I don't think it was a food thing so much as a stress reaction. Nevertheless, no one wants to puke. It just sucks.
Speaking of food, he is doing GREAT! We weighed him tonight and got about 31 or so pounds which is holding steady from last week. So that means his new feeds made by me are working well. That or he is keeping more down since they are less calories per oz than the Elecare and he is not getting a huge amount of oz. Whoever came up with breastmilk at 20 cal per oz must not have been checking my milk. Apparently chocolate makes high cal milk.......
Aside for the once a day puke, or so, he is asking to eat, saying he is hungry and taking a few bites. We are sure his stomach has shrunk and even his 5-6oz feeds are dispensed over an hour. So a few bites would fill him up. Honestly, I am enjoying the NG tube. He is getting lots of things he would have never taken any other way so it is very convenient. And giving meds in it is lovely especially since we don't have to wake him if he is sleeping to do it. Nothing made me madder than some nurse waking him to give him some dumb thing he did not need anyway. I usually refused, told them to leave it and I would give it later. One actually asked me to wake him by a certain time which was 9pm to give it. Apparently these people were clueless as to the amount of pain he was in while up. When he slept, we were all thankful for in that time, we knew his suffering was minimal. On one occasion, I actually gave the Tylenol to Anna instead of Samuel which really irritated the nurse when I told her. I always appreciated the nurses who had children and let him rest. One of our favorite nurses, Patty, made Samuel a sign for his door in the ICU that said "I am sleeping, please do not wake me, love-Sam." This was after a particularly rough set of days, he had an abcess in the cecum which was drained and he finally was able to sleep without torment and she did not want the loud doctors barging in to wake him. I loved that so much that I kept it. I put it on his door several times on the regular floor later on. I asked one nurse if anyone would heed it, say docs or nurses downstairs, and she said most likely not. I asked about a "Do not disturb" sign since everytime I would start to pump milk, and just get it going good, someone would come in and stop up the whole works. She told me no again, they would just come and go as they please. So then I asked about a "Do not disturb, PARENTS BUSY!!!" Sign. Did she think anyone would know what THAT meant. Of course, all the nurses laughed and said they knew. One even commented that this was a CHILDREN's hospital. So I asked how she thought these children came about, LOL! You know, we were away from home a LONG time, Mark and I spent very few nights with each other throughout the hospital stay and most of those were VERY sad exhausted nights while Samuel was in ICU and we could no stay. I always felt so incredibly awful when we left. Now that he can talk again, he is constantly calling me if I am not in sight. I am sure he felt like this then too, just could not express it. Makes me very sad to think of all the time he had so much he wanted to say and physically could not do so. I am so glad I did not take no response as a no. I would ask him if he wanted a hug or kiss and he would just stare at me blankly. So I would just hug him and kiss him anyway. And we talked to him a lot and showed thim things and asked him things with no response for weeks. Now, all those things we asked, showed and tried to teach are coming out. Those weeks of watching educational, and fun videos is coming out when he says words and shows us things he did not know prior to diagnosis.
More good news! Samuel's speech therapy assessment was today and the lady decided that he does not need any therapy at all. She tried to "look" for things that needed help, but could find none. In fact, she stated he was actually ahead developmentally for his age as he knows all his colors, shapes, some numbers, letters, body parts, etc. Great news! He continues to improve daily and is regaining his personality now as a comedian. He was always a funny boy and he enjoyed making people smile and laugh. He is sitting better and holding his head up pretty well too. But still a ways to go there but definitely progress in the right direction. A tremendous weight seems to be lifted from my shoulders in that respect. After everything he has lived through, I pray chemo will be nothing in comparison.
I feel better mentally too. We almost have a handle on the wash now. Tomorrow is two weeks home. Funny how time flies at home. A friend came over to bring lunch and gifts for the children and it was nice to do something that felt "normal." To share a laugh, talk about something other than sickness and sadness. Share life, joyful things. Thank you! I keep thinking someday I might feel like myself.
We go back to clinic in Seattle on Friday. I will look forward to seeing Samuel's liver numbers after being on my formula a complete week. They will do another CT as well to check the ventricles but they are obviously smaller. They will probably tell us they look normal, based on his behavior, that would not be surprising. No one at Childrens's has really heard him speak so they will be surprised. Course, he will probably just cry, but when we tell our Onc, I know he will be pleased. With all the whispers of brain damage, etc that were circulation, I think they will all be very happy for us and Samuel. It will be nice for him to show some personality. As far as they are concerned, he is a vegetable...won't they be surprised.... No major chemo yet, just talk about when to start apinal taps. And they want to turn up the pressure in his shunt to do this and after seeing him improve literally overnight, we are NOT impressed with this idea so I am sure there will be some negotiations along those lines as well. We do NOT want to see him go backwards. Especially when it causes pain and discomfort for him....as if chemo alone is not enough. We shall see.
Mark and I are not as worrysome about Samuel as we thought we would be upon arriving home. I always felt if we could jsut get OUT of the hospital, the curse would stop. I pray that is so. We constantly check his abdomen for swelling, etc since the last VP shunt caused a pseudocyst. No such evidence though his tummy is growing. I hope it is just getting bigger because it is being nourished, and maybe just a tad sore from using muscles which have to find a new place to be, etc. After the many weeks in the hospital, we definitely know the signs of problems starting. We haven't seen those yet. Pray they don't arise and he just keeps imporving.
Thank you to God for healing Samuel's body daily and giving us back our boy whom we love so much. Thank you to those who continue to care and pray for him. Thanks for your continued notes of support and thoughtful acts of help to our family. It is very hard to ask for help, especially when you don't know what to ask for. A lot of times it is just staring you in the face and you don't see it as a need, but someone else does. Thank you to my friends who are able to ask for help for me and let others know ways they can help. When you child is very very sick and you don't know if they will have a good outcome, you feel like a part of you is dying. If you have ever cried so hard that you literally dry heaved or just threw up, that is what it feels like inside. No amount of crying makes it better, but you just cannot do anything else at the time. There is no joy in anything but seeing them improve. As they improve, you heal a little too. Thank you, God for healing my soul, a little each day. Please pray for the sick children today and strenght and comfort fot their parents.
Thank you, blessed friends who care. Much love and hugs to you tonight.
Update 7/31/04
We were awakened to a very strange noise...Samuel trying to talk. He has been talking all morning. It sounds like baby talk still compared to the way he was talking before, but it is REAL progress. His head is not swollen at all from the night and he is still doing very well on his feeds. Joy to the world! Praise the Lord with us today. Our boy CAN talk and wants to. He seems to be discovering all the toys that were sent again today so the kids are having fun bringing them to him and seeing him get excited and hug them all.
As the day went on, he was trying to make sentences and almost talking our ears off. He said Anna's name for the first time. Well, correctly, anyway. Before that, he called her Nana or Haydee. It was adorable. He asked for water, said all the kids's names, played with all the "quack quacks" and clapped his hands, blew raspberries, laughed, and had a very happy day. Kaysha and Daniel spent almost the entire day either in his room with him or out in the "Big Room" in his bean bag with him so they could chat. It was really obvious how much they missed him today. We pray the shunt keeps working well and we have another day full of chatter tomorrow. I still cannot believe my ears when I walk by him and he says "hi momma." Wow. Amazing how a big step in the right direction can really change your spirits. I guess I got my wish from last night, only not just a good morning but a whole day full of words. Praise GOD!
Many thanks and love to you all.......
Update 7/30/04
Samuel had a GREAT night. The new formula did not upset his tummy at all and he got all three feeds without me waking up to do them. I actually slept last night too. So did Anna.
Our clinic visits went well. I dreamed that his swelling went away over the shunt and woke up to check, but of course, it had not. So we were both concerned about that. We went to oncology first and they did a blood draw which showed his counts to be better than ever, which both pleased and ballfed our Onc. Supposedly with the low dose chemo, they should be lower....I guess we will have to start giving it then, eh? Or there is talk about raising dosages if they don't appear to be doing anything. We both tried to keep a straight face when he was talking about how great the counts were in amazement. He asked about the feeds but I disclosed nothing about making our own formula because I wanted to see the labs first. Everything was good and his liver function was closing in on the normal range as well. I have added vinegar to his formula and his blood pressure was down too, considering he was screaming when they did it. He has neither gained or lost weight so we were both pleased about that as well. We asked about having the cultures started to get rid of the MRSA tag which makes all staff have to gown and glove up to come into our room and they told us they would swab his nose, throat and stoma. At first we thought we would have to change the bag, which we just did earlier that day so were unhappy because it requires tearing it off the skin as it is caulked on. But then we decided to just empty the bag as best we could and let them just swab it from the inside. This worked great but stunk the entire room up something horrible. Did I mention that his poop reeks terribly on this "new" formula? After the swabs, we went out to find out where Neuro Surgery would see us and were told they would just page them so go back to our room. When we got back to our room and opened the door, that horrid stink just about dropped us flat on the floor. We laughed and gagged and Mark opened the door to let the room air out even though we were supposed to be in isolation. I watched to see if anyone fainted as they passed by. Mark mentioned hiding the diaper under a counter thinking it would be funny if people came in and tried to find that awful smell....but I ended up just tying off the bag. It was a good laugh which we both needed. Poor Samuel did not know what we were laughing at.
Neuro Surgery had their NP come in to remove the stitches but when she saw his sweling, we were immediately sent for a CT which showed the ventricles larger again. So he has probably been uncomfortable all week. The NP mentioned that she thought the shunt might have come apart or be clogged and sent us down to X-ray. The X-ray showed the shunt to be fine and not broken anywhere so that was great news since a break meant yet ANOTHER surgery. So she opted to turn the pressure down. Immediately the fluid pocket went down and within ten minutes it was gone. It has not been back since and he was a pretty happy laughing man tonight at bedtime. Now you can actually see the entire outline of the shunt. We layed him in bed and it did not fill up with fluid so we pray that ends that. We have a tenative appt there on Monday unless it still looks like it does now. They will do another CT on Friday then to see that the ventricles go back down. This is the lowest pressure they have set it on yet so I hope to see some improvement and perhaps talking in the next few days.
Our Onc made some calls to the top Drs who specialize in hard to treat CNS cases and everyone was pleased with his dye study and he had a nice plan of action for us. They have had a handful of other cases who had horrible inductions with many complications and ended up treating them as a standard risk case for three months so they could recover. And then looked at a reinduction phase after that. Our Onc is not even worried about that at this time but is more concerned about just keeping him in remission and letting him heal and rehabilitate. He was feeling just as horrified as we were when the NP mentioned the shunt coming apart and was very very noticibly happy that it was fine. I like this man a lot. He seems to care about Samuel. When he released us from the hospital last week, he called him a special remarkable boy. So now we just need to iron out his head thing again and most likely in two weeks or so they will want to do four weeks of spinal tap chemo but will then test the CSF after four hours to be absolutely sure that there is no high toxicity so we will have no issues with the brain. This entire hospital seems to have a game plan, they think things through rather than fly but the seat of their pants and do whatever. Going there makes me feel like Samuel has a chance. I also like the fact that the docs actually consult with the top in the field without my asking. They come in with a plan which I tend to trust just because they are confident and caring. The first week we were at Childrens, our Onc came in and had a meeting with us regarding Samuel's care and treatment. That was about the second day we were there. He and the Fellow, came in, sat down and I told them point blank that I was not impressed with Oncology and that they were not my favorite people right now. Given what Samuel had been through, I thought they were all a bunch of poisoners and had a hard time even fathoming further treatment. They took that in stride and the Onc told me that when people ask him what he does, he says he poisons children. So we hit it off from that point on. It was really a nice chat because I was able to lay everything on the line and be blunt, rude, honest and sad because these people were not officially my oncologists and I had nothing to lose. As it worked out, we gained a lot. I think they look forward to the treatment for Samuel with as much trepidation as we do so I know they will be careful.
The last night we were at the hospital, the Hemeonc Charge Nurse (Chemo Nazi) came to give his nightly poisoning and we had a long conversation about their kids, their protocols when they get sick vs. just coming in for regular treatments, etc. She thought it boaded very well that Samuel was still in remission after not receiving treatments for 8-9 weeks. She told me that the kids that come in and fly through treatments with no major issues are the ones who relapse later. The fact that his body was so sensitive to the chemo was a good thing in the long term. So that was a nice thing to think about too. I pray it is so, I pray we continue to have doctors who love Samuel and are directed by the counsel of God.
We decided that after trying to actually put clothes on Samuel today, it would be easier to dress him in one piece pj's that either zip or button up. Then there is no waist band to interfere with the ostomy bag. We put pants on him but the bag is in an area where it cannot really be tucked in but doesn't hand out comfortably either. I have several pj's for winter but need to find some light cotton ones for sunner which in his size, should be interesting.
All in all, it was a good day other than the 2 hour commute both ways. We had a good laugh only to be rivaled by another funny while we were at the hotel. On one of the nights Samuel was in the ICU, Mark and I were both able to take the kids to the pool. Our room was on the bottom floor and the pool was one floor up. We were heading for the elevator and passed by a banquet room and heard cheering and clapping. The door was partially open. As we waited for the elevator, Mark pretended that he was going to run in there, pull up his shirt and shake his chest....as if he had breasts to show off, We both laughed hysterically and the elevator arrived. As we were getting on, another man hurried to catch it. We were still laughing at the prospect of Mark running in there when the man said that would be a great way of meeting new people. I was ready to ROFL then. Apparently Mark did have an audience after all....we still laugh about that today.
It is nice to have a good day, to almost feel human again. I admit was was a bit leary and for a second there, it was looking like I needed to pack a suitcase but thank God, his head is okay. I just checked it now a bit over an hour from putting him to bed and it is still just perfect.
Thanks to you fine ladies who wrote me today and sent love, kindness and prayers as well as some info for me to check out. Thank you for sharing the burden, it did feel lighter today. Something about having a good rant and getting it all out can help a lot I guess. As Mary from Mary Bridge would say, Onward and Upward. Let us pray that is so. I hope my baby wakes up and tells me good morning instead of crying. Rehab is supposed to start next week.
Much love and thanks for your continued prayers for us all.
Update 7/29/04
Well, I don't feel like such a hag today. A very intelligent friend reminded me that I probably need 11 or so week shome to fully get back to normal. Another lovely lady reminded me that I need not bear the load alone. So I will try to work on that. I feel better today because I actually got something done even though we were up half the night. Apparently Anna forgot this is home and decided to cry every hour. I could hardly get to sleep last night, something about 4pm coffee...and then Samuel had a sad night as well. I think about 8am I finally got to sleep a bit. Usually I sleep like a dead person since being home and when someone wakes me crying it takes a few minutes to figure out who it is. And we got smarter about the morphine and changed the times to 11pm and 3am as we are always up at 11pm, and now don't have to stay up until midnight although in my old habits, I did. I covered Anna's hammock with a sheet like I used to do at the hospital in the day so it would be darker for her...we called it the Birdcage, and she is sleeping well now. Hopefully that will do the trick for her tonight.
While I was busily being a hag yesterday, I decided to check out this crappy formula Samuel is on. While it is hypo-allergenic, it does not seem to be easily digestible. He seems to be waking up with cramps and gas pain in the middle of the night. They originally wanted us to do a nighttime drip, but we ended up doing bolouces instead because stirring up stomach acid for eight hours seemed stupid when he has bowel issues anyway. He did a little better but not remarkably. So I began pumping milk for him yesterday. I let him try it in a cup but apparently he still thinks it is sick. But there is no way I can pump 50+ ounces of milk for him and feed Anna too so I spent yesterday looking for different options. The one organic formula, Horizon, is still dairy based so does not seem "organic" and we have tried to eliminate milk from our diets as much as possible so that was out. I then started looking at the actual ingredients in our formula. Of course I found the many variety's of oils. This one is 55% corn syrup, no wonder he is feeling sick. That would make me want to gag. No wonder he pukes so much. And then as I go down the line, I see a few ingredients that have names shockingly similar to certain chemo meds he has had. Then I felt sicker. Our formula is called Elecare which is not a usual store brand due to cost. It is horrendously expensive at approximately $30 a can and a can lasts about 2 days feeds. It is not milk or soy based but amino acid based, or chemo and oil based as I saw on the label. So then I started looking up more commercial formulas and could not find lists of ingredients for Enfamil. I did find Good Start and most of those were familliar and more normal, less oddball words. So I did a broad search on infant formula ingredients and hit the jackpot in a big way. I found a ND's site which has recipes for breastmilk substitues for infant formula. Guess, what, they are about 75% milk (rice, oat or soy) and 20% organic carrot juice, and the rest is small amounts of oil or vitamin/mineral,etc. Awesome. That totally made my day. I can actually give hims something to keep him alive that will be so much better for his gut and have a lot more absorbable nutrients. So I had Mark go shopping today to get stuff and his last three feeds have been on the new mix and no gas, no pain, no crying, just a happy boy who today exclaimed "MOM!" Really loud and long when I came to check on him. He rested peacefully after each feed right up until his morphine was due, he gets a little upset around that time. But I am so pleased with this find and that it appears to be digested well. After doing some further research, I found a lot of these ingredients will be really helpful to a person with an immune compromised body. Some of these may have even saved his colon once upon a time...water under the bridge now. But maybe this will help someone else down the line. The true test will be tonight for sure.
We go back to the clinic in Seattle tomorrow for both Oncology and Neuro Surgery. He has to get his sutures removed on his head and abdomen. Onc wants to do blood draws and "talk". Should be interesting to see his liver function numbers. The ingredients in the formula all help liver function and the last numbers he had were quite high before we left. My milk has got to help there too. I was reading about breastmilk and brain development last night as well. I hope my milk will help his head improve. We still believe the shunt is working, but there is a pocket of fluid right behind the shunt that is not going down. Before we left, they said they were not worried about it, but I just wonder. We keep talking about having them drain it while we are there. Samuel definitely notices it and we cannot tell if it hurts him or not. It is hard to pick him up and support his head without touching it. Hopefully it is nothing. He does not seem to he having neurological symptoms but at the same time, seems to have plateaued in recovery. Some part of me feels like every time we go to the visits, we need to have a bag packed, JIC. Ug. I have not left the house since getting here last week. Today is 7 days home, a new record. I hope to detox from this last couple of months soon.
Well bed is calling for now, if you read this soon, pray that Samuel's head is okay and the shunt is still working properly.
Much love and thanks for your continued prayers.........
Update 7/28/04
Well, I have felt like a hag all day. Anna is 5 months old today. Samuel had a good day today. We figured out he was getting tummy aches in the middle of the night with his drip feeds so we decided to give him bolouce feeds like we do in the daytime and he had a better night last night. I even figured out how to set my pump to do it automaticly so I don't have to wake up and try to remember it. I have slept like a dead person since getting home. I really just would like to sleep a whole day I think. Make up for lost time.
I still feel blah. Doing the thank you list has and continues to be theraputic to me. It is nice to see all the names and links. I will have to browse sites since I don't know 3/4 of these fine WAHM's. I am not even close to being done with this yet.
It has been extremely difficult to focus on a task around here and actually get it done. I unpacked my suitcase a few days ago but even that is just sitting on a pile in my room. Perhaps I forgot how to do things here, I don't know. Getting home has been a blessing but I always knew it was easier to just deal with the day to day issues of the hospital than go home where reality can hit you hard. Somehow, coming home just makes it all too clear, life will never be the same for us. Samuel is like having a 30 pound newborn who is severly stiff and sore. He is most happy if you leave him alone propped up somewhere. If you pick him up, he cries. He has been eating a bit here and there but we are sure taking it slow and diluting it with a lot of fluids. I keep thinking for some reason, of the first time we went to ICU with him and he begged to go home. When we were getting ready to go home from Children's, I asked him if he wanted to go home and he said no. I don't think he knew what home was anymore. One of my favorite nurses, Karla, told me when she began working in the PICU, the very first day, there was a three year old with a track and on a ventilator playing on the floor. She said she almost left, she could not handle it. But then she realized that to this child, that was normal. And then she told me that to most of the children who are sick at hospitals, they believe that is normal. That made me cry. I don't want Samuel to think that this is normal. It is not normal for a 2 year old to sit propped up in a bed or bean bag all day because he can't walk, sit and can barely hold his head up. Karla also told me that one child told her that his biggest fear was that God had forgotten him. I cried again when she told me that too. Thank God, Karla was a good hugger. Please pray for the sick daily. On the fourth of July as I was doing laundry at Childrens at about 11pm, there were MANY children dragging IV poles up to the fifth floor to peer out the windows in hopes of seeing fireworks. I called Mark about 5-6 times that night. He and the kids were at a friend's doing fireworks. It was sad. We spent so many holidays at the hospital. I longed to be home for our 10 year anniversary (of when we met, we have only been seperated by tragedy). That day is very special to us since we met and we were together every day from then on. Kind of a sad weekend for me. From my window, I could neither see nor hear fireworks which was good because I just went to bed.
Coming home has been strange in a lot of ways. I wonder if people who have been in a war and come home feel like I do. You have seen things no one should ever see, done thing that no one should ever do, and trying to explain it to someone who wasn't there right along side of you is a waste of time. They will never get it unless they traveled with you. Trying to get back to normal seems unfathomable because all your priorities have changed. There were times while at the hospital I literally wanted to scream, kick the walls, kill the Onc, and felt like my body would explode inside itself. Mark and I talked a bit last night and said we really wondered if Samuel would come home alive after the train wreck of events. I am totally emotionally drained. I feel numb. When I think back to the beginning of this, it seems like six months time has passed. And only time will tell how Samuel will recover for the last few months. That is what is most painful right now. We don't know what kind of life he will have. We pray God will restore him and my grain of sand faith believes He has a plan for Samuel. All I need is a mustard seed of faith, right?
WARNING>>>>>>VENT!!!!!!!!!!!!!!!!!!
I am amazed at how people have acted since we have come home. So in my haggy mood, I will let you know some do's and don't when you are trying to help someone who has made it through their worst nightmare.
Do not assume that because they are home, all is well with the world. Do not call and dump your worldly problems on them. They can NOT be a friend to you, they have enough clouding their brain. They must remove the sty from their own eye before helping you with yours. I say this because certain people here apparently think it is all fun and games here and have no clue that the saga has only just begun. I did not sit around the hospital and twiddle my thumbs. I stayed up most nights because Samuel was always in agony. He was not lucky to be one of the so called "coma-tose" kids in the ICU. He writhed in pain all night and had I not been there, he would have suffered even moreso. I spent most of my days at MB second guessing staff and fighting for his rights. I watched people come and go, I said goodbye to Mark every night and watched him leave to go pick up our other children. Anna has spent 2/3 of her life in a hospital room, She laughed, played, creeped, cried, ate or fussed. Most of the time, they were sad together and I had to choose which one needed me most. I pulled Anna off the breast many many times to comfort Samuel. I spent many many hours cleaning up puke, changing beds 3-4 times a night and just praying for an end to this misery. I called my Mom at 2am for prayer support and that was only two weeks into the nightmare. Little did we know.... I watched my baby be poked and prodded for this and that and wanted to scream but had to hold it in because it was necessary. I watched the IV's pump in poison which is supposedly curing his cancer and wanted to puke, but cried silently instead. I sent him off to surgery 7 times in 7 weeks and I cried as he left every tme and felt like the most horrible person ever. I look at his roadmap of scars that someday he will ask about because with God's grace, I pray he won't recall any of this. I have watched his heart rate at 190 for days on end, while he was sleeping. I saw it hit 220 when his lung collapsed and the docs came in and he was scared of them. I watched his heart rate at 50 for eight hours and no one could explain why. I saw him be completely lifeless and mute, the only thing he could do was to pee in fear when a doc or nurse came near him. I watched an idiot Onc come in and pick his head up and twist and turn it vigorously trying to get a reaction and wanted to kill him, and be sick. Had I not been there, Samuel would be dead now because that fool would not have noticed that there was anything wrong. I watched Samuel have fever chills for 10 weeks. I saw his skin flake off because he had so many fevers. I watched him pick layer after layer of skin off his lips because that was the only thing he could do. I picked him up to hold him and he screamed BED because I was hurting his body by holding him, trying to comfort my own child was causing him pain. I had to leave him for 30 nights, alone in the ICU and sometimes with nurses I did not like. I was treated like crap by a few of them and watched them treat parents who only came for an hour a week like gold. I was told by an ICU doc that Intensive Care meant Intensive Watching and that was the biggest crock ever. No one watched him more intensively than I. Most of the ICU time, I could not even leave to go pee because my babies were crying. I was told one time tnot to bring Anna into the ICU because there was meningitis, pertusis, chicken pox and flu on that floor, yet they wanted to keep my immune suppressed boy with cancer there. I could not take Anna into the ICU at Childrens so I was unable to spend more than a few hours a day with Samuel then. I stayed away from my family many nights in an apartment across from the hospital, just Anna and I. I have listened and witnessed many other children suffering around us. I have heard a 2 month old baby boy cry, sob and gag every night for the last two weeks of our stay at Childrens because there was no mommy there. I listened as young nurses with no children told me that he just lost his pacifier. How my body screamed and arms ached to go hold this poor child. I got a virus prior to his last surgery at Childrens and had to decide if it was better for Me and Anna to stay completly away, devoiding Samuel of his mommy when he needed me most, just so he would not get sick, or wear a mask and wash every other minute to be able to stay with him anyway...take the chance that he could get sick too. Now Mark and I have to go around every night about who is giving Samuel his chemo/poison. I refuse. He forgets....I don't remind him. Parents should not have to make these chioces. Dare I go on? Life is not the same and will never be. Only a handful of people "get it" because I talked to them every day, or they were there.
Do be respectful of family time. Don't feel badly if when the person finally got home they did not call YOU. It is hard to talk to people who haven't been there. A very wise friend of mine told people that in times of tragedy, it is not a time to make friends. Give people space. If you were not a good friend proir, you are not one now unless you have been there every step of the way. I say this because someone called me today and when I answered the phone, the first thing they said was, "you have finally answered my call". Not, Hi, not how are you............. This is not about you. Please don't take it personally. These things do not help and only cause more stress to an already stressed beyond the max person. They do not want to hurt your feelings, they are just trying to deal with their own feelings which only time can heal. And for me personally, I spent a lot of time on the phone at the hospital especially in the end when that was the only way Mark and I could talk, so I am not feeling like talking on the phone a whole lot, which is saying something if you know me.
Things that do help are when you call, asking if it is an okay time to talk, do the person need to do something else? Delma always had a good rule of thumb in tragedy, if you don't know if you should call, let them call you. If you are a friend, they will call, it may just take awhile.
Don't be surprised if the only true emotions you can get out of a person are sadness and anger. These are normal emotions given the situation and do not require medications.
Realize that we all feel helpless. My Dad asked me if I wanted him to come up here several times during the hospital stay. I told him he may as well stay put, he could not really do anything. No sense in everyone being miserable. As I have said before, kind notes go a LONG way. Knowing that people care, people are praying helps a lot. I have so many notes of love and kindness and I hope to someday have the time to respond. I always told Kristina to "have a lovely day for me," while at the hospital. Enjoy your life for me. Love your children, Realize how lucky you are to have healthy kids.
A lot of times the person does not know what they need at that very moment so cannot tell you effectively how to help. Another good friend pointed this out to me while we spent about 2 hours on the phone months ago when this all began. We talked in circles of her asking and me saying I don't know until we actually got somewhere. It was not a free call either. So sending a note saying I am thinking of you, do you need anything, I am praying for you all, is great. It is kind and sweet and non-intrusive and later cherished. Don't be offended if they do not respond immediately. Don't take it personally. They just need time to regroup. I know for a fact that I am feeling really scatterbrained. I have all these things I want to do, people I want to write, but don't get to it. And later down the line, when the person figures out what they need, they will remember who to ask. Don't be surprosed if it is weeks or even months down the line.
Here is a big one and then I will shut up...NEVER tell someone that their child may not be destined to live. That in seeking treatment you are willing your child to live when perhaps they are not supposed to. That is not your call to make. No one has agonized over the care more than we have. I told God weeks ago that if He wanted Samuel, He needed to take him right then and there. Else, He better not allow him to suffer this way and die an early death later. God did not take him. Samuel is a fighter. We were told my many RN's and doctors alike that a lot of kids would not have made it through what he has endured. And had we not been there, he would have died for sure. We went to Children's with what seemed like an insurmountable number of problems. Within three weeks we were home. The staff there told us they had never seen a child come in with this many problems and being that debilitated. Yet, in a few weeks time, it all turned around. Bottom line, the choice of treatment is the parent's decision, at least until the child can express his own wishes. My boy calls out to Mama, not to Heaven, God or Jesus to save him. I can do that for the both of us. Making life and death choices is something no one wants to do and should never be taken lightly.
END of VENT
Sorry, just had to get that off my chest...
I am off to bed in hope and prayer of feeling better and less haggy tomorrow.
Update 7/25'04
We have been home since Thursday eve and how sweet it is. I found I forgot where things were momentarily at times and only just tonight unpacked my suitcase. Samuel was a happy man today. But backing up a bit.........
On 7/19 it was obvious to us that the shunt was working. Samuel was able to eat a little and wanted to and was totally off TPN for the first time in 8 or so weeks. It was so exciting! He was unhooked from IV's for the day and I asked our resident Dr if we could take him out in the wagon for a little fresh air. She agreed, but when we checked with the charge nurse we refer to as Hagola (note, we have had some GREAT caregivers, so when there is a dud, it is SO frustrating...), she would not even look at me when she said no. Due to his MRSA positive test back on 5/4, they though he had a staff bacteria, we have been quarentined and treated like we have the plague for the entire time we were in the hospital. Hagola told us that we could not go out of our room at all. Nevermind that he went out of his room three or more times a day for tests, etc. So I told her our resident said we COULD go out and I was getting a wagon in 15 minutes so if we could NOT go, she better get someone in to explain to me why a little sweet two year old baby who had not seen the light of day in almost three months could nto go outside for ten minutes. It was ludicrous. Lo and behold, our new Onc, Dr. Hawkins appeared a few minutes later and had written an ORDER that we could leave our room if we followed the MRSA standards. I also asked if he could be taken off ALL monitors then and he agreed so Samuel was unhooked from everything. I then told them that I wanted to go home Thrusday pending the CT on Monday being improved. Dr. Hawkins said he was running out of reasons to keep us so that seemed doable. They were also very impressed with how well Samuel was holding his tube feeds down and more impressed that he wanted to eat which NO ONE even talked about until he ate This was Samuel's first free day and seemed magical, like there might be an end to this mess in sight. Mark took the kids home that afternoon and intended to come back Monday morning.
My Mom came for her usual day on Sunday. Samuel was quite sad most of this day. After spending the day trying to figure out what was wrong, we determined that he was still in need of pain meds from his 7th surgery on Thursday. Hemeonc was called and another resident on call showed up and gave him a generous pain plan for the night and suddenly he was a happy man. My Mom left and he told Anna "night night" about ten times, and then in the middle of the night said "quack quack" and "nose". Besides Mommy or Momma and Uh Uh, these were his first few words spoken. I felt like a Mama who just heard her baby try to speak. I was so happy, I called everyone who cared to tell them. He was such a cutie that night.
Monday showed improvement for the first time with the shunt. We were thrilled. He was also eating more and more by mouth so Mark and I were very happy. Everyone who came in our room that was staff was informed that we intended to leave Thursday. They were all planning for us. It was very exciting.
Tuesday he had his Systernogram, or dye study of the CSF flow and his bone marrow. THese both went well with CSF flow showing normal and the bone marrow in remission. I was not happy about either of these tests but he coped VERY well. Mark went home with the kids to try to prepare the house for us to arrive. We chatted several times that night about whether or not we should have packed up the hotel room and if it was really going to happen or not.
Wednesday, he got up and went at 8am for another Nuclear Medicine study. I was alone so went with him and Anna too. Later, a NP came into turn down the shunt pressure and he had to go to X ray to see if she did it right or not. Anna was sleeping so I did not take her thinking it would be a quick thing. But when we arrived, they could not figure out how to do the X ray so we ended up waiting. Then they wanted to lay his head cockeyed which annoyed me greatly since he was still very sore. A tech told ME to tell HIM it was okay and I was livid. I told her it was NOT Okay and I was not lying to my child anymore. None of it was okay. She apologized later. I had had enough. No more tests, no more surgery, I did not consent to ANYMORE. Of course when we arrived back at the room, Anna was up screaming. UGH! Nuclear medicine decided to do one last scan with the shunt at it's normal setting. It was fine, everyone was happy. No phsuedocyst in his abdomen, thank God! We were cleared to go home by the Neuro Surgeons. It just seemed surreal. Later, the home health team came into teach us how to use the pump for his NG feeds. Then physical and speech therapy came in. It was a busy day and most of which I spent alone juggling both kids. Mark came in the afternoon which was a relief because it was a busy day.
We were both very pleased with Samuel's eating that day. He ate a huge bowl of Cherios for breakfast and had some yogert for lunch which ended up being more calories than the tube feeds so we held off on giving them. He had his 3pm feed and then we decided to take him out in the wagon. He had no sooner did one lap around the floor when he threw up all the feed. We then realized he had pulled his NG tube out which started the gag reflex and out came the food. Interestingly enough, we had discussed what we would do if he did this at home and came to the decision that Mark should learn how to drop the tube. But when we got our dinner, Samuel ate a whole banana and a whole grilled cheese. We were very elated and began to question whether or not he needed the tube at all. Our RN, Chirsite called the Resident to help evaluate is diet since he had eaten more than most of the kids on the floor. We were reluctant to drop the tube since he had just eaten and we did not want him to throw up again. The Resident agreed to wait and see how he did over the night and the next day, if he continued eating, he may as well not have the tube.
At any rate, we had the stuff and still wanted to learn how to drop the tube so we elected Hagola as the test subject. Christie laughed and even called her in............she declined, however. So the tube was left out over night. Sadly, the grilled cheese came back to bite us in the butt since it balled up in his gut and gave him a blockage. This resulted in another sleepless night for me trying to help him. By morning it was apparent that we needed to drop the tube and give him some fluids since he started puking up stomach acid over night. Our lovely nurse Esther, taught Mark to drop the tube which he did the day we left. We asked again for Hagola to practice on and Esther even laughed....
But Samuel was miserable that day with cramps. We were really upset as well so going home was a bit bittersweet for us.
The pharmacy came in to give us his meds to go home with and someone forgot to order Zofran for him. This is an anti nausea. We decided to just have them call it in to our local pharmacy vs. wait for it there. We wanted to hit the road in a big way and it was already 2pm. Samuel promptly puked in the wagon we put him in to leave. He was a sad man on the way home, having cramps and pain. Marked played with his window to see if he remembered rolling it down and he did so this was a nice distraction. We finally arrived home about 3:45pm and I wanted to get some Pedialite into him. He had not peed all day. We came home on the hottest day of the year, 102, and we do not have A/C so it was HOT. I started his liquids and within five minutes he began puking up stomach acid again. I was more upset then and could see visions of us back at the hospital the next day. Mark went immediately to the pharmacy to get the Rx for Zofran. Meanwhile, I continued to clean up puke and Anna was very unhappy. The kids were at a friends at the time so I had no help. Mark called me from the pharmacy and let me know that Zofran is NOT covered by our ins because it costs a $1028.00 for the RX. Yes, you read that right, a grand. They were calling Childrens to see if they could substitute something else. I was not happy at all then. So that was a big run around which was finally settled with Tonya from my ins. pushing it through the next day for us. She is a Godsend and a blessing because there was a lot of paperwork involved which "usually" takes 24-48 hours to process and of course it was a Friday when they got it...our usual luck. Thanks to Tonya for caring for Samuel, yet another person who has not met us who helps in any way possible.
I suppose that when I wondered whether God had forgotten us, I just needed to make my thank you list. There you can see the provision, the supernatural favor we have had throughout this mess so far. God has surely led many to help us in this crisis. He never forgot us.
Anyhow, when it became rather obvious we were not getting any anti nausea meds, I went back to my old staples, Mint Tea and a little prayer. I ran a little tea down the NG and he seemed immediately relieved. A little more down and maybe I was too eager, because he puked. I did not give up hope, I gave more and more in bigger doses and added my lovely friend, Dawn's warmed Cherry Pit pillow to his tummy and suddenly, the grilled cheese started coming out like crazy. He stopped puking and I was able to start his feed that night and it was fine. The next day he was fine, only puking once or twice but mostly getting his feeds. We will not be albe to get the Zofran until Monday as the pharmacy had to order it. He was a bit crampy yesterday but we got through that. It was a hard lesson to learn at his expense. I started adding Papaya juice to his formula and he did better. I am sure that the Docs would croak if they read this but these things WORK and the less meds in, the better. Today he was a happy man most of the day. All is worked through and he ate some cereal and yogert and was fine.
He loved the tub on the first morning. He slept at night just great. We have to get up at midnight and 4am to give him his morphine but other than that, all is well. I can finally sleep. How great is that? Anna seems to know she is home and is a happy girl as well. Probably because she spent some QT with Kaysha and Daniel in the last three weeks so is used to them.
Samuel has physical and speech therapy starting next week. He sat in my lap today and held his head up well though tired quickly. He also sat on his own for short periods. He was first afraid to have his feet touch the floor or even droop down, but got over it and now sits in his bean bag fully supported with his feet on the floor. He played peek a boo and even tapped his hand to the Blues Clues anthem today. All little improvements. Still not talking much though but we know he can. Hopefully he will want to soon.
We spent much time cuddling him today. Everyone plays and entertains him so he is never bored. He just looks happy now. I pray he will become unsatisfied in his bean bag soon and want to get out.
Much love and joy to you all!
Ode to Being Home 7/24/04
I can sleep through the night without a nurse waking me every four hours.
I am not awakened by another mother's baby crying only to find out that it's mother is NOT there to comfort it.
I can sleep with Samuel AND Mark at the same time.
I don't wake everyone up flushing the toilet in the middle of the night.
I don't have to turn off or reset IV alarms in the middle of the night.
I can listen to music at night rather than banging doors and nurses jabbering.
I can go to bed when I feel like it and don't have to wait on a nurse to hang TPN.
I can get up when Anna wants, or when Samuel wants, but not when the first doctor makes rounds,
No one rips tape off Samuel's head at 6:30am.
I dont' have to worry about Samuel getting a nice RN, I AM his RN and he is NOT afraid.
I can wear my PJ's until I feel like getting dressed.
Samuel can go into more than one room.
Going to a new room does not mean I have to pack all our crap up and move it again.
Samuel does not have to fear that a trip out of his room either means that a body part will disappear or one will be added.
I don't have to call Mark on the phone, he is already here.
I don't have to call my kids, they are here too.
I can tell my children goodnight in person, not on the phone.
I don't have to say goodbye to Mark and watch him go home.
I don't have to cry alone.
I don't have to figure out who will watch the kids today.
I don't have to care for two babies alone.
I have caller ID AND call waiting.
I don't have to dial 9 to call out.
Calling my home is NOT long distance.
I can talk on the phone without being interrupted by a doc or nurse who is about to traumatize Samuel.
I can take a nap if I want to.
I don't have to get dressed to get coffee.
I don't have to walk a mile to get a latte or eat a meal.
I don't have to starve because the hospital food is so bad it is not worth the mile walk.
I don't have to starve because both of my babies are asleep and I am afraid to leave the room for fear I will come back to them screaming in terror that they are alone.
I can go into more than one room that I own.
I am not living out of a suitcase.
I can wash clothes daily.
When I leave Samuel alone, he knows I am coming back and is not sad or afraid.
I can go to the bathroom without wondering which doctor will walk in while I am trying to go.
I can eat without a doctor interrupting my meal.
I can eat ice cream whenever I want.
I can have vinegar water and organic foods that I prepare.
I can eat at a dinner table with my family and the food is good.
I can be with all my kids all the time.
My kids do not have to be supervised 100% of the time.
We are not all crammed into a tiny room.
We don't have to go anywhere anytime soon.
I can take a bath twice a day with my babies.
I don't have to pull teeth and plan with IV therapy to be able to put Samuel in the tub.
I can hold Samuel any time I want without calling a nurse for help.
I can fix my hair and put on makeup if I so desire.
I can get time for myself knowing my children are happy.
The kids can play and run and yell without being told to be quiet.
I don't have to hear them pray for a normal life where they live at home anymore.
Anna might figure out that home is not a hospital room.
The kids can get to know Anna and she can get to know them.
Anna can wear cloth diapers again.
I can give Samuel his meds, see that he is fed and do it all without trauma.
No one takes Samuel's blod pressure.
I can stay up until midnight knowing I will sleep until 8am or so without interuption.
I can check my e-mail without waiting in line and walking a mile to get to a computer.
I can read my computer screen without a magnifying glass.
I can clean my contact lenses without fear that I will be making a late night ICU trip alone blindly.
I can do what I want, when I want for the most part.
I can go out side as much or as little as I want.
People who enter my home do not have to gown and glove up.
Samuel does not have MRSA at home.
I am not constantly on guard, fighting staff or doctors.
I can go shopping, I can get my hair cut.
I can relax if only for a little while.
I can do nothing, or a lot of things
I can have a thought that is my own.
I can take it all in.
I can take care of myself.
I do not feel lonely or alone.
I do not feel like the other shoe will drop.
I am off of the roller coaster.
I can stop to smell the roses.
I might be happy again one day.
I might enjoy something soon.
The numbness may soon wear off and I might feel normal again...
I look forward to that.
Update for 7/21
All is still well, Samuel is done with all his tests and just needs
to get through the night. NOt so much because they fear he is
unstable but more because they need to get all the final plans in
line for our home care. Mark took a car load of stuff home
yesterday and is here to stay now until we leave. We can hardly
believe it. Samuel's bone marrow is still in remission. We will
have eight lovely days home and then we have to go back to the onc
clinic for a visit and "to chat" with the docs, LOL. OT, PT and
Speech have been called in to come to our home for therapy. We have
been taught how to do his feeds through the ng but he ate breakfast
and lunch today like a normal toddler so we may not be doing as many
ng feeds as they think.. We simply cannot imagine what it will be
like to load him up into the car and go home...it seems surreal. I
cannot wait for tomorrow, I am sure it will be an emotional day for
sure. The staff here are excited for us as well. What will it be
like to go home WITH Samuel, to see him in his car seat riding with
us, NOT in an ambulance. To sleep with him, to see him AT home...to
see him finally NOT afraid in his own surroundings...joy to the
world. Thank you again to all of you who continue to care for my
sweetest man.
Much love.
Jen
