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.
