3/4/05
Once about every few months or so, I wake up and suddenly notice how much Samuel has seemingly learned overnight. His vocabulary has again exploded and he has been more able to tell us and show us that he understands what is going on around him, as well as things that happen to him. Today was no exception.
Our clinic visit was uneventful. His labs looked great. WBC is 6600, PLT 566k HCT 37.1 ANC 3300. All blood chemistry was good as expected and his weight is back up to 14.7kg. The staff who know us always seem amazed at Samuel's energy, and those who knew us back in July are often taking a double take when they see him running down the halls like he owns the place and yelling and playing with A.D. Of course, if you saw the waiting room, you would know why it does a heart good to see a child happy there. Most of the kids come in in strollers, wheelchairs or are just slumped over in a chair. They look like they just got run over by a semi. I listened to a conversation between two moms about their son's treatment plans for their brain tumors while their kids zoned out. They probably thought Samuel was there for an off treatment follow up or something. He does not look like a cancer kid and I am thankful for that. A RN called a boy back to access his port and Samuel mentioned to me that he was going to go "get his port." This was the first time he has ever spoken what heppens here out loud. So when we went back to do Samuel's port, for the first time ever, he never cried, worried, nothing. I hardly had to hold him down while the lady stuck the needle into his chest. He always worries about it, and wimpers but when they do it, it seems like accupuncture, he does not even notice. He was a bigger pain to get weighed and vitals done but I think that was because he was busily running around the halls and they interrupted him. I could tell we spent some quality time roaming the halls because he really thinks it is his second home. When they removed his port later, he never fussed about that either. Usually he hates the tape ripping that is involved with getting it out ut he never cried. It is amazing how much he seems to understand suddenly.
The visit with the Onc was pretty much as expected, he is happy that Samuel is doing so well and that his surgery was a great success. he was also appreciative of his new G-Tube which he said looked really good. We did not talk beyond the chemo done today which was Methotrexate. He got 100mg in January and 150mg today. The next dose will be 200mg in ten days assuming this dose is tolerated well and he does not get mouth sores, or have his ANC fall below 750. The main thing was to push fluids over the next 48 hours and if we cannot keep them down, to return to the clinic tomorrow for IV fluids. I don't see a problem thus far. We don't return to the clinic now until Monday March 14.
The Onc came in and said Hi to Samuel who immediately said, "I want to go home..." The Onc told him that he was sure his mommy (me) wanted to go home too and then commented that we were able to stay out of the hospital for awhile. Not really, IMO. A few weeks is nothing, I think forever is a good number. I told him that while HE liked to be there every day, we did not. Mark said that I was at least a little better today about being there and the Onc said that he did not figure I would be happy until about 2.5 years from now when we might actually be done. Reality check. 2.5 more years of this crap. At least if we ever get to the Maintenance phase, it will be a matter of going in once a month.
At any rate it was a long day there mostly waiting around. The Onc mentioned that last Friday they saw 87 patients in thei clinic. He could not figure out how in an 8 hour period they could do that. He asked the ER doc how many they see in a busy 24 hour period and they said 120. So it is no wonder we feel like everyone rushes about and you never get to know anyone. They don't have time. And isn't it a shame that 87 CANCER patients just HAD to be there on Friday? What is wrong with this picture? We left the house today at 9am and got home at 3pm. I am tired. Tomorrow we will have to do damage control on the house since it is all anyone can do to just function upon arriving home.
Samuel is feeling well, and he got in the tub with me tonight and asked me to wash his hair. That was a first. He had a great time swimming and splashing. Anna was in the tub too and they were able to play together in the tub for the first time. This was not possible when he had the NG tube because she liked to try to pull it out. They were really cute.
I pray that restarting chemo won't pop the balloon of normalcy we seemed to get for the last two weeks. It was really nice to feel like part of the human race again. I hope it is not too much to ask for NO MORE COMPLICATIONS! I am tired. I am going to bed now. Thanks, as always for your prayers and love as well as the many welcome notes from folks noticing that we have begun working our biz more regularly again. Thank you for your patronage and friendship. Our love to you tonight.
3/1/05
Yesterday was A.D.'s first birthday. We took her out to buy some new jammies and a few new pairs of shoes. He hasn't worn shoes yet and did not have any. Should be interesting. We figured we should get a start on the shoe wearing soon. Samuel has only just NOW gotten used to wearing shoes. We don't even get him dressed beyond tee shirts in the daytime else he thinks we are going somewhere and stands at the door screaming that he is ready. The minute he gets shoes on, he is ready to go whether you are or not. We did not have much of a party. Kaysha and Daniel got colds last week which was one of the reasons I called off our clinic visit. Let them go around people and look what heppens, they get sick. Thankfully the rest of us have been fine so far...knock on wood. So other than taking A.D. shopping and doing the normal things, there was no party. Family members from both sides called to see when the "party" was but we still haven't decided. I don't know if we are numb to holidays/birthdays now or what I still don't know what we are doing. Not that she doesn't deserve a day because she does. I guess in a way, every day we are home and Samuel feels good seems like a holiday and it is just such a joy to see the kids play, and get a long and enjoy each other, what more do we need? She doesn't really know Mark's family and most likely does not remember my Mom anymore either. Strangers make her nervous. A.D. has been a little angel ever since I got home from the hospital and has been treated as such. So I don't know what we are doing, if we are doing anything. We will see when Kaysha and Daniel are better.
I spent the night of the 27th rereading A.D.'s birth story. Wow, I had forgotten some of the details and as I read it I was ROFL in some parts and a bit surprised that I put in SO MANY details which are even more amusing now. I am glad I was so articulate because I had forgotten so many little things that happened. We truly did not get to savor her birth, or her first year of life. As I skimmed some of the small journal I kept for A.D., I was amazed to read how much of the time Samuel was sick with some cold/virus, something. Looking back, one can see how the white cells stopped working very early last year. Makes me wonder if the leukemia started about the same time he weaned from the breast. Interesting anyway. Sad. Another thing that stands out in my letters to A.D. was how much I wanted her to be Samuel's friend. Now, a year later, she is indeed that. Watching them play together and knowing the bond that they share is really an incredible thing. Samuel is the perfect big brother (when he feels good). He is kind, loving and shares pretty well with her. They hug and kiss ALL THE TIME! She follows him and dotes on him the whole time she is up. He likes to run from her and say, "A.D's gonna get me...." They sat in Samuel's bed the night before her birthday and watched a WIggles show together. Samuel knows all the songs, all the dances but A.D. is learning fast so they sang and danced together on the bed. And we wonder why they grow up thinking jumping on the bed is an okay thing to do. Anyway, as they played and enjoyed being together I thought of how perfect our family is. Two older kids who are good playmates, and now two younger ones who will most likely be even better playmates. Kaysha is a little bossy...okay a LOT bossy to Daniel. Anyway, going back to my original thought, when Anna was born, we did not have a lot of "stuff". She did not get a lot of "stuff." What was most important was that she was loved, had good food, was clean and had clothes. All the "stuff" doesn't matter. And honestly, to a one year old, isn't this still true? I think now, and I mean right now, we are bonding with Anna and getting to know her more than we ever have. She was shortchanged all last year and there is nothing we can do about that. I hope that this year will be her year to shine and feel joy. I just want to love her more, bond with her more and remember the reason I wanted her in the first place. After I had Samuel and experienced the joy of loving a little tiny baby again, I just had that urge to do it again, at least one more time. And I did, I had Anna. But somewhere in the misery of last year, we forgot that and honestly just did the bare minimum with her. There were so many times I just had to put her down, let her cry, to take care of Samuel who needed me more, and I had no other choice, there was no help. That is not what I want her growing up thinking about, taht is for sure. So I guess, the stuff, the party, etc, really mean nothing to me right now because she is not going to care about it and she needs so much more from us than one special day. She was calling me Mama tonight, which she has done for quite some time, but it struck me funny because I thought, now here is little Delma, calling ME Mama. I see a little Delma in her eyes, the way she sucks her bottom lip in when she is thinking.....
Samuel is still doing great and dare I say, things feel almost "normal" around here (knock on wood, again!) He has done well gaining his weight back and we can't feed him enough it seems. Course all he wants to eat is chips or cheese so thank God for the G-Tube. We are back into a semi routine which I think makes a lot of difference in how normal things seem. Other than Samuel's air bag still exploding every day, things are good. We still can't keep a bag on him but now I think it is because we cannot keep him from climbing all over the furniture or jumping on the beds or running up and down the stairs like a madman. He has just went nuts in the play department it seems.
Things feel calm, non-emergent and just relaxed here. We did some spring cleaning this week because it seems we are busting out the seams. All stuff I should have done last year, except I did not see my house much then. We are trying to figure out how we can make this house work for the time being even though we are out of space. Moving the rooms around again has it's benefits, but no one wants to do that since that is almost as bad as moving out. Of course I would rather move out, but we can't do that right now either. So the discussion continues....
We return to the clinic Friday. Our Onc called me last Friday after I informed them we were not coming in just to "chat" when my other kids were sick. I would be livid if someone brought their kids into the waiting room coughing and sneezing when Samuel had no ANC and did not feel the need to do it to someone else for no reason. I told the Charge Nurse that we were only supposed to chat, and that if he wanted to "chat" he could call me. So he did. I figure that at some point they are going to get annoyed with me putting them off, but the Onc was very friendly and said he was excited to see Samuel this week. Pretty much there wasn't anything to say. Remove chemo from the equation and look at the improvement. We did agree that chemo would be given this week assuming that Samuel is not sick from Kaysha and Daniel. This, of course, does not impress me and I am trying to rectify my mind to this before I go in. A few people have either met us at Childrens, or expressed interest in meeting us there in the future and I keep thinking I probably don't make a great impression since I am usually NOT in a good mood there, LOL! Anyway, I keep thinking of the ND's discussion with me in getting Samuel whatever treatment he could tolerate within reason to get a "durable remission." This ND also told me point blank at our first meeting that the Oncs at Childrens could cure Samuel and that diet or herbs, etc, alone would not. I do think that chemo is a part of the cure, but not the entire cure. Obviously it is not 100%. I just don't understand why Samuel cannot be one of those kids who has "normal" things happen, not unheard of things. I don't even know what our treatment plan consists of after the next 8 weeks because so many poisons have been crossed off our list. That makes Oncs nervous, and makes me happy. The argument that if we don't start chemo, such and such will happen, or our cure rate stat will go down, does not even work with us. I can tell by the reaction I get when I say, "he is NOT getting chemo today," that they don't hear that very often. When I say we are not coming in on such and such day, they say they have to "ask the Onc". What is he going to say? Come in or else? I think that by now they figured out that doesn't work with us. Oh, and I am so not looking forward to just getting Samuel better and then poisoning him again making him feel worse. Possibly killing off the intestinal lining that is now healthy and back again. I am less than thrilled. On the flip side, I am happy that I have an Onc who seems to think that Samuel has a good chance even though I believe he is healed now. I have a lot in my mind I am trying to right so I don't go in there with the same chip on my shoulder. I am on an ALL Kids e-mail list in which there are several kids who were diagnosed with ALL after Samuel who are now into Long Term Maintenance and I cannot believe that we are really only 3 months into his treatment. In the last 10 months, he has had 3 months of treatment. We still have 4 months to go before we get to the Long Term Maintanence Milestone. Ugh! I am going to call the ND's office and see if I can schedule a phone consult with him to discuss the chemo issues I have, the little treatment Samuel will get, etc and how we can make sure he is covered if there is anything else we can be doing. It is hard to trust anyone right now, but at lesat the ND put us on top priority when we were inpatient and did not charge me for the phone time, told me to call back for anything, no charge. So I guess a person who is not out to eat every niclel and dime I have, is trustworthy. OTOH, he thinks that the lady Onc whom I hated, is a smart person.......hmm. Anyway, lots of clutter in my mind, trying to get it all worked out so that maybe the joy I feel just being home doing my usual things won't escape me the minute we get into the care Friday. Is it too much to ask for smooth sailing at this point? I am really just relishing the calmness of life right now. Not worrying about poison that was given and what it could possibly do next....
I was laying in bed tonight with Samuel and he asked me if I was tired. I said yes. He asked if I was sad. I said I was a little sad. He started crying. He gave me a hug and said "It's not gonna hurt, no owies...." How much of this do you think is sinking in? That is usually what the RN's say to him and he repeated it to me tonight, why, I don't know. He thinks about it, even at home. Me being sad reminds him of the hospital I guess....
We appreciate your love and prayers! Thanks so much for checking in, much love to you today!~
2/24/05
It has been a nice week and a half at home. The kids have had some kind of "party" every night. Pajama, movie, popcorn, everyone pile in Samuel's bed, you name it. They have really been cute together and have had a lot of fun. Every day since we have got home has been sunny and nice though pretty chilly. We got out to take a stroll around town and hit two parks along the way. The last time Samuel had been to either of these parks was before he was diagnosed. He had a great time running around and I kick myself because I forgot my camera. We all got out of the house to hit the market which I don't think I have seen for a month again. Every time I get into the car, I just want to go somewhere. Get out of here. It never happens.
We have spent the week trying to get back to some sense of normalcy again. Seems like I just get into a great schedule and then something happens to throw it all out of whack. Things like the surgery from earlier this month are the reasons why the kids are not enrolled in any outside activities though we flirted with the idea of putting Kaysha in gymnastics for a few months. Thankfully we did not waste our money there. I guess everything will just have to wait until the fall at this point, especially if it costs money, and then we don't show up. It is frustrating because they want to do something, and cannot. We did manage to get in quite a bit of school this last week which makes me happy. Kaysha will be taking the SAT this year for the first time and I am now trying to prepare her for that. Daniel is starting to read. He is pretty much ahead for a kindergartener, but Kaysha's math is behind for a third grader. OTher than that, she is well ahead as well. I am now kicking myself in the butt for not pulling her out of private school the minute we noticed a problem with the teacher. We thought then that it would be detrimental to her to pull her out mid year. Now it is so obvious we should have because I am still trying to break bad habits which were learned there.
It is hard to look at a calender and figure out where we are. What I mean is, I was figuring that Samuel would start his Delayed Intensivication Chemo in March and e done by late April. It is screwing me up on planning things but I guess that the way it is now, the next two months will be more relaxed for the holidays, birthdays and anniversaries which are coming up. We go to the clinic tomorrow, which I dread. When we were inpatient, I actually avoided that floor of the hospital as I tool the nightly stroll. We did go through there maybe twice when it was closed and it still just seems like a hopeless sad place. I don't feel like we belong there. I don't guess I ever will. I am usually excited to see Samuel's labs or hear what the Onc has to say but tonight as I write this, I simply don't care. Mark and I have talked a bit about when to restart chemo, how we are going to get through the next intense phase, etc. It all pretty much sucks. We know this, NO chemo tomorrow. I am not used to having a boy who is not in pain 24/7 yet. I think another week of him feeling good would be nice. As far as I am concerned, tomorrow is just going to be a waste of a day. I think I am still bitter. I don't trust Oncology.
Samuel has been feeling great. No running around crying, no worries about thw stoma, his tummy hurting, nothing. Now the main problem is making sure he has enough to eat. The stoma is working beautifully. The way it is attached is completely different than the previous stoma. It does not pull in, it does not cramp, it just works. Apparently freeing the intestines from the adhesions and kinks was just what the doctor ordered because it seems NOW Samuel can eat anything he wants. People told us he could eat whatever he wanted before we left Childrens last year, and we found out with the grilled cheese that that was not going to work. Samuel could not eat cheese...period. It always got stuck. Now, he can eat cheese like a madman, and he is. NO problems. So I guess kind of like the shunt, once it started working right, it was VERY obvious. If it ever fails, it will be VERY obvious. His gut is working very well. It will be very obvious when it isn't. Kind of makes me wonder if it ever worked right before. I am now kind of glad that they revised the stoma and fixed his intestines first, rather than hooking it up because we can now see what it functions like normally. Plus with the pancreatitis it took it SO LONG to come back, I am glad we did not add that problem to the mix of hooking him up too.
Not much else to report, no drama, we like it that way. Just taking it easy over here, trying to sort out the next few months and how we will survive. Special thanks to April for the BIG package. Kaysha loved the wand! Everyone enjoyed their toys. Thank you for the gift to Mark and I. Thanks to whomever sent the wooden duck on wheels, the hospital forwarded it to us this week. Much love to you all!
2/18/05
It is so nice to be home, have I said that lately? The first night I slept in my own bed I woke up in the middle of the night and did not know where I was. Anna was crying but I thought it was Samuel and could not figure out where he was. Took a minute to figure out it was Anna and not Samuel. I slept in the hospital bed with Samuel 13 of the 15 nights we were inpatient and it was strange to wake up without him next to me. Strange, but nice.
Coming home is always strange. I went through the fridge and cleaned out and threw out most things purchased over two weeks back. Now all rotten. Veggies, leftovers, etc. After that, there was pretty much no food in there. Clean up the house, get stuff back in order, I still haven't unpacked my suitcase. I might get to that tomorrow. We have just kind of lazed around a bit, doing stuff here and there. Hard to get back into the swing of things, almost overwhelming when you need to cook, clean work, etc after you have sat on your butt for a few weeks. The house looks funny, my bed feels really good, I don't want to get out of it. I took two baths the day I came home. I really missed my tub. Samuel has to wait until Tuesday of next week to bathe but he has showered a few times since arriving.
Samuel has improved in leaps and bounds after coming home. They sent us home with a lot of pain medicine which we have hardly needed due to the distraction factor of home. I knew it would be this way. That was one of the reasons I tried to take him for a walk every night I could while inpatient. It only did not help one night while there. He has hardly complained about his tummy hurting and had finally been able to eat his "normal" diet. It is so nice to be able to let him eat and not tell him he can't. When we got home for the first day or so, he had diahrrea but now his poop is more like applesauce resembling the way the ND said it "should" look. His stoma is shrinking and looking more normal and it is obvious that his food is being digested now. He is feeling good and running all over the house. Kaysha and Daniel have had the "party" in his room every night since he came home. Cuddling in bed with him, reading him books and watching movies. It is so cute and he really enjoys the attention. He has been very affectionate with Anna and plays chase with her. They are adorable together.
I swear Anna grew up a lot in the time I was gone. Suddenly she has a personality. Or maybe it is just an improved personality. Something. Used to be, she ran all over the house screaming most of the day driving everyone crazy and now she is just a happy little girl playing, dancing and laughing. Before, it was like she did not fit in and now suddenly she has found her place. I feel like I have never really bonded with her and now suddenly I am able to bond with her. I missed her and she missed me, that is obvious. Her smile is infectious and her giggle is precious. Mark cut her bangs while we were gone and she just looks like a little lady, rather than a little baby. She is our only baby who ever bonded with a blanket. She HAS to have the "Angel Blanket" from Carla in her hammock to sleep with. Lately, if someone does not put her to bed when she is ready, she will go find the blanket and curl up with it on the floor. Today we found her on the floor right next to her hammock sleeping with the blanket. I don't think we have ever had a kid who knowingly put themselves to bed either. Anna is finally adjusting to our unusual lifestyle. I guess she finally decided it was better to be home than in a hospital room because on several occasions when Mark brought her in, she screamed the whole time she was in the room, and the minute we left the room was happy. Hard to believe she will be turning one this month!
We were looking at the calender trying to figure out what day it was, then looking at what day her birthday was, and then flipped ahead to see when my birthday was. Seems Easter and my birthday are on the same day this year. I hope that as Jesus rose from the dead, we too, shall rise up above all this mess and go on to a greater glory. I can't help but think these two days being one in the same this year is a sign of the good things to come. A very special friend and pastor sent me this note while we were in the hospital..."God knew what He was doing when He gave Samuel you as a mother. I trust that when this is over, like Job, God will bless you with twice as much as you had before (Not necessarily children, but if you want them, that too." I told her I will hold onto that as a prophetic word. Honestly, I just want life to slow down, so that we might enjoy it a little. Right now there is so much to do, so little time. We went to Costco today and while in line to check out, an older lady commented that I must have my hands full with two little ones, pointing to Anna and Samuel. I don't know if people say this to be friendly, start conversation, or what, but my kids were being angels at the time so it wasn't due to them misbehaving. Anyway, at that moment that she said that, I thought, "boy, if YOU only knew..." But I just said, "yes, life is busy, but we are VERY blessed, and VERY lucky." We are. I hate this situation, that this has happened to us, but I would not trade my place in this life for anyone elses.
As I process all the last few weeks in my mind a few things stick out. Mainly, that in the last 10 months, we have been tested on every level. We have had to make horrible decisions, have horrible discussions, and do horrible things to our baby all in the name of cure. Mark and I have had some conversations where he was so far one way and I was so far the other that I did not know if we could come to an agreement. Yet we did. I am so proud of us, as husband and wife. I am proud of our family for conquering hurdle after hurdle and staying intact. Right now, I feel like we are on the top of the mountain, enjoying the view, resting from the hard climb. Looking down on all the territory we have come through. It is a nice resting place. But as I look forward, I just see fog. We have no clue what we are in for. But I know we can make it as long as we do it together. Mark once told me "if we can get through this, we can get through anything..." He said that while we were still at our former hospital back in May or June of last year. We got through that awfulness and we will get through the rest. I am so lucky to have Mark. Staying inpatient alone was hard, especially when things are not going well, etc. I think I used over 2000 minutes on my phone card in the amount of time I was there, and most of it was with Mark. One RN who has gotten to know us this past year asked how Mark and I were.... Hey, we are GREAT! Our life kind of sucks right now, but we grow stronger day by day. Back when we got married, only ONE person believed in our marriage. Delma. I think she would be proud. The anniversary of her death is the day before my birthday, and now almost eight years. I still miss her like crazy. I get my fighting spirit from her. If you wanted to know what is what and not get any BS answer, you ask Delma. She will tell you straight. There just aren't enough people like that anymore.
The other thing that keeps passing though my mind about the last few weeks is how much the situation could have been changed for the better if the Oncs would have bowed out when asked. But instead, they were chomping at the bit to give Samuel chemo before a major surgery and now we know WHILE he had pancreatitis. I am so glad I put my foot down on that one. Reminds me of a time way back when.....when I asked for chemo to be held on a Friday until Monday just because I did not think Samuel was doing well. Monday we found out that he had the hydrocephalus. Firday's spinal tap would have killed him. I don't know what the reprocussions of chemo would have been on the pancreatitis, and don't want to. Glad I don't have to find out. I am so thankful to everyone who prays for our wisdom as we go through this. I have learned to listen to that at least. Thank you for your prayers, they DO make a difference.
Of course, our Onc showed up on the day we left to see how it was going and con us into coming back. I don't think I saw him for about four days before the final day inpatient. Of course, as he walked in I was blabbing to Esther our RN, about the Oncs and my general opinions etc. I don't know how much of it he heard but it could have possibly been one of those foot in mouth conversations except that I pretty much told him the same things the week before. He wanted us to come in next week for a "progress check" and to "talk us in to treatment," since he knows that will be some work, he wants to start early...LOL. Someone called and wanted us to come next Tuesday but I moved it to Friday. So we have another week to be home. We are not planning to have any chemo next Friday either. We will see how his stoma does, how he looks, acts and get some weight on him first. His weight was 13.6kg the day we left.
After the Onc handed our care over to Surgery, it was amazing the difference. Nice to have RN's who know you. RN's who care enough to check the website to see how Samuel is doing. We had a few RN's who did not know us but when a Charge Nurse came in and visited like we were old friends, you can imagine the RN then wanted to be in the "loop." Once the "Middle Man" (onc) was out, I was able to establish a relationship and a GOOD one, with the Surgery team. I am not sure why things have to continually be so stupid but intend to write a letter of complaint to Childrens and name both MY Onc and the other Hag Onc as well. If we have any other bowel problems, we will go in through Emergency, wait the ten hours, whatever and bypass Oncology period. That situation really soured me to their "Services" and my attitude really did not need much help in that department.
Well, it is bedtime for me. Thanks so much to those who take the time to pray, write and check in on us. Your support means the world to us. I made time to file our taxes yesterday and while going though all our our records, I went back to last year, month by month. It was sad in a lot of ways as you might imagine. Thinking of last January, things were good, we just closed to orders so I could finish them before Anna's birth. February, I wondered if I would ever have Anna and at the same time, wondered if I would ever finish orders, LOL. Anna was finally born in the most magical birth I have ever had. My dream birth. Life was good. That was the best thing we did last year. March, Anna got RSV and that was our first experience with hospitals and boy was it a bad one. April, Samuel's leukemia. Pull the rug out, kick me, burn my house down....just awful. May, even WORSE! June, the pit of hell, we wondered if we would ever get out. July, new hope, new hospital, we finally went home. August, September, October, recovery, new life, new hope, lots of fears. November and December, joy, sorrow, hope, and pain. You name it we lived it. But while I felt sad, I was reminded of the MANY people who cared, who literally came out of the woodwork to help in any way they could. It was overwhelming then, and moreso now looking back. Thank you to everyone for all you did for us. We will never forget it, ever. You are amazing. We love you.
2/15/05
The night went great, they have no reason to keep us here, just waiting on our walking papers. We are going HOME! Much love.
2/14/05pm
Samuel's TPN is stopped, his port is deaccessed and I am resisting the urge to pack up and go home. The day went well and Samuel just did better and better as it went along. Shortly after I posted the update today, the Attending Surgeon who did Samuel;s surgery came to visit. I haven't seen him since the surgery day. He came to visit with me once but we were about and about in the stroller so I missed him. He was happy with the progress over the weekend and especially today and when I asked when we could get off TPN since it was obvious Samuel was going to fine with his feeds, he said today. Samuel woke up in the middle of the conversation and said he was hungry and wanted to eat, which was PERFECT timing, LOL. The Surgeon told me to feel Samuel whatever he wanted, "if he wants to eat, don't stop him..." I asked about going home and he said a good day would be tomorrow assuming things go okay today. As I prepare for bed, things are great. Samuel is sleeping and getting his nighttime drip feeding. I talked to the Surgeon about Samuel's stoma since it is now almost 1.5 times the size it used to be and he told me that the intestines were THAT swollen all over so the stoma is bigger and should shrink down within the next few weeks. I assume then that his gut will start working better as the swelling goes down as well. No wonder he has had so much trouble. The Surgeon remarked about the amount of time it has taken to get everything going again and said that he pulled out and examined Samuel's ENTIRE small intestine which would have made things happen slower and added the assault of the G-Tube. He was hoping things would have happened sooner, but is happy with the outcome today. Samuel's tummy is not rejecting food anymore and the only complaining he has done is when poop leaves the stoma. This should subside with time. No more morphine since midnight so things are looking great.
The Surgeon apparently forgot to visit with his team about the plans he and I made so they were thinking he was going to be hooked up to TPN tonight. I said a big no to that idea. Not only does he not need that but his port is deaccessed. I see no reason to access it for an overnight infusion of TP-Crap as I now call it. We had an RN team tonight who did not know us so they called and the Residents could not get a hold of the Attending since he is busy tonight so while they apparently took it upon themselves to want him on TPN, it did not happen.
Our RN came in to discuss it with me tonight while I was making Samuel's cultured Oat Milk. I guese they are not used to someone actually bringing in their blender and supplies and figured I was pretty serious. She asked me all about Samuel's diapers, his food, and the mostly all natural approach we are taking to his health and was really interested. I am sure I am the topic of conversation at the desk tonight, LOL. I am sure they think I am a nutcase but you just have to see Samuel to KNOW the difference.
As promised, he was deaccessed at 4pm today and we hit the halls, the front walkways and took the tour of the place once again. He enjoyed getting out of here. He met the espresso ladies and I ate dinner, he watched. He got out to play in a play area and is still kind of limping, looks a little drunk. Amazing how fast you lose your mobility when you are stuck in a bed. We were out for over 2.5 hours and then he had his shower which he did not appreciate. I hooked him up to food, gave him a little ibuprofen and he passed out. We did not see the fire truck tonight but did see lots of buses.
All we have to do is make it through the night without puking and we are good to go tomorrow. Did I mention I can't wait? I know Mark can't wait, he is tired of being A.D.'s Mommy, LOL.2/14/05pm
Samuel's TPN is stopped, his port is deaccessed and I am resisting the urge to pack up and go home. The day went well and Samuel just did better and better as it went along. Shortly after I posted the update today, the Attending Surgeon who did Samuel;s surgery came to visit. I haven't seen him since the surgery day. He came to visit with me once but we were about and about in the stroller so I missed him. He was happy with the progress over the weekend and especially today and when I asked when we could get off TPN since it was obvious Samuel was going to fine with his feeds, he said today. Samuel woke up in the middle of the conversation and said he was hungry and wanted to eat, which was PERFECT timing, LOL. The Surgeon told me to feel Samuel whatever he wanted, "if he wants to eat, don't stop him..." I asked about going home and he said a good day would be tomorrow assuming things go okay today. As I prepare for bed, things are great. Samuel is sleeping and getting his nighttime drip feeding. I talked to the Surgeon about Samuel's stoma since it is now almost 1.5 times the size it used to be and he told me that the intestines were THAT swollen all over so the stoma is bigger and should shrink down within the next few weeks. I assume then that his gut will start working better as the swelling goes down as well. No wonder he has had so much trouble. The Surgeon remarked about the amount of time it has taken to get everything going again and said that he pulled out and examined Samuel's ENTIRE small intestine which would have made things happen slower and added the assault of the G-Tube. He was hoping things would have happened sooner, but is happy with the outcome today. Samuel's tummy is not rejecting food anymore and the only complaining he has done is when poop leaves the stoma. This should subside with time. No more morphine since midnight so things are looking great.
The Surgeon apparently forgot to visit with his team about the plans he and I made so they were thinking he was going to be hooked up to TPN tonight. I said a big no to that idea. Not only does he not need that but his port is deaccessed. I see no reason to access it for an overnight infusion of TP-Crap as I now call it. We had an RN team tonight who did not know us so they called and the Residents could not get a hold of the Attending since he is busy tonight so while they apparently took it upon themselves to want him on TPN, it did not happen.
Our RN came in to discuss it with me tonight while I was making Samuel's cultured Oat Milk. I guese they are not used to someone actually bringing in their blender and supplies and figured I was pretty serious. She asked me all about Samuel's diapers, his food, and the mostly all natural approach we are taking to his health and was really interested. I am sure I am the topic of conversation at the desk tonight, LOL. I am sure they think I am a nutcase but you just have to see Samuel to KNOW the difference.
As promised, he was deaccessed at 4pm today and we hit the halls, the front walkways and took the tour of the place once again. He enjoyed getting out of here. He met the espresso ladies and I ate dinner, he watched. He got out to play in a play area and is still kind of limping, looks a little drunk. Amazing how fast you lose your mobility when you are stuck in a bed. We were out for over 2.5 hours and then he had his shower which he did not appreciate. I hooked him up to food, gave him a little ibuprofen and he passed out. We did not see the fire truck tonight but did see lots of buses.
All we have to do is make it through the night without puking and we are good to go tomorrow. Did I mention I can't wait? I know Mark can't wait, he is tired of being A.D.'s Mommy, LOL.2/14/05pm
Samuel's TPN is stopped, his port is deaccessed and I am resisting the urge to pack up and go home. The day went well and Samuel just did better and better as it went along. Shortly after I posted the update today, the Attending Surgeon who did Samuel;s surgery came to visit. I haven't seen him since the surgery day. He came to visit with me once but we were about and about in the stroller so I missed him. He was happy with the progress over the weekend and especially today and when I asked when we could get off TPN since it was obvious Samuel was going to fine with his feeds, he said today. Samuel woke up in the middle of the conversation and said he was hungry and wanted to eat, which was PERFECT timing, LOL. The Surgeon told me to feel Samuel whatever he wanted, "if he wants to eat, don't stop him..." I asked about going home and he said a good day would be tomorrow assuming things go okay today. As I prepare for bed, things are great. Samuel is sleeping and getting his nighttime drip feeding. I talked to the Surgeon about Samuel's stoma since it is now almost 1.5 times the size it used to be and he told me that the intestines were THAT swollen all over so the stoma is bigger and should shrink down within the next few weeks. I assume then that his gut will start working better as the swelling goes down as well. No wonder he has had so much trouble. The Surgeon remarked about the amount of time it has taken to get everything going again and said that he pulled out and examined Samuel's ENTIRE small intestine which would have made things happen slower and added the assault of the G-Tube. He was hoping things would have happened sooner, but is happy with the outcome today. Samuel's tummy is not rejecting food anymore and the only complaining he has done is when poop leaves the stoma. This should subside with time. No more morphine since midnight so things are looking great.
The Surgeon apparently forgot to visit with his team about the plans he and I made so they were thinking he was going to be hooked up to TPN tonight. I said a big no to that idea. Not only does he not need that but his port is deaccessed. I see no reason to access it for an overnight infusion of TP-Crap as I now call it. We had an RN team tonight who did not know us so they called and the Residents could not get a hold of the Attending since he is busy tonight so while they apparently took it upon themselves to want him on TPN, it did not happen.
Our RN came in to discuss it with me tonight while I was making Samuel's cultured Oat Milk. I guese they are not used to someone actually bringing in their blender and supplies and figured I was pretty serious. She asked me all about Samuel's diapers, his food, and the mostly all natural approach we are taking to his health and was really interested. I am sure I am the topic of conversation at the desk tonight, LOL. I am sure they think I am a nutcase but you just have to see Samuel to KNOW the difference.
As promised, he was deaccessed at 4pm today and we hit the halls, the front walkways and took the tour of the place once again. He enjoyed getting out of here. He met the espresso ladies and I ate dinner, he watched. He got out to play in a play area and is still kind of limping, looks a little drunk. Amazing how fast you lose your mobility when you are stuck in a bed. We were out for over 2.5 hours and then he had his shower which he did not appreciate. I hooked him up to food, gave him a little ibuprofen and he passed out. We did not see the fire truck tonight but did see lots of buses.
All we have to do is make it through the night without puking and we are good to go tomorrow. Did I mention I can't wait? I know Mark can't wait, he is tired of being A.D.'s Mommy, LOL.
2/14/05
Happy Valentines Day....to those who don't boycott it anyway. I get to spend this day with one of my favorite sweethearts, the sweetest man in the world, my QT. As I type this, Samuel is sleeping peacefully while getting fed through his new G-Tube for the first time. He ate soup for breakfast today and is now getting my millk with some peppermint tea added. He is doing well so far today. His last morphine was at midnight or so and I think he is done with it. I might see the light at the end of the tunnel....
Yesterday, Mark and the kids came in. I have really missed them, especially little A.D. who looks so big. Mark has done really well being both Mom and Dad to them. Everyone is going to be so happy to be reunited. A.D. came and was able to sit by Samuel in bed and play for the first time. We usually don't let them get that close because she will pull out his NG tube. Not a problem anymore. They hugged and kissed and played happily. The family coming in was just what everyone needed. They stayed for a few hours until Samuel's blood came down and then they left. I hope that the next time they come in it will be to pick us up. Today is two weeks here. Mark and I were talking about last summer and how did we ever manage to do this for three months? I can't wait to be back in my home, in my own bed, and take a bath! Samuel still has to wait another week before he can bathe but he will get in the shower today.
Thanks to the volunteer donor who gave blood to help someone who needed it. Samuel's HCT was 23 yesterday and 43 today. He is no longer anemic. I literally watched the paleness leave his face and pink reappear. His energy level today has been great and he woke up and sat up immediately and started playing this morning. Big difference. His labs looked great for the first time today. I know it was the blood because all his chemistry is now in balance. He has 7800 WBC's and over 600k PLT. I am excited to get home and do something because he is not neutropenic now, we could actually go somewhere. We most likely won't since I will need to work pretty much the minute I walk in the door. This extended stay was not in the plan, I thought I would have been out of here WAY before now.
The morning the surgeons came in and asked how the night went. I said it was better and I was hoping for a better day. The Senior Fellow told me that Samuel will have no food restrictions today but to do whatever I wanted to do since "I" know him best. How awesome is that? I think they are finally getting to know me. It is nice to finally get the credit I feel I deserve for managing ALL the problems we have in the last few months. I guess they figured I am not going to overload him at this point. So, I was really happy this morning being handed the reins in my OWN child's care. Sure makes a huge difference when people treat you like an intelligent person. I guess I can refrain from putting a sign on the door that says, "treat me like I have a brain and I will treat you like YOU do."
I told them I was just going to let Samuel tell us how he wants to be fed. I listened to Samuel last night and he wanted to eat soup. Of course, no one knows that he ate a little soup for dinner and did pretty well. His tummy did not reject it, but it still hurt as it worked it's way through. But I knew that was a good sign. If he wants to eat, I want to feed him. So, so far so good, he is sleeping and being fed, this is real progress. If all continues to go well, I am going to ask the TPN to be tapered off. At the place we are now, it will take two days to get off the TPN so if all goes wel, we could be thinking of leaving by Wed at the earliest. That would be so so nice!
Our plan for the rest of the day is to have his port deaccessed and get him in the shower. Then we are off TPN for about four hours so we may hit the playroom, run around the hospital, and introduce him to the espresso ladies who ask about him daily...take him out to dinner at this lovely...establishment, LOL. Hope there is a fire code called so we can see another fire truck. You know, enjoy the little things, find the fun where you can get it.
I pulled out Samuel's NG suction yesterday and told him NO MORE TUBE!! He was a happy man about that. I told the RN in training with Esther that I was going to pull the NG since the docs okayed it and she was like....."okay............" and then told Esther. Esther laughed and said, "it is okay, it's JEN." So I guess not everyone knows us. We had another student RN the other day whom I asked what part of her training she liked the best and she said she liked Pediatrics. Her reasoning is that adults tend to want to control everything while children just put their lives in her hands. Remember that if and when your child is ever in the hospital. I told her, that the child may be in their hands if the parent is not around, or if the parent does not advocate for the child, but that that was not the case when you walk in our door. I am one of those pain in the butt parents, LOL.
Our RN's today have been really great staying out of here for the most part because Samuel is sleeping. Some of them bug you even when they sleep wanting to do vitals, and then waking them up. So it is a nice thing. Of course, we are not all that problematic at this point, just waiting for his gut to work right.
Thanks so much to whomever sent Samuel the little quacking duck and the magnet farm book and wood puzzle. Mark brought these in yesterday and they were a big hit. Of course, him being a man, he did not know who they were from. Send me a note and LMK who you are so I can say thanks to you. These were a lifesaver. It is BORING here even for Samuel.
Thanks for your prayers and kindness to us at this time. Keep praying that things go smoothly so we can get home for some much needed normalcy. Much love to you all today..
2/13/05
I had our night RN just bring morphine in every two to three hours without asking me so that we could sleep last night. It worked and Samuel was a lot more comfy. We woke up to a bright sunny day. Yesterday it rained all day. I wanted to get out and about today but it doesn't look like that will happen. Samuel's tummy continues to not work. Today the vent bag attached to his NG is filled with my milk so his tummy is still rejecting everything. His pain level is less today and he did express interest in crackers but ate a few small bites and his tummy started in again.
We have Esther again today. I was thinking I like being over here so much because of a few reasons. First, all these people know us from last summer. That helps my wants and needs regarding Samuel's care get met without so many issues, fights or long explanations. Second, they care. Plain and simple. It is a refreshing change from the Onc side.
Anyway, the Surgery Team came through today to see how the night went and I have to say I am really liking the Junior Fellow. She has been getting to know us since our first admission in mid January. Anyway, she okayed all the extra tests to be done yesterday that I requested with NO issues. No fight, no BS. So while we went to bed with questions about what is still causing Samuel pain and making his tummy not want to work, we knew what it wasn't. I was very happy about that. The question of his hematocrit yesterday and a transfusion was answered by her today. I asked yesterday and got no answer so I took that as a no. But she came in today and asked me what "I" wanted to do. How nice is that? I told her I was definitely all in favor of a transfusion as I don't think it will improve on it's own. Samuel has too much to overcome and it may be holding us back. He has been anemic for over two months now. She was in favor of a transfusion as well. So I am happy about that this morning as well. I hope this is the boost Samuel needs at this point. He will get blood sometime this afternoon and they will keep a closer eye on his counts now too. The level of trust between this doc and I is a really nice thing. Something that has been lacking for quite some time with any doc in the last few months. We talked about his Xray and she said it was TOTALLY normal. She suggested making him NPO today (nothing by mouth) and I told her he was NPO at my request yesterday when I saw my milk come up looking the same after several hours. She looked impressed with that call on my part. So no medicines, no food. I guess I am of the opinion today to let Samuel let us know when he can eat. He has always done this in the past and we infrequently listen and watch his signs. So we are all hoping that tomorrow after another day of gut rest and a little blood boost that his body will start working again. That is everyone's hope anyway. This doc left today apologizing that he was not yet better. It is easier for me to trust people who act human and listen and respond to my input. I am thankful for that this morning and praying that we see a change in the next 24 hours. I think we ALL want Samuel to stop hurting.
In all the brainstorming being done here to figure out why Samuel's tummy refuses to work, we have come to the conclusion that between the assault of the G-tube and all the blockages in his gut that he has had for SO LONG, and the pancreatitis, his tummy has just gone on strike for awhile. Hopefully it will come around in the next day or so. Samuel wants to eat.
Mark and the kids are coming in to bring me some food, and some stuff to make Samuel's food assuming he will be able to tolerate food soon. A little company will be nice since it looks like we will be couped up all day.
As I finish this, I am counting my blessings and thanking God for keeping this situation in His control. Samuel keeps saying "I am sad, I am really really sad, I am sick...." But I know that God is helping him even now. God is IN him, God is healing him. I hope to be home soon. Much love to you all.
2/12/05pm
Samuel's pancreatic enzymes are still up but trending down so that is good news. After getting the full lab sheet, his liver is great, no kidney issues and his blood counts don't reflect any infection or other issue. Everyone is still a bit puzzled as to what the problem is. The Xray did not show anything, no great surprise, they never showed anything even when he had a MAJOR problem.
So Esther and I talked about everything and think possibly his G-Tube may be really sore. And due to this and the revision, and the pancreatitis, his tummy is not working yet. I put my milk down the tube and it all came back up the tube looking just like breastmilk. Unfortunately that was hours after I put it down, it should have been out of his tummy by then. So I stopped all oral meds today and am just allowing IV morphine to give his tummy a break.
I have a really nice schedule here which for the most part works out great. If I get up at 6am or so, I can shower and get coffee before doctors round. I can lunch during Samuel's nap in the afternoon. And about 5pm, I have them unhook him from the IV pole so I can drive him around in the stroller. It is a nice break from the room which is starting to feel like jail. Samuel usually feels better for getting out of here and wandering the halls. Last night he did not enjoy it at all. Tonight, he perked up quite a bit and even got out and walked around some. This is the first time he has done this since the surgery so it was fun to see him play a little. He is limping though. I am glad I have tried to get him out every night because it is hard to tell how he is doing in the room, it always seems he is miserable in here. But once he gets out and about , it is easy to compare one day to the next. He is a lot better tonight and I pray that we will sleep tonight and see light at the end of the tunnel tomorrow.
His hematocrit is low today. It was 23. So he is very anemic. They don't transfuse here until it hits 20 which sucks because he could really use the boost. He is getting no iron from TPN and is unable to eat so it will just keep falling. If we stay much longer, he will need blood. It is annoying because he has to get worse before he can get better. I guess I will be having a conversation with the Onc tomorrow. Haven't seen him in two days now...must be avoiding me.
Please pray that Samuel's tummy start working again. I know it is not working because I put my milk down his tube at around noon and during our walk at 5pm, it came back up into the vent bag looking identical to the way it went in. Pray the the pancreatitis resolve. We are doing nothing else down the tube now, no meds, food, nothing until the pain improves. If he cannot even digest breastmilk, nothing will work at this point.
The Resident decided that if we like to take a nightly jaunt without our IV pole, that he will order TPN for Samuel to run 22 hours rather than 24 so he gets it all.....oh yeah! It is nice that they want to accomodate my walks at night but why do I get the feeling they think we are going to be staying here for a long time. Obviously we will be here a few more days and the docs want Samuel to be tolerating his normal feed schedule before we can leave. We will be able to use the G-tube starting Tuesday and I hope everything will be normal then and we can leave shortly thereafter. I am just so tired of Samuel hurting. He was supposed to be better by now.
Well, I am off to scald myself in the shower and try to sleep. Missed my am shower due to lack of sleep. Much love to you tonight.
2/12/05
Well, our night was awful. Samuel was up in pain most of the night needing a lot of morphine which did not even seem to help much or for any duration.
The labs for pancreatitis are back today and are on the way down so at least that issue is res0olving. I just spoke with the surgery team and they have agreed to run a Liver test and the blood counts to see if there is something showing up there. I talked with Kristina who mentioned a kidney infection since he had a catheter a few days back AND it took them five tries to get one in. So they are doing a urine test as well. They have also ordered an abdominal xray this morning as well so I am pleased that they are listening and covering all the bases. If they did not, I was going to sick Oncology on them, LOL. So it seems we will have a busy day of tests. Samuel is getting more morphine now which is not helping much either. I was really hoping he would be better today but Mommy Radar says something is WRONG. We have another favorite RN today, Esther, who was one of Samuel's primary RN;s from last summer so she knows that he is totally unpredictable and that I am not just an overprotective worrisome mom at this point. Please pray that whatever the issue is that is causing this much pain can be found immediately and resolved today so we can be thinking about leaving soon. Samuel needs relief. I thought by now we would have it but he is MISERABLE...ugh! I am so tired of this. WIll update more as I know it. We thank you for continuing to check in and pray for Samuel today. Much love.
Update 2/11/05pm
We got Samuel totally off the morphine drip much to everyone's amazement today. He has still needed a bolus of morphine here and there but had a good morning. I was able to feed him about ten ounces of my milk today, starting off slow so as not to cause another issue. But by the afternoon, he has been more agitated, probably from the lack of morphine. His gut had been slow and now he seems to have diarrhea coming out like crazy. His tummy is really bothering him again. Since we were off the drip, I had him unhooked from the IV pole to take him around the hospital tonight. That usually helps but did not distract him enough. His abdomen is a bit distended still which is concerning but he seems to be peeing a lot and hopefully this is resolving.
I feel a little concerned tonight about him seeming in more pain and worse than we started out earlier. He has had small morphine boluses today as well as ibuprofen around the clock. In thinking back to the original ileostomy, I recall the third day post op being the worst. I think I worried then a lot too. At any rate, I asked them to do full panel labs tomorrow to be sure we don't have pancreatitis creeping back up, or a TPN induced hepatitis which could be making his tummy distended as the liver swells. I really want him to wake up tomorrow a happy man, not a sad boy who is wimpering right now in pain.
Tonight we were able to spend some time out of our room, about two hours free. I usually drive him all over in the stroller. They had a fire alarm go off which stopped all the elevators and it worked out great as we were on the ground floor so we raced out to the street to watch the fire engine come in. Samuel liked that and it felt like we were AWOL so I enjoyed it as well, LOL. I wished I could call Mark and tell him to come and get us. It was dark by then so we did not enjoy much daylight. We hung out on the first floor until the fire drill was cleared and then headed outside again to watch the fire truck leave. While out and about tonight, I ended up getting on the elevator with the lady Onc who was In Patient Attending the last time we were here, you know, the one I hate? She was sure a chatty Cathy, very sweet. Hmm, go figure. I did not see our Onc today.
Please pray for Samuel, that our day tomorrow is much improved so I can begin the task of getting out of here. Honestly if I wanted to be a single mother, I would not have married my best friend. I miss my family! I love the one on one time with Samuel, but miss what normalcy we have while at home.
2/11/05
Samuel's fever stopped returning yesterday but he had quite a lot of pain to deal with. We were going to start weaning the morphine but I asked them to wait until today. Mark and the kids came in and we were able to get Samuel into the stroller and out for a walk. Picking him up caused an incredible amount of pain and so did sitting up. They stayed long enough to bring me lunch before heading out.
Our Onc came in around 3pm and LMK that apparently they save blood in the lab for a week so he had Samuel's blood tested for pancreatitis on 2/3 and he had it then as well. Not a big surprise to Mark and I because since finding out about it, we feel we are on the tail end of it. Wouldn't you think that if you were giving a poison that can cause this, you would check for it regularly??? I am not sure why they are not a lot more proactive with Samuel's case. Hopefully they will be now.
Yesterday was boring. They decided to not allow Samuel clears after saying it was okay the day before. He was fine with it though. Last night was pretty uneventful until 3am when he woke up in great distress. He also had an "air bag" which is what they are looking for to be sure his intestines are working again. We ended up calling the Resident on call to come and check to be sure he was okay and everyone just figured it was cramps or gas pain. We managed to get him comfortable and back to sleep. This morning the Surgeons came in, saw the air bag and okayed his regular diet. Things are going well with that so far. We are weaning the morphine fast at my request because I want to get him unhooked from the IV pole so we can wander this afternoon. I told the Onc that the Surgeons seem to think I want to camp out here FOREVER and don't know that I have already been here forever. He was sure I would let them know my wishes... LOL. The labs did not include looking at the pancreatic enzymes and when I asked the Surgeons, they did not feel they needed to be looked at every day. I hope they are right. It will be really obvious as I feed him today. What is coming out of his "air bag" looks a lot better than what has been coming out over the last several months. Makes me wonder how long his intestines had been kinked.
My plan is to get him off morphine, on to regular feeds assuming the pancreatitis does not affect digestion too much and off the monitors so we can be free. As long as he is getting calories elsewhere, the TPN going off for a few hours is not a big deal. If his diet is good, then they can taper the TPN starting even tomorrow. There is no point in asking and pestering them to release us when we are attached to all this extra crap. So one thing at a time...the sad thing is, I know the drill all too well. I guess that is a good thing. Anyone else would be looking at another week here. I think I see light at the end of the tunnel. Samuel's blood cultures came back negative for bacteria which is obvious given his temp has remained normal the last day or so.
The weather is still nice here and as I walked the kids out to the car, I really wanted to be loading up and leaving. I hope we can get Samuel out in the sun even if just for a little while this afternoon. The springlike weather really brings me hope today especially in thinking of how much spring we missed last year. I am looking forward to Samuel having a birthday this year. One we actually celebrate at home, and one of his presents not being chemo.
I had a long talk with the ND yesterday about what has happened and going off treatment. His advice was to get Samuel whatever chemo he can tolerate and at the point when he goes off treatment to be hooked up, and then later down the road, he had some other things we can do. He also reminded me that my Onc is one of the good ones and while he may seem to be a bit hardened at times, or as I say "all about his poison," he cares. Of course he told me to keep "working" them and I told him that telling the Onc that we were done with chemo REALLY got their attention. As Tracy in VA told me, if they did not think I had a valid point, they would have "done" something about me by now. I keep finding this amusing as I wonder how many more things I can say or do before they want to throw us out.
As far as the Surgeons are concerned, Samuel is improving ahead of schedule so please pray today that there are no set backs and Samuel does what he does best, keeps amazing them with his resilliance. I really really want to be packing up to go home in the next few days.
Thanks for all the notes and prayers today. Keep storming heaven for Samuel. He wants to go home. So do I. Much love.
2/10/05
Well, the pancreatitis is confirmed by today's labs and based on the visit from the Surgery team this morning, we could be here awhile. They keep changing their minds about how much clear liquid to allow Samuel because they are waiting for his "air bag" to be full of air first. The surgeon told me based on the amount of swelling in the gut, he was in no rush to get him eating again. He would not be surprised if it was a week before his intestines were normal. The pancreatitis only makes things worse for now because he won't be secreting the usual enzymes to break down foods correctly. This would explain why he was able to tolerate breastmilk, and his cultured Oat Milk as they are predigested. The chicken stock is not and that basically came back up a week ago or so and was never tolerated. His air bag does have poop in it today that smells like I would expect breast milk poop to smell. So the foul horrible crap he was making must be gone. They sent him back from surgery with the NG suction in place but removed the NG feeding tube which is annoying because it is a lot harder to push things down the suction tube and we cannot use the G-tube for several more days. Based on today's visit and labs, it may not even be an issue. Listening to them today, we could still be here another week. The enzyme values on the lab sheet did go down a bit today so are headed in the right direction at lesat. I think they are going to proceed with great caution with Samuel now, which is good for him, but sucks for the time we may be staying here.
Samuel had a good night and we both were able to sleep for the most part which was nice for once. He is going to start weaning off his morphine drip today which should help his gut start working better. We are in a watch and wait pattern now.
Mark and the kids are coming in to get the milk I have stored for Anna and bring me some more clothes, etc. It looks so nice outside today and I just want to be out of here. I keep dreaming of that vacation I have not yet been able to take. It would be so nice to leave for awhile.
I put a call into the ND this morning to let him know we are here and talk about going off treatment for awhile. Just exploring the options and seeing what he comes up with. I know there are a LOT of options out there that are NOT chemo, just picking his brain at this point and trying to determine if he will still serve our needs or if I need to find someone else at this point.
I have gotten some wonderful notes from people who have not written before and thought it would be fun to know how you all found Samuel story expecially if you were not a former customer/friend. It would be fun if you would sign the guestbook and LMK how you found us. These entries mean a lot to us and I have been reading them to Samuel since I have the laptop right next to his bed. He likes looking at himself on the computer, LOL!
As alway, thank you for your prayers and love. Our love to you!
2/9/05
We did not get to bed until after 1:30am last night. I had them double strength of the morphine drip last night so he finally got mostly comfortable. Then they decided to insert a catheter into his bladder since he had not peed in over 12 hours. He had stored over 12 oz of urine. Unfortunately that took four attempts to get the catheter in and kept us up very late. I was ready to drop by then. And we did not get much sleep due to his pain, nightly checks, etc. We were up by 7am unfortunately.
We had Julie again today as our RN which always makes the day better. It makes a huge difference having an RN who knows you....I told her I would try to follow directions and not get her fired.
Samuel ran a fever all night which spiked to above 101 today. Cultures of the blood were done to check for infection. It is highly doubtful, but to be on the safe side, I asked for them to be done. Mark told me Anna had him up all night with fever last night too....hmm, they weren't together yesterday at least but you never know.
His pancreatic enzymes are elevated today showing signs of pancreatitis. One enzyme is up to ten times the normal limit and the other is doubled. The surgeons are not too concerned yet because they think that the surgery could have caused these values to go up. They will retest tomorrow and see if they stay high or go down and then decide appropriate measures. This will also determine how long we stay here so please pray they go down quickly. I still cannot even believe it. God continues to protect Samuel.
The GOOD news is that our Onc saw the enzymes today and stated that Samuel will get NO MORE L-Asp EVER again. I tried to contain my excitement. I hated those shots. He was really glad that the surgeons caught this because if Samuel had gotten another L-Asp shot, he would most likely die from pancreatitis. I think the Onc was floored by the news though, and said "No wonder he has had so many problems...." And then, "if we keep marking off medicines, there won't be many left to give...." Hmm, is there a message here? That leaves our Interim Maintenance with Methotrexate only. The Onc is officially off our case now as Surgery has taken over but said he came because "He cares." I got the feeling that maybe he gets it. Especially after the news of how the surgery went, what was found, etc. I hope that when we return to treatment, I will be taken much more seriously. I said something to him about wanting to fix all this and go home for awhile and he stated reassuringly, "well, you have a few weeks..."
Samuel is doing much better today, thankfully. Last night was pretty miserable. He was okayed for clear fluids which includes breastmilk so I have fed him a little tonight. He drank water all last night against orders but I was NOT going to take it away from him. He took a great nap today and rested well. I am hoping to have a less eventful night tonight. He still has a fever though, which I hope will go away tomorrow. I sat him up in bed a few times but he is pretty sore. When a nurse or a doctor comes in, he says "I'm NOT playing..." Or, "I am TRYING to go to sleep..." Or, "It's gonna hurt," and sometimes, "It's not gonna hurt.." When it is just he and I, he says, "I'm sad...I'm sick." I tell him that he may be sick but he is going to get better. He is an amazing child and it is such a blessing to be his mother. I have to say, I feel very very lucky to be the center of his world, if only for right now.
Tomorrow will be ten days here, ugh! I know my house will look strange when I see it again, which I hope is soon. Thanks to Shelby P. for coming to meet us and bringing Samuel the ducky pillow. That pillow is perfect for sleeping with. Thank you!
Toni, my MW came in to see us tonight which is always a pleasure. She thought Samuel looked great. She thought he looked even better than he did at the auction last September and that says a lot since he is only one day post op. She is going to bring Mark and the kids dinner tomorrow night which should be nice for them.
I don't know when Mark and the kids are planning to come back in to see us. Probably make firmer plans when we see labs for tomorrow. And it looks like the surgeon who is watching over Samuel is very cautious when it comes to letting you go home....that part sucks. But I think he was a bit startled by what he found in Samuel's abdonen.
Well, I need to get Samuel to sleep, he thinks he is staying up all night, it seems. Much love and thanks to you for checking in, praying for Samuel, sending me a note which helps kill the time here and for your love.
2/8/05
I am starting to dread Post Op Reports from the Surgeon because they are never what you expect. Or as I told Monika, there is ALWAYS something else.
Samuel was in surgery for 2.5 hours before I was paged back to the OR waiting area. They had only allowed 2 hours for the surgery. Once there, I had to wait another 45 minutes to talk to the surgeon. I was really starting to wonder what was up.
He came in and said that the surgery went well and Samuel did great. BUT, there were a few unexpected things found. First they did see a narrowing at the stoma site and a small kink right before it in the intestine. That was expected. There were adhesions and scar tissue all over the small intestine binding it up so they removed it allowing the intestine to be free again. Again, not a giant surprise.
What was a surprise was the surgeon told me had they not placed the G-tube, they would not have found the BIG kink in his intestine up high. Somehow the CT and the Barium study missed this. And topping it off, his pancreas is enlarged and hard showing signs of pancreatitis which is NOT good. Pancreatitis can be deadly. Pancreatitis can be caused by that L-Asp shot I loathe so I told the surgeon we need to find out for sure if he has pancreatitis. If that is the case, he can not get the L-Asp shot anymore. Interestingly enough, we were having the puky weekend that put us here a few weeks back the day after the L-Asp shot. So the Pancreatitis could have started then and would still show up now since he has been obviously obstructed all this time. All of these things would account for the misery he has been in and why the efforts of early last week did nothing to give him relief. When I think of all the suffering he has done I feel sick. So now a new problem to sort out. I think the Surgeon was shocked at his findings and relieved that they did the G-tube so they could find it all.
Samuel is miserable tonight. I mean miserable. I am working hard to get his pain managed at this point. I am so tired of seeing him this way. We are now waiting for the IV team to come try to see if his port will work. Last night it stopped drawing out so no labs were obtained today. Nothing can be done until it is fixed. I would tell them to go away tonight if the pancreatitis was not an issue. But we need to get labs asap.
Mark brought the kids in today because I needed Anna to come nurse. My milk is going to be non-existant if she doesn't nurse regularly. The amount I can pump has been less and less by the day so that is frustrating and a concern I would rather not have.
Looks like leaving Friday may be optimistic at this point given the new developments. We shall see.
Our Oncology RN was under the impression that we were coming back from the surgery to her care. I told her we were going to surgery and if we did not, I was surely going to start throwing things and they would have to call a "Code Champ." That is when security comes. She laughed.....haha. She does not know me. Anyway, when I came back to tell Mark the Post Op news, Julie, our favorite RN was at the door telling me our new room number and that she was going to be with us for the next two days. I saw her and said, "finally, someone I like!" So all is good on the RN front tonight anyway. We are back in one of our old rooms which is huge so at least if Anna has to come stay it won't be crowded. Interestingly enough, Oncology did not come to see us today, LOL! I am sure it was hard to relinquish the control....
Thanks for your love and prayers tonight. Please keep Samuel in prayer that his pain might be managed and that there are no other complications. Pancreatitis could keep us here a WHOLE LOT longer than I want to be. Much love.
Update 2/7/05
Sorry for the delay in this update....I wanted to talk to all the people who have helped us get to where we are now personally before posting this.
Samuel's surgery is scheduled for 10am PST tomorrow (Tuesday) for those who like to know the time so they can be praying. We appreciate all your prayers. I have requested an anesthesiologist and that request will be honored assuming she is working. Samuel's stoma will be revised and a G-tube placed. So while I don't get my entire wish of cleaning up his body he will get his face back and that will be wonderful for us all.
Our meeting went well yesterday. Mark and I were pretty much on the same page after I talked to Monika and then shared that conversation with Mark. I got an e-mail from Tracy in VA pretty much confirming our choice to not limit our options at this time. We really really wanted to hook up his gut but we know that we would be setting Samuel up for further complications with chemo down the road. The decision as to what to do seemed pretty easy after talking to Monika. We know that you just cannot decide that kind of thing under diress, in a bad situation or in the mental condition I have been in. So we have not "thrown in the towel" yet, but the jury is still out as to what chemo, how much, etc.
The last time I asked our Onc (Sept 04) as to what he felt our prognosis was, his reply was "I feel as good as I can feel.." No one knew what that meant then, and I still don't know to this day. But telling him to go home and think about what to do chemo wise as if Samuel was his child was a good thing because he acutally gave us an understandable answer.
In his words....What makes Samuel stand out is that at diagnosis, he had a very high WBC which was put in remission very quickly. He has went through some horrible life threatening problems and has come out in better shape than anyone could have dreamed, at least medical people. The Onc never thought that Samuel would recover from the shunt/hydrocephalus issues and be "normal." In the six months of trying to manage and fix all the complications of chemo, Samuel received very little chemo and he has not relapsed. Very favorable considering he has been referred to as a ticking time bomb. Our Onc was worried that when we came here in July of last year, that Samuel had way too many problems to overcome and he really worried about relapse. He was concerned he might relapse in the middle of trying to fix all the other problems and that would have been the final blow. But he never did. He worried about relapse in the CNS because it was six months between the first spinal tap and the second, yet no relapse there. When he started Consolidation, chemo which usually knocks kids on their butts did not even phase him, he did really well. And IF the stoma problems have been mechanical and his body has been trying to close up the hole, they may not be totally related to chemo. That means he did really well with chemo if you isolate the stoma as a seperate issue. In the Onc's mind now, given the last months progress, etc. He feels that Samuel has as good a chance as any other child to be cured, that is a 70% chance.
So that was kind of interesting news for a change. Makes this battle not seem so futile.
I brought up the trust issues, and the fact that we have had this mechanical issue for the last two months, this could have been solved then if he had gotten the appropriate person involved and stayed on their case until it was figured out. I pretty much laid it all on the line, no holes barred and asked how we will know that he will listen next time if an issue comes up and not dismiss us as overreactive parents. I told him that because I have a world wide business, I have people all over in the medical profession who I have consulted about this so when I have an idea, thought, request, it is not something that just flew out of my butt. I think he got the message and as I have said, I do like the Onc. Compared to the others on his staff, I believe him to the best. I reminded him that we came here to Childrens which a huge animosity toward chemo and Oncs and in one meeting with him, somehow trusted him enough. I asked him if he realizes how much we are trying to trust him. The conversation went really well and he said the thing he likes most about Mark and I is that he doesn't have to wonder what we mean, we don't beat around the bush. There was some comic relief here and there and Mark and I were already in agreement before the meeting but the Onc did not know that. Mark told the Onc that "he" has always liked him but that "I" am a hard sell. I told the Onc, that I have always liked him too, except for Friday....LOL. So the loose plan for now is finishing Interim Maintenance with just Methotrexate and L-Asp, NO Vincristine for now. Our Onc is not looking forward to even bringing it up, or so he says. And then come together again before Delayed Intensification. After that, Samuel will go off ALL chemo until his counts recover enough to get his intestines hooked up and for another month after that for them to heal. Then Long Term Maintenance. Okay, this is the Onc's plan anyway.
Where Mark and I are is getting this surgery done and behind us tomorrow. Going home, and then seeing how we feel. My feeling today is that it is a new day. The sun is out, it looks and feels like spring. I feel like I am in high school again, stuck in class on a glorious spring day. I just know I would skip class today if I was there. I would love to skip out today, and may get outside a bit later. Samuel is going to get into the tub soon and then we will be free from the IV pole for awhile to roam. I really hope that the new stoma convinces me that this last few months HAS been an anatomical issue. If that is the case, then I feel mostly confident that I can manage the chemo side effects as I have in the last few months and get him over this last hump. This may not be with ALL the poisons, but we will see. I feel today like perhaps the light has been turned on and we are free of the noose that has been snaring us.
Everyone I talked to today feels as if the Onc will be different from now on and we will get totally different care. My thoughts are that when your trust is broken, you do not just regain it overnight. So I will do as they do, wait and watch. I will do something they don't do, pray....this has to improve.
I am not looking forward to sending Samuel off to surgery tomorrow but today his stoma is closed down again and he is back in the miserable condition we arrived in. I just pray it works and is the relief we all need.
I asked the Onc how long after we are released he thinks we can have at home. He said a week. I said that was NOT enough time, we needed at least TWO weeks. He reluctantly agreed but asked me if I would promise to come back. I said, I wasn't promising anything right now. I know I will be a lot more clear as to what to do once we arrive home and have a few days to settle in again. We want to be sure the stoma works, let him recover, play, eat and enjoy for a change. After that, cautiously go with the flow. I did find it amusing that our Onc wanted me to promise to come back.
The surgery changing the TPN went over like a fart in church with Oncology so I think they got told off today. I am still amazed that Oncology does not have the foresight to back off. We did not even get back to that in our talk yesterday and I keep forgetting to mention that I was thrilled with my float nurse. But it is not like I won't be here for awhile yet so I can get it in tomorrow. We are switching to surgery's service, finally, tomorrow after the surgery. Thank GOD! Oh well, I am enjoying the drama play out between them.
My spirit feels relief and I just cannot get over the feeling like it is a new day, new revelation, a little hope that this can be better. Or maybe it is just the weather....This is why I want to be home.
Thank you to all for your notes and prayers. They work, they mean a lot, they are cherished. Thanks also to the people who have sacrificed for us final It is time for Samuel's bath. I am going to try to enjoy something today...Much love.
Update 2/6/05
Friday was just an incredibly awful day. I think I was emotional from the day before anyway but when you have nothing to do but sit in a small room all day and watch your baby suffer, you tend to focus on the big picture. I think I don't do this at home because there is always something to do to occupy your mind, and time. Here there is nothing. It has been increasingly frustrating to have people say one thing, do another and the culmination was Friday having the surgeons say to do one thing, the Oncologists say to do another and who do you think I listen to? Firstly, my gut. Secondly, the surgeons.
Apparently our Onc made a special trip to talk to me on Friday at the request of our "helpful" hag nurse who was sickeningly sweet to my face and whiny in the background. Our Onc asked about the previous night and I told him Samuel imporved enough to tolerate a feed. He appeared dumbfounded at first that I would feed him saying that wasn't a good idea and did I turn off his NG suction for that. Seemed like an idiotic question to me, of course I turned it off. So he had a fit about ME touching the equipment, ME feeding Samuel when the surgeons wanted him hooked up to NG suction all day. I halted him and said that first of all, the surgeons gave me a free rein to try ANYTHING to break up Samuel's ileus and if he could tolerate and keep a feed down to do it. Apparently they forgot to let the ONC nurse know and I guess she was a control freak and needed to do everything herself. Funny, she was fine about it when she would come into the room, never said a word, just sicked the Onc on me. So you might imagine the explosive conversation that turned into. I said, "See, here is the problem, THIS is why I don't want ONC as the primary service. YOU know NOTHING about how to help Samuel. I do, they do. We have sat here for the last three days and gotten nowhere because of YOU. If I can help him, I will. I did what I did because I was instructed to use MY discretion. The PM RN was fine with it because HE does not know what to do, it is not his forte. I will continue to make the proper choices regarding Samuel because if left up to you, things will continue to be screwed up at his expense." Just not a good situation. The Onc left telling me to ask THEM if the surgeons say somthing contrary to what ONC says. I refused. I told them I made the choices I did and they HELPED Samuel. I will continue to do so. Talk about a slap in the face, kick you when you are down. I still cannot believe it. I called Mark who told me to go eat, since I was operating on NO food that day and try to sleep since I am getting no sleep either. Samuel went off to his exam under anesthesia and I roamed the hospital in tears, alone. No where to go, nothing to do. I wanted to get out of here, but there was nowhere to go, no escape. I wasn't hungry at that point and it was incredibly hard to keep my composure while talking to the surgeons, etc. I told my night RN that I was grouchy and not to be offended. Samuel improved slightly after the proceedure but had a lot of gas pain. I asked for Mylecon drops and the Onc Resident just HAD to come over to check him first before okaying it. I was livid. Topping that off, he comes in and asks the RN who has only just "met" us how she thinks Samuel is. As if SHE had a clue. It became clear that day that we just need to get out of here and take a break. Talking with Mark about the decision of hooking Samuel's gut up vs. revising the ileostomy is not just a simple choice. What we choose now will make the decision about treatment for the future. If we take it down, we basically say we are leaving treatment because we don't want to further ruin the skin left on his anus. Revising it means we leave the treatment opportunity open and that just makes one more major surgery we subject him to in the future.
The surgeon assured me that there is an anatomical reason the stoma closed down and revising it will solve the problem. I am just sick over thinking of him having the stoma another four to six months after the misery of the last two.
Samuel was left on NG suction overniht and I hoped it would clear up but it was still pulling bile out at 4am. He was still in pain and I got him some mylecon and ibuprofen. The RN turned off the suction and I decided to pump him some milk and put it down his tube while his body could absorb it and see if that stopped the secretions and stomach upset. Of course, no one here knows I did that...well except those who are reading who work here, LOL. It was a sucess and the secretions stopped and so did his stomach pain. So I was happy about that.
Yesterday, my morning RN came in and I knew she was a float nurse, one who works in all the units. I woke up only marginally less mad then the day before and told her to prepare for a rough day. But in talking to her and telling her some of the events of the day before and hashing the things on my mind out, I began to feel better. We were able to talk about Oncology issues, Surgical issues and I was able to get the chip off my shoulder enough to have a decent day. I am so thankful to her for that. I have her again today at my and her request and it is making a huge difference in our treatment and care. Samuel woke up yesterday hungry for the first time in five days. I assumed they would want to start off feeds slow like the last time we were here and he was screaming "yogurt" when our RN came in. Somehow, she got him okayed for yogurt first thing and his attitude improved. He did not really eat much but the fact that no on e told him no was enough. I was able to feed him my milk and some chicken stock and he did great.
I was dreading the visit from our Onc because I was going to blow up if he even discussed the news from the surgeon which I had already been told. He did come in kind of sheepishly at first and sat down. He asked if the surgeon told me everything and I said yes. He did not reiterate the news which was a good call on his part. He did say that he guessed the hooking up of his gut was going to be a two part thing.
I said, "You are assuming I want to continue with chemo....."
He said, "I am assuming."
So we had a small chat about the day before where I told him I have hit the wall, I am done. Samuel cannot keep going through this. Based on my contacts with other Oncologists regarding Samuel's care, everyone seemed convinced that based on this WBC at diagnosis and the six month break we had to take due to poison complications, he will more than liekly relapse. I asked our Onc if he believed that. He beat around the bush a bit and then kind of said he worried about Samuel relapsing more than most of his patients. So I take that as a yes. I told him that if Samuel could not handle this chemo, how could he possibly handle transplant chemo if he relapses. So bearing that in mind, what are we doing? If everyone is convinced he will relapse anyway, why continue to cause this harm to his body. Why not hook him up and walk away? Give him a decent quality of life and take our chances. I told the Onc that HE gets to go home every night, we don't. Out of the last nine months, maybe two of them have been decent and they were not consecutive. This is not fair to anyone. He said when we have come to a crossroads in Samuel's treatment, we have always had a meeting to discuss it. He sugggested a meeting with Mark and I to happen this afternoon (today). I said fine but told him that maybe he needed to spend some time calling other Oncs to get their opinions and take the evening to think about Samuel's case as if it was his child. I told him, "I assume your children are all healthy?" He said they were. I don't want any decision made on our case at this time based on a chart, a number. I said, "we are humans, this is my flesh and blood. While YOU go home every night, I don't. I watch my child suffer day in and day out and I am done." The decision on which surgery Samuel has is going to be made today based on this conversation that is to come. It is a really hard thing because I wish I had a month to decide, but now I don't. I have to make this decision in the middle of a bad situation, on little sleep, etc.
I talked to the "voice of reason," last night. That would be Monika. Monika has been with us since the day Samuel lost his colon until now, and most days calling EVERY day, and I would never make a decision regarding the surgery without her input. Unfortunately, as an adult, she went through colon cancer, had an ileostomy, and then was hooked back up. She also went through chemo. So we talked a long time about the risks and benefits of hooking Samuel up, We talked about the skin on his anus and if diet and a few months off could make it manageable should we decide to continue chemo and she said no. It will be too much for him to begin using his rectum again and getting used to that, and then to add chemo, pain and diaper rash to that would be TOO much. So while we were leaning toward hooking it up and managing it as it comes, now I know we cannot do this if we continue chemo. We talked about the anatomy issues causing Samuel's stoma to pull in and in effect, his body is trying to close up that hole and heal it. So thi revision should stop that and correct the anatomy. Monika brought up the most important issues which I cannot seem to grasp alone which are that Samuel has been through SO MUCH that it would be awful to get this far and throw in the towel, have him die and then be left with the "what if?" question. If he can handle some treatment, we should try to get through it. And the MAIN issue is the loss of trust with the Oncologist and the treatment we have NOT received in the last two months. How do we get that trust back? Like she says, how do we get the Onc to listen to us and HEAR that we are indeed having a REAL problem, not being overreactive parents. Remind him that Samuel is unique, and they need to figure out a plan for HIM. Not use a plan for others. And she is right, my main problem with chemo and the Onc right now is the lack of attention, the sutuation I am living in now. How can I trust our Onc to continue chemo when he doesn't listen to Samuel's problems. That is the bottom line...I guess I know deep down that some chemo is necessary, this is a liquid cancer, and as Monika says, harder to kick. But at the same time, we cannot do this every month. Samuel's nutrition is suffering, his well being is suffering. The dye was cast at our former hospital with the protocol that was chosen for him. Because of that, Mark has not been able to work outside the home, I have had to multitask more now that I ever had in my life. At the rate we are going now, we will go broke, lose our sanity, and who knows what else. I am done. Something needs to change or we are out. Simple as that.
Thanks Monika for putting us all on the same page. I don't know what I would do without you. Our love to you!
The surgeons just came in and have okayed Samuel's TPN to stop. The TPN will be turned down to half and the lipids stopped. The NG suction can go bye bye and he can get full calorie diet today. Works for me. Can't wait to hear Oncology have a fit.
So that is it for now. Today is a very important day for Samuel, for us all. I hope our Onc is up to the challenge and able to meet the high standards I have set.
Thanks to those who prayed for us yesterday, your prayers made a huge difference. I mean huge. Thank you. Our love to you.
Update 2/4/05
It has been a long frustrating emotional day. I think I have hit rock bottom and I pray tomorrow is better. I think everything has hit me like a ton of bricks today. It is very hard to do this alone, even on the best of days. Days like today are worse. The reality of our situation and the decisions at hand have me on my knees tonight.
Samuel's proceedure was at 4:30pm. He was better last night and then went downhill again and felt worse most of the day. They irrigated out his stoma and stuff is coming out now but he is still laying in bed hurting. His rectal exam was great. His rectum, and pouch are in excellent shape. The skin barrier was a sheath. and is now clear. He can be hooked up which is the good news. The bad news is that his anus which had previously healed shut and then burst open resembles a burn victims. The skin on the outside which is similar to that of the GI tract is gone so they are concerned that hooking him up and then doing chemo which will drop the counts will end up with that same result, a red raw open wound that won't heal. There is always something and once again I am slapped in the face with yet another body part that will never be the same. The problem is that the poop coming out there will be acidic and watery and cause irritation, etc. The surgeon hesitates to hook it up based on the chemo regimen, of course all that is still up in the air...... So now we are faced with the decision of what to do and it is driving me crazy along with Oncologists NOT butting out, corssed wires between departments and a large chip on my shoulder that continues to grow. And topping it off, we will probably be in-patient another week once we decide how to proceed. I need to sleep and pray my attitude improves tomorrow....we have a lot to think about. Thanks for your prayers today....the news is mostly good and I should be happy about it. Maybe tomorrow I will be.
Update 2/3/05
Finally, after another long day of suffering, Samuel is starting to feel better. Of course it is 10:40pm so he will probably want to stay up all night to make up for all the lost time he has spent in bed.
Last night was another miserable night for Samuel. He woke up at 3am in more pain than he has had this entire stay. His NG suction got clogged and his tummy was full and hurting. He had morphine at 10pm, 3am and 6am which was better than the previous night but we got up and still heard NO bowel sounds.
The surgeons came through and were unhappy to know that he wasn't better and suggested a stoma irrigation...but then mentioned they did not want to subject Samuel to any more misery. As if the last two days were miserable enough. They had seen the CT but the attending who did the transplant last night had not yet so gave me no answers. They did say I could try to feed him something to help break loose the poop that seems stuck so I gave him some of my milk all morning and while he did not puke it up, I don't think much went down either.
Around noon, Mark arrived with the kids and supplies for us and Mark and I both noticed Samuel's stomach was growing. Looked like another ileus. He did not enjoy seeing the kids at all today and mostly screamed. Anna is doing great at home with Mark and I sent home 50 0z of milk for her so she is set for the next few days anyway. They only stayed about an hour or so before everyone was agitated and they left. We demanded that surgery come and reaccess Samuel asap and the Resident did come through but offered no solution stating that the docs were in the clinic and they would figure out a solution.
It proved to be another long and frustrating day. We were not moved to the Surgical side so we still have Onc Rn's.
Around 3pm, the Fellow Surgeon came in to talk about the plan. He is the one who has dilated Samuel's stoma now twice and did not want to irrigate the stoma this afternoon without sedation because he feels Samuel has been through so much he did not want to traumatize him further. Isn't that a revelation. Unfortunately I would have probably went for the irrigation because it would have saved Samuel more misery today. Anyway, the surgeon said that they did see Samuel's rectal pouch and the part of the sigmoid colon is still there. Good news. The only question is what the skin was that he found during the rectal exam a week or so back. They are planning to take him back to the OR tomorrow to dilate his rectum and see what the barrier is. If it is simply a sheath or small layer of skin, they will break through it and plan to hook up his gut either Saturday or Monday or Tuesday. If it is scar tissue or something no one has thought of, then we will be stuck dilating the rectum for 2-3 months to prepare it for use. They will also acess his anus to see if it will be able to pass poop properly. If we get stuck with the dilation for months, then they will revise the stoma and make it bigger and we will be stuck with the air bag for several more months. They are also planning to irrigate the stoma site but it may not be necessary if his progress tonight continues. I can hear good bowel sounds without a stethescope. Very happy about that. Not sure what they will find tomorrow. Could we be lucky enough to have the skin be small and easily opened so he can be restored? Oh, Lord I pray so.
I told the surgeon I wanted to talk with the attending about chemo and his gut further and also get a G-tube done at the same time. Somehow I keep forgetting to let Oncology know that little detail.
At the end of my conversation with the Surgeon, I mention that because Oncology is all about their poison and wanting to solve this the fastest but maybe not the best way, I wanted to leave them out of the final decisions because I am about ready to walk away from them anyway.....about that time the Onc shows up at the door. I am not a person anyone would refer to as quiet so I am sure he heard something anyway.
He exchanged salutations with the surgeon and then asked if I was told the "plan." The surgeon said he told me the plan was to have us under Oncology's service for the next two months....joking of course... My Onc looked at him and said, "she is about this far (holding up his finger and thumb about an inch apart) from hitting me already, DON'T tell her that..." Hmm, guess he got the memo. He has shown up to my room the last few days alone, without the usual cronies so I figured he thought he was going to get told off and wanted to spare the embarassment or something....
Anyway, he reiterated the "plan" which annoys me when I have already been told just five seconds earlier. Then he goes on to say that they are not planning to do any chemo before the surgery....I just LOL. I said, "really? That is so nice. I cannot believe in all the talk that you have never heard my wishes in all this..." He asked what my wishes were. I looked him straight in the eye and said, "No more chemo, we are done." I don't know what happened in this room after that. That was one of those conversations you wished you have taped so you could analyse later. The whole mood changed. It went from matter of fact to emotional...on EVERYONE'S part.
The Onc said, "You know, that would be great...but I can tell you what would happen..."
I stopped him and said, "No, you don't. You cannot guarentee me anything. Samuel could relapse tomorrow, next week, next month, next year, in three years, ten years or never. YOU don't know. There are no guarentees..."
He looked at me and said, "You are right."
I said, "this suffering endlessly HAS to stop. I cannot take it anymore, Samuel does not deserve it. If this is the way we get to the unguarenteed cure, I want no more part of it."
He agreed that Samuel's case has been a horrible trip and then reminded me of when we first came here and how awful everything was and all the hurdles we got overin a way I can only describe as emotional and pleading. I think I shocked the crap out of him for sure. He brought up all the shunt issues and how we did not even know if we could treat the CSF, or if Samuel would ever be Samuel again and reminded me (as if I could forget) how when we finally got a shunt that worked, it has never been a problem again and he got through a lot of things just fine. I am still trying to figure out what happened here. I don't know if he got emotional because he thinks he got us this far and Samuel will FOR SURE just die if we walk away now. I don't know if he secretly cares for Samuel more than I have been aware and is just afraid, concerned....something. I don't know but when we talked about how far we had come and even the Fellow chimed in on his suffering and how they have just seen nothing like it, everyone was emotional. I just about started bawling and had to pinch myself to gain my composure. I was so ready to be confrontational and ended up being emotional because that was the mood of the room. Had he been a jerk, I would have walked him toe to toe , no problem. He assured me...almost like a farher would, that when Samuel is hooked up, this will all be better. He talked to the Attending Surgeon all afternoon and is convinced that this is the best thing. I will try to pry that conversation out of the Surgeon tomorrow.
After I was able to speak without tearing up...ugh....how annoying....I said, "I cannot, in good conscious, EVER allow you to give Vincristine again..not ever." I reminded him that ALL these problems started at the first dose of it back in November and it has been a train wreck ever since.
He said it was not even on his mind, he did not want to give it for a very long time. I said again, "Not ever."
The Onc Resident must have told him today that I had a fit about the TPN raising Samuel's glucose levels to the high range. He tried to tell me that they were trying to put weight back on Samuel. I reminded him that kids don't gain weight on TPN in a week. Then he mentioned that they did not want him to waste away. I told him that people WASTE away on TPN because it is not proper nutrition. People die of malnutrition during cancer treatment even on TPN. He looked at me and said, 'You are right." I cannot believe the things they are trained to say and when you put the facts in their faces, they cannot disagree. So he must have told our Onc who assured me that this was a temporary thing and is not going to last over a week. He did this in a very caring way as well. I saw a side of him today I did not know existed. It was weird and I am still trying to figure out what exactly happened there.
At any rate, it doesn't look like we are getting surgical nurses or moving to the surgical side anytime soon so I am not sure what happened with that. Today, I mostly did everything myself. Our RN's came in to find me doing their job. Or telling them what they were supposed to do, or look for regarding the stoma working, etc. So I was sort of in control today because they are oblivious and to me that has been of some benefit today. So we will see what happens tomorrow. I feel better tonight knowing that Samuel's tummy is better, working and that I have pushed 10oz of my milk through his tube and it has stayed down. For that alone, his labs should look much better tomorrow. Our Rn from today is back tomorrow and never really commented on the conversation with the Onc and I though she listened in so I will see if she had a take on it.
I just pray we sleep tonight. I pray Samuel continues to improve tomorrow and that God give the surgeons what they are looking for in order to restore his body once and for all. What we will do after that is still up in the air.
Thanks so much for your continued prayers, notes and love. It is so nice to log on and find one of my friends has written me. The time passes strangely here and I am not even sure what day it is. Please pray for good news tomorrow. Much love!
Update 2/2/05
I have held off writing an update because there isn't much news, and not much good to say. I have been trying to console him all day which has taken up most of my time and energy, what little I have left.
Samuel spent all of last night in misery. He started puking even with the NG suction on. He also was in so much pain that he could hardly move and if I moved him it was sheer agony. It reminded me of the time before he lost his colon. I asked for surgery to come back to acess his condition but they had nothing to offer but that he would have the CT and stoma dilated today. I am starting to get the impression that "their" idea of suffering and mine vary because they looked at Samuel who was crying and saying "tummy hurt, air bag hurt." and did NOTHING. I was beyond frustrated. So he got morphine round the clock last night and we were still up every hour going down the list of drugs left we could try. I am finding myself getting angrier and more frustrated because all this could have been avoided.
I looked forward to today all night thinking that with the NG suction he would improve. He did not, he got worse. It got to the point where I just drove him all over the hospital this morning waiting for CT because it was the only thing I could do to keep him calm. Our CT was supposed to happen at noon but they did not show up for us. I ran into Mangesh, our favorite transporter and told him I was just going to roam the place, maybe even leave...they could overhead page ME if they ever got their act together. They finally showed up at 1:15pm. They took him to the surgery waiting room and he KNEW where he was. He immediately started crying that he wanted to leave. I went back with him while he was sedated and then had to leave. I got lunch, basically my first meal since being here other than the snack crap they keep in the fridge on the floor and some misc stuff I brought. Then I waited in the room. I am always happy when Samuel is sedated because I know that for at least that time, he is no longer in pain. The surgery resident came to tell me that they opened his stoma again and dark thick poop was slowly coming out now so I hoped he would be better. The resident only saw a little of the CT and did not comment on it much to me though I did try to pry ANY info out of him. The surgeons came round this morning and said they would see the CT and have a clear treatment plan by this afternoon. Well, apparently they forgot the liver transplant surgery they had on the books so they won't even see the CT until tomorrow. Talk about irritating. Samuel came back and he is NOT better. The poop in his bag did not drain like I had hoped but rather is thick and resembles the crackers he last ate, in undigested form. And topping that off, he has no bowel sounds which is not surprising due to the amount of morphine he had to take to get relief. His tummy still hurts.
The surgery resident who came in after the CT told me that surgery was taking us on to their service. I just laughed. He looked a bit dumbfounded and I asked if he had talked to Oncology yet. He had not. I told him he would get resistance. Not ten minutes after he left, our Onc came in and basically reiterated all the news from the CT with one new detail. He said that they were able to see Samuel's rectum but that it is collapsed onto itself. Now mind you that I am getting this info from an Onc and a Resident, if that is indeed the case, then the area will have to be opened and stretched and most likely a pouch made which is a seperate surgery from having the gut hooked up. This is not the news we are hoping for obviously because it just creates more problems to an already problematic situation.
The problem is that we don't have time to wait if the chemo protocol is going to continue to be followed. Something has to happen to fix this now. Oncology cannot wait to begin killing him off with chemo again and interestingly enough the labs that were drawn today were a complete blood chemistry and included looking for blasts. There are none but apparently, this small break has got the Onc nervous. Really makes you wonder about the cure rate they profess to have here. Our Onc is thinking that the surgeons will look at the CT tomorrow and perhaps take him to surgery, ROFL. What planet has he been living on? I will eat all the words I just wrote if that actually happens....
So I got down to business with him again and asked why we could not be transferred to Surgery's service. He still thinks it would be dumb and apparently told the Resident that he was still planning to give chemo......These people are crazy. I told him I wanted to have "Surgical nurses" not Oncology ones. Our RN's have not a clue what procedures we are going for, or how to care for the ileostomy, etc. I asked our RN why no one had ordered labs again to check his electrolytes and she remembered that she had forgotten to do them. Apparently the Onc wanted them to order TPN. Ugh, that has to be one of the worst parts. Samuel is now on TPN. I was hoping he would be back, his bag being filled with poop and ready to work on the huge storage of milk I have waiting but he is not. His weight was down to 13.2kg, the lowest it has been in over a year. I like how I have mentioned this to the Onc every week and he disregards it. Only NOW does it become an issue. I tried to explain to him that a person who has had that many problems from chemo ruining his gut cannot gain weight on a clear liquid diet. Of course he disregarded that. No one wants to say that their "medicine" poison would do that I guess. So the TPN arrived tonight and I thought of how happy I was to see it come at our former hospital and how UNHAPPY it makes me now. Not only do people continue to waste away on this stuff, but it now means we will be here a week because you just can't start it one day and finish it the next. If his gut works loose tomorrow, I can feed him and they will turn down the rate, but ugh! I hate it. Mark and I talked a long time about it tonight, we are pretty much backed against the wall. I guess it is most annoying because it reminds me of the beginning of the misery and a very long stay at the hospital. Mark joked that the Onc will probably have his dietician come visit and I told him if she does, then I will probably get kicked out of here because I am having a hard enough time controling the blaze of sarcasm spewing from it already. I won't even try to control it if she walks in here.
Maybe I just expect too much! I guess I should just sit here and watch Samuel suffer and try to think of the less fortunate kid next door who is puking their guts out from chemo. I don't know. Mark said that most likely Samuel is not the worst case waiting for a diagnosis, someone else must be suffering more. Isn't that an awful thought? Our RN from last night commented that it must be really hard for me to see him like that. The fact is sadly, I am used to it because I have seen it so much. It is still frustrating and sometimes alarming, but when I told her I watched stuff like this for two months, and I guessed I was used to it, she could not believe it. The difference now is that I know that NONE of this had to happen and again, it was allowed to manifest and that fact is what is so maddening. Makes me wish they all had ileostomies and chemo with broke out skin and no poop coming out of the bag. As Monika said, they just don't realize how painful it is or they would not sluff it off. She told me it hurts like someone knifing you in the gut. Or worse than labor pains. Samuel has been in that condition for two days now. Furstrating, maddening, and makes me want to throw things. Thinking that others here are being treated, or not treated as the case is here and their child is suffering needlessly makes me feel sick. What is wrong with this picture???? Besides everything.
Anyway, supposedly we are moving to the surgical side and getting surgical nurses as soon as a bed opens up. Of course they are full now. Our Onc was fine with that, but he is not willing to give us up to surgery until a surgery occurs. I told him it was fine as long as HE was on call. I told him that the last doc sucked and I could not stnad her. He laughed. I am sure it was no surprise. He did not bring chemo up to me which was a good call on his part. But it is still looming in his mind because as we were discussing options of hooking him up if that is possible now, or if there is a problem with the recutm which will have to be repaired first, this will have to be done after the intense chmo is done...(in his mind) Or he mentioned having Samuel's stoma dilated weekly....dumb dumb dumb. I told him so too. That would be like when we had his tummy tapped every week when the CSF was not being absorbed. This too caused tremendous pain and nutritional issues. I swear they are all about their poison. I told Monika tonight that I just feel so against anything Oncoloyg right now that it is hard to be around any of them, nurses and doctors alike. So as far as tomorrow goes, I don't know if we will have a clear cut answer then either. One thing that is obvious to all parties, something has to be done and done soon. The dilation of the stoma lasted a lot less time then they anticipated. Too many unknowns, too few options. If left up to the Onc to decide he will pick the fastest option so he can continue to poison Samuel. Ironicly, he thinks HE is making the choice. Thinking about it now is making my head spin.
The RN I have had the last two days took the time to read Samuel's chart history yesterday. She came in and asked me if his HCT was really 8 at diagnosis. I said yes. She wanted to know what he looked like. Apparently she had never heard of anyone surviving with a HCT that low. She explained that they don't have much blood flow, etc. It was an interesting conversation to say the least reminding me that God has a plan for Samuel because he kept him alive at a time he should have died according to madicine.
The Resident did comment on Samuel's stoma and skin looking BAD. Finally someone notices. I just don't understand why we cannot get the proper help we need NOW.
Mark and the kids stayed home today but will come in tomorrow if Samuel is feeling better. There was no point in them coming today because he did not utter any happy sounds and did not want to be touched, or even looked at too closely. As I have been writing this update, he has improved a little and is now talking to me without screaming. Still complaining of a tummy ache though.... I feel a little better hearing him speak rather than just scream. That will make Monika feel better too. He was feeling BAD while we were discussing the lack of good competent care and poor options that are presenting themselves. Anyway, I hope he improves a lot by tomorrow because I want to feed him and have Mark and the kids come in and bring supplies for what looks like another long week. He is doing well with the kids thus far. Anna only went on strike after coming in, seeing me and nursing. But she had no breastmilk at home. I will send them home with some this time. I miss her, and them all, but am so glad this is one on one, me and Samuel because I would be in the loony bin if I had A.D. too.
Samuel's newest thing when the doc or RN come in is to say "it's gonna hurt." And then starts crying. I guess the feeling good period was short lived and now he is back to feeling like crap and as much as I hate to give morphine, I asked for it again. Which is the lesser of the two evils?
Samuel's counts today looked great. WBC 10K ANC 10K HCT 37 PLT 600K and most importantly blasts 0.
Thanks for your prayers, and lovely notes I received today. We really need the wisdom of God to know how to proceed. Much love.
Update 2/1/05pm
Quickly so that you are not in suspense...NO surgery today. We know NOTHING due to having the WRONG team managing our care once again. Samuel's CT was halted before it began because he is vomiting and unable to be sedated or have contrast put down the tube. Apparently our Onc nursing team did not mention this to the Surgeonw who had NO idea we were even having issues. Samuel has spent another day suffering for NO reason other than stupidity. I just had a chat with my Onc and it seems that now things may move along faster. The bottom line is the CT is now on for tomorrow and Samuel will spend yet another night in misery due to POOR planning and miscommunication between Oncology and Surgery. The surgeon came out of the OR to speak with me directly in CT when he found out how bad Samuel's condition was. On a better note, everyone now realizes that chemo is OUT. Thanks so much for your notes, support and prayers today, they mean a lot on these not so nice days. At this point, it looks like we may be here at least a week, possibly longer. Samuel is crying and saying he wants to go home, his tummy hurts, his air bag hurts, etc. I would cry if I wasn't so disgusted. I still might. Now I know why I got no feeling as to how the day would go....because nothing has happened.
2/1/05
Just wanted to send a quick note of thanks.....
There are some WONDERFUL donations that we received in the past 12 hours. Once again, we are overwhelmed by your kindness and generosity. While Samuel was in the clinic yesterday I asked Mark what we could have possibly done to deserve this horrible fate....and by the same token, I often wonder what we did to deserve such an outpouring of support and love from you all. Thank you for helping bear the burden with us. We literally walked in here with $16 after all last month's bills were paid. Kind of scary. You all touch my heart...I am sure it is hard to imagine how one can feel such pain and sorrow at times, and then feel such relief, joy and love which can take over the bad emotions. Our heartfelt thanks to you all.
I received some lovely notes of encouragement and prayer today. I am so thankful to those who take the time to write. It means so very much. I have heard from some people I have not heard from in quite some time and it is heartwarming to know you all care, you are out there, and most importantly you are praying.
We went to bed last night at midnight and got up at 4am. Samuel was miserable and in a lot of pain until around 7am when it was finally managed. Your notes lift my spirits at even the darkest hours when it seems like we are the only ones in the world suffering. Samuel is finally sleeping soundly.
I spent some time in prayer this morning, trying to get a feeling of how the day will go, begging God for yet another miracle. So far, I know nothing new but have demanded that Samuel be added to the schedule today, either for the hook up of his gut, or just to open the stoma so he can get relief. I am praying that Samuel's miracle continue and they find all the anatomy intact and usable and that the last "exam" findings were a fluke. I am still torn up a little thinking that he might get his body restored. It is a big surgery, and I hate to send him off to be cut up, and I hate more, the waiting, not knowing what they will find. It seems now like he was born with the "air bag." I wonder if he will mourn it's loss. Probably not, last night it had to be changed and the skin looks worse than ever. His counts are up enough that a surgery can take place safely but of course all does not go off without a hitch, MY Onc is thinking he is giving chemo today! So I have informed all who are doing our care currently that this is NOT going to happen.
Please keep us in your prayers today, I want to write the update that says "Samuel body has been righted."
With all our love.
Update 1/31/05
Just a quick not to LYK that we are inpatient again. Not sure for how long but the plan is to hook up his intestines if the anatomy is there. We will do at CT tomorrow to see what is left. Please keep us in your prayers that we get a good report tomorrow and the surgery can happen asap, like in the next day or two after so Samuel won't have to starve in the interim. Daniel was in tears tonight finding out we were staying again and I feel a bit emotional thinking that this is really (possibly) going to happen. I don't know whether to be thrilled or cry but as I told our Onc briefly, they will hopefully now resolve the last issue caused at our last previous hospital. More later...
Update 1/29/05
Well we have ended the week knowing little more than we started with. Samuel's intestine issue is still a mystery. The Surgeon did not call me this week, why am I not surprised? I called the NP yesterday who knows us and got her on the case. She called me back at 4pm yesterday to say the the surgeon was REALLY busy...again, big shocker, eh? But he still wants to manage this on a clinical basis....yet we have no clinic appt. He reiterated that if surgery is needed, he wants to "close it up" meaning take it down, hook it up. Of course we don't know if that is possible yet either. I told the NP that he HAS to get another CT done proir to any surgery plans to check the anatomy. She was not sure if the surgeon had spoken with our Onc yet or not but I am guessing he has not. Oncology did not call us all week, another surprise. I told the NP that I was fine to continue to manage the stoma issues here for the weekend but that this was not a good option for much longer than that. I asked her point blank if we would be better off inpatient and she said we would. Then we would be under their nose and they would be forced to deal with us. My plan is to ride out the weekend, get as much work done as I can and then call Oncology Monday and get them on the case. One thing is for sure, they have chemo sitting on a shelf that Samuel did not get and once the realize that, it will burn a hole in their pockets.
Mark and I are still all for hooking him up if that is possible. We know that the Onc will throw all the relapse issues in to try to change our minds. So many of the decisions made in Samuel's care in the very beginning were made with the fear of relapse. Mark and I know now that ANY child can relapse at ANY time regardless of whether they followed the protocol to the letter, or not. They can relapse on treatment and off treatment....it is a crap shoot. At this point, our child has done nothing but suffer for the majority of the last nine months and we owe him some restoration at this point. I want his body restored. I want his pain at that stoma site gone. I want him to have some semblance of normal. In thinking of the future plan, treatment or no treatment, some of the chemo or none if it. I remind myself that God is in control here. He gave me this child whom I did not plan. He did not give him cancer but He is allowing us to go through this. So if in the end He wants him back, then it is MY job to make sure that EACH of his days on earth are the best they can be. I am sick and tired of this crappy quality of life that we are just supposed to accept. If Samuel is going to be bound to a life of misery and suffering, then in my mind, he is better off in heaven where there is NO suffering and I know Delma would love him in my place. Of course, in my heart, I never want to see him go. While talking with Tracy last night I reminded her of all I have learned in the last year, mainly to NEVER give up regardless of how bad the situation looks. It looked bad for a LONG time. One thing we know, Samuel WANTS to live of he would not have survuved. And he not only survived, but he defied all the odds of a full recovery. Tracy and I talked about how that desire to live is not something a two year old really knows. It is not like he is an adult or even an older child who mentally has a desire to live. Tracy said, "That is the Lord inside of him living on so that He can be a testimony." This hit me smack in the face. I told God, way back when....to either take him, or fix him and do it NOW! While it did not happen in my desired timeframe, he is still here and he is fixed for the most part. I hope that we will be fixing the last part soon with God's help. A lot of people feel like God has a plan for Samuel to have a LONG life and while Tracy and I were talking about getting a WORD from God as a burning bush, something so clear you can't help but know what to do, she gave me one in her words last night. The Lord is in Samuel thriving despite the odds, and showing me a joy that only the Lord would know. Even though Samuel's days are constantly filled with pain, he is still able to smile and radiate joy. Just look at his newest picture above and tell me if he looks like he has been drug through the darkest pits of hell.
We know God has a plan for him. God is alive in Samuel and He is in control. My plan is to make each day with him the best it can be and not make decisions based on cancer. I believe our miracle during the summer also includes a complete healing from cancer. What we do now as we go forward will rest in God's hands. Please pray specificly for us to hear God, whether it be God in the form of a note, prayer, friend who speaks life into our situation, whatever. We need to know how to proceed in a way that causes no more sorrow to Samuel. This year needs to be a year of restoration fur us all.
Thank you for your friendships, kind words, notes, and to Staci E for sharing personal things with me....YOU are always a blessing. Much love to you all!
Update 1/27/05
It is inevitable that after feeling so many awful emotions over the last few days, one HAS to feel better eventually. Samuel is a happy happy man today. He finally worked the last of the food out and is feeling good today on a liquid diet only. The NP did call me back yesterday to LMK that the Surgeon woudl be calling me in the next day or so to discuss the plan. I reminded her that we were ONLY home because of the NG, and without it we would be emergent. I was happy to manage things here with a liquid diet only but they need to get us some answers and figure out the problem. I think I impressed upon her enough that we need a plan soon so I hope to hear from the surgeon today. Of course, it is all much easier to deal with when you are not getting up at 2 in the morning with someone violently puking. You can almost pretend things are normal, or normal for us anyway. No call from Oncology yesterday but it is looking like I will need to get them on it soon if the Surgeon does not contact me today. It is a sad reality when it is obvious we need to be inpatient to get this sorted out. And if I had all the time in the world, no money concerns, no family to care for, etc....I would take him in now and wait on them to find time for us.
I spent yesterday doing some cooking, cleaning and even managed to get some schooling in with the kids. It is so nice to do normal things but I still feel like there is an enormous mountain in our midst. Still so many unanswered questions. I guess I just have very little patience in waiting. Mostly because I know we have been dealing with this problem for much longer than the week they think. If this had just shown up in the last week, I might be much more patient. But since the last two months, with the last month expecially has seemingly been full of "little blockages" and when food was eliminated, they improved, but when food was added back, they got worse again, it is obvious that things has not been right for quite some time. I am just tired of him suffering needlessly and seemingly endlessly.
I told the NP yesterday that the LAST thing I want to have happen is for them to open him up thinking they are going to hook him up only to find that they cannot, it is not possible. Getting him hooked up with be the most major surgery he will have to date because of the complexity and the recovery and healing time needed. The "what if's" were driving me crazy yesterday but thankfully, thanks to my wonderful husband, I feel better today.
Thanks to everyone for their notes, prayers and encouragement. Your words mean more than you know. I plan to enjoy the day and as I told Kaysha last night, "be thankful for every day that Samuel is with us." I have a lot to do today....life goes on. Much love to you all!
Update 1/26/05
Samuel was up and miserable at 2:30am until he puked several times. After his barium was in for awhile, they told us to go eat, so we did. Samuel ate a little. I KNEW it would come back up...it did. The Radiologist did not see anything in the preliminary glances of the x-rays but there is STILL a problem. Now we wonder if Samuel's stoma has shrunk already. We were told this was a temporary fix, lasting a few weeks at best. His pain and pressure at the site are back already. My concern yesterday was that our case will fall through the cracks. I called the surgery NP today to let her know that he is NOT fixed. She asked me if I could take him to his Pediatrician????? What? How is she going to help? We already have a surgeon, all she will do is refer us back to Childrens. Honestly, what is wrong with these people. It looks like the Surgery Clinic only operates on a limited basis and while one of the docs said we could be seen there, apparently he was unaware of how difficult it is to get there. So I mentioned to the NP that I guess we need to be inpatient to get the attention he needs at this point. She is going to leave a message with the Surgoen at this point and see where we stand. What will happen now, is that Oncology will get the word that the scan was "all clear" and be calling to schedule chemo. I am so burnt out with them right now that I don't even want to talk to them. We had it all planned out to get Samuel his fluids prior to the scan and the person who was supposed to do that did not even show up to work on time so it never happened. We left an hour early for NOTHING. He was accessed and we were told labs would be drawn since they were ordered for the day before but when we got back, someone told us the blood was wasted because he was not getting chemo. I am so tired of it all.
As Monika says, we have been there TOO MUCH. We need a break. You cannot go there as many times as we do and not have a negative experience at some point she says. This is true. I told her I was going to have a meltdown last night, and I did.
After last night's vomiting, I can just see us back there, possibly today but more probable later in the week. I went to sleep to get away from it but dreamed of Samuel in misery instead. There is no escape. If the puking continues, we will be living there again soon anyway.
When is enough enough? I told Mark, let's just get his gut hooked up and tell Oncology to shove it. The side effects are too much and not worth it. Either that or maybe in the two months time of a break he will need to get hooked up, I might feel differently....BUT we need to have a huge meeting with the Onc and a few others to tell them, NO VINCRISTINE and NO STEROIDS. Period. And of course this further screws our prognosis/outcome in their eyes. In my eyes, Samuel got his miracle when he overcame all the obstacles through the last spring and summer. He is and will forever be cancer free in Jesus's name. What are we doing? Honestly the ONLY reason we are still home and not inpatient now is that Samuel has the NG tube.
