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, hi
