8/28/05
Samuel's butt just continues to improve each day. Today it looks like all the skin has healed toward the backside and turned into a big callas like skin. I don't think I have seen anything like it before, but I guess that his skin figured out it better toughen up, or else. His poop is getting farther between with transit times from food in to food out being 4-5 hours and sometimes more. This is based on a mostly liquid diet so it is very good news indeed. I took the tape off all his new scars today and they are healing nicely. We still don't miss the air bag! Samuel has been happy and needing no more morphine for the last few days. The funny thing is, now that his butt is looking better and improved beyond what we expected, he is more and more reluctant to get his butt cleaned up. In fact, he almost needs to be hog tied now to get at it. I guess he hasn't realized that it doesn't hurt so much anymore and is just being overprotective. He actually enjoyed the tub today for the first time since we left for the surgery. He played, swam and almost enjoyed it. Still worried that it might hurt something. He got to go with Mark alone to visit Nana and Papa and got to play with his similarly aged cousin for the first time since Easter of 2004, right before the cancer diagnosis. Yes, it has been that long! I did not get to see them play, but Mark said Samuel was a little shy at first and then played nicely. I am sorry I missed it.
I dreamed I was at the hospital again. Why, I don't know. I don't think I have ever dreamed I was at the hospital, but come to think of it, I don't dream much anyway. Funny I would dream that since that is the LAST place I want to be right now. I must have missed Julie, since she was our RN. Hmm. I am so thankful to be home watching my baby live his life and get on with things. As each day passes, I see more of myself in his actions. Moreso in him than in any of the other kids. Mark says he got his anger issues from me.....well, I think it speaks well of my anger management that I made if through the last 16 months and did not have to go to jail once, LOL!
Well, this page needs to be archived so that is it for now! Much love.
8/25/05
Things continue to improve for Samuel today. Tonight, his rash has improved by another 50% over yesterday. I am seeing more new normal skin emerging and less of skin that looks like a burn victim. I imagine that by tomorrow, the really red raw looking skin will be well on the way to healing. His anus looks great and tonight he was pooping small soft turds! Not even two weeks post op and we are getting almost formed poop! No more watery poop, no more water seeping out all day. Samuel is eating a little bit here and there by mouth as well. He has had another good full day of play, a nice nap this afternoon and we were even able to get out to Walmart this eve for a very quick trip. He did great and enjoyed leaving. He is also peeing really well, which means less runny poop. We still have a ways to go but I would say that suddenly he is way ahead of schedule given that we were told we would ahve weeks of misery first and that it might take 6-12 months to get formed soft poop. I pray it continues to heal up on the outside and look promising on the inside. I still have not washed the diapers yet, that is two days now! Tomorrow there will be a big load, but it is amazing what a difference just a few days have made.
I have been visiting via e-mail with a friend very versed in the alternative diet and natural medicine and I just want to c&p a portion of her response to what we were told to expect post op, and what I have thought we might see instead, which is coming to pass. That would be Samuel healing quickly and recovering well due to his diet, etc. This is her response....
Do you know everything in medicine is based on bad diet. Normal body
temp is based on bad diet. Resting heart rate is based on bad diet.
Hormone levels are based on bad diet. Every imaginable test result is
based on bad diet. I know for a fact those results are not normal
results. A more appropriate word is "typical" results. There
shouldn't be anything normal about them. They are based on bodies that
are under attack, that are trying to survive, that are having constant
immune responses and I could go on.....
Makes perfect sense to me. We took responsibility for Samuel's diet a bit over a year ago now and nothing since then has fit into the "Medical" mold of normal since. So is it worth all the time, money, and work? You bet. Saving his life is worth every minute, every penny and all the work involved. Thank you for your continued prayers, they are working! Much love.
8/24/05pm
Just wanted to update all the prayer warriors tonight....we have seen the light of relief! Samuel had a rough morning and ended up getting morphine at his naptime. He took almost a four hour nap and when he got up, I noticed that his butt looked a lot better. In fact, by tonight, the rash has reduced in size by about half which is very significant. We still have a ways to go to get it gone, but his anus looks great still AND he went outside this evening and actually played. Not just sat in his swing and tried not to be miserable. He actually played with the kids. His spirit tonight has improved a lot and he is no longer pooping with screams. In fact, I noticed that he is starting to pee really well and also that his poop is no longer watery and there has been no water in between poop either. We both think that the puking this morning was a fluke thing because he has been fine ever since. He has ate some little things all day which has made him happy. I would swear that I have used less diapers on him today as well because I have not had to wash a load today. It would be so awesome if this would really clear up overnight and be gone tomorrow sometime.
Of course, my attitude has improved seeing him feel better. It really wears on your spirit to do this day in and day out. I am so thankful for the break and pray it continues to improve from here because NO ONE misses the air bag. In fact, Samuel decided to get into the rocking chair today and start jumping. Immediately, I was ready to check his air bag to be sure it was not full, leaking, or about to pop. Then remembered........ The checking for something that isn't there has not really struck me until today since he has been so miserable up until now.
It is amazing how you can get into the habit of working your butt off, then take 8 days to sit on your butt, and easily fall into that lifestyle. Getting back to work has been really hard. I swear for every day I am gone, I need that many days to get back to normal when I get back. I hope that tomorrow I will be able to get in gear. Samuel has been very high maintenance and the whole thing has just wore on my emotions, oh and then there is af who knows just when to show up.... I feel like I need to sleep half the day away and I have been sleeping most of all night the last few nights. My mind and spirit need a break so "I" can get back to normal.
We have started school this week. Boy were Kaysha and Daniel unimpressed the first day. But I figured I cannot get too far away from Samuel these days so it was a great time to get back into the groove. Mark has been doing afternoon school and I have been doing the morning shift. There is nothing more satisfying than seeing them do well, except for watching Mark teach them. He does really well with them and they are very receptive and eager to please him. I don't think he realizes how well he does with them. It makes me very happy. And it has been pretty amusing at times because two years ago when we started to homeschool the kids, Samuel used to come in and crawl on the table and try to draw on their work. Now, he could care less about it but A.D. likes to crawl on the table and "help." We have set goals for them and there is a lot to accomplish. This has to be the priority right now because they have taken the back burner for too long.
Thank you for your notes, prayers and love. The past weeks have been very dark for me. Monika and I talked about how difficult it is to explain to someone what it is like here, unless they have lived it. I am thankful to have a friend who does understand the torment that Samuel endures as well as how one might feel as the mother. We are on the right track. Please keep praying that things continue to improve for Samuel and he can enjoy being a "real boy."
8/24/05am
Another day of torture done, a new one begins.
Yesterday Samuel woke up and cried that his air bag was leaking. The poor baby woke up with his diaper leaking and forgot he doesn't have an air bag anymore. His butt remains about the same, not better, not worse. Yesterday morning was better for Samuel than the previous day. He was also able to take a nap without torment. But by the time he got up, it came on in full force. The screaming, the begging, the pleading, the non-stop pooping. More morphine and some outside time helps take the edge off. Seems like we are getting less diapers a day but I am still washing a load daily to keep up.
This morning he woke us up with the "cough of doom" at 5am and then came the puking. "Mama, Pooper puked!" Then crying. That cough would wake you out of a dead sleep anywhere anytime. And that brings back memories of last year trying to get him eating again and him puking several times a day. The smell is the same too. We clean him up and change his bed, his clothes, his diaper and he manages to get back to sleep. This morning, I notice that it has been several hours since he has been fed and his poop smells identical to his puke, undigested acidic food. Not good. Yesterday I noticed his poop was faintly starting to smell. Up until then, it hasn't really smelled much at all. In the air bag days, the smellier the poop, the better digested the food was. When it did not smell, we knew we had problems. Or if it smelled like the food that went into the tube, problems. So I don't know what is up today. He hasn't puked since this morning and it could just be that that particular food turned his tummy. But puking is a step backwards if it persists so NOT a good thing right now Despite this, he has been pretty happy this morning other than when he poops. We shall see what happens.
Well the first talks of what to do about chemo have started here. The Surgeons mentioned that he could potentially start chemo at the 2-3 week mark. That could be this Friday. That just astounds me that they can be so concerned about it healing properly and allow that. Mark says that he KNOWS my feelings already. Well, who doesn't? Obviously anything that causes GI toxicity is off limits. He may not regain sphincter control for 6-12 months and that means diapers. Any diarrhea will cause us to be right back where we are now. Plus add chemo, possible low counts, no thank you. Steroids are just not an option. 6MP may be blacklisted too. Vincristine is already blacklisted. That only leaves spinal taps or weekly Methotrexate. Doesn't bother me. Chemo is no guarantee of cure. It never has been. In Samuel's case, it is a guarantee of more problems. Mark and I both agree, this HAS to be his last surgery on the gut. We won't jeopardize it. It is obvious to us that if we had allowed the first month of Delayed Intensification, he would either be dead or hospitalized for more months. So I am glad we spared him and ourselves that misery. We both agree that if he should ever relapse, there will be no further chemo, no transplant, nothing. Unless it is non-toxic treatment, that will be it. So it almost seems stupid to continue poisoning him and taking more chances with his gut when it is only causing more harm at this point. According to our Onc, with only the first month of treatment, you know the one that almost killed Samuel, had he stopped then, he would have a 50% chance of cure. They only gave us a 70% chance with a supposedly proven protocol which we have never followed. So bearing that in mind, I am feeling pretty done at this point. We are relying on poison to keep him in remission. I don't buy that anymore. Not that I ever did. I went into this with my eyes wide open knowing we were poisoning him from the start. What is the solution? No more harm. If it causes harm, it is off limits. I believe he is cured. More than that, we owe him the best life he can have.
8/22/05
It has been a day from hell. Samuel has spent the majority of his day crying, begging me not to wipe his butt, begging me not to put him in the tub, telling his poop to wait or stop. He was unable to even get in a good nap today due to torment. I gave him ibuprofen and it did not even touch it! He has literally cried and begged for mercy so much today that I broke down too. In the tub, he reminded me of a woman in labor. A slave to the torment and no one can help, they just sit and pray, watch and feel awful as the person suffers until it all ends. Except in Samuel's case, it has not ended and we don't know when it will. I finally gave up on doing anything else but sitting at his bedside while his butt aired out. I tried to keep him diaperless for the better part of the day. It feels like we have gone backwards today. I feel so angry right now and as I have told anyone who will listen, it better get better, and it better be worth it or someone is going to die. I am sick and tired of watching this baby suffer endlessly helpless to it all.
The day started out so well too. He again, slept through the night and last night was even pooping silently which was a first. I would check his diaper and find a surprise rather than know it was there by the screaming that came before it. He slept in until almost 9am and had an overloaded diaper but seemed okay. He asked to eat today and did eat a little yogurt. But as the day wore on, it seemed like he never peed and was having trouble pooping. At one point, I sat him on the toilet and tried to get him relief there. He did poop, but not because he wanted to or tried, it just seeps out. And he just sat there screaming for me to let him get off. Afternoon turned into eve and I was getting very concerned that he had not really pooped much today other than either water or very small puddles which were eroding all the good I did healing his butt yesterday. I talked to Monika and told her I was trying not to freak out. We ended up giving him morphine at 5:30pm to try to get the screaming to end. It did. The older kids are also feeling like going crazy with the amount of screaming Samuel has done here today. They seem to forget that they can LEAVE the room and get away. We took Samuel outside hoping to distract him and I gave him a full 8oz of just plain broth to see if he would either poop or pee A LOT at that point. He got relief from the morphine, again, the typical dose that a kid fresh out of surgery would get, and became pretty happy, although then drunk. It was a relief. But not half as much of a relief as having him both pee and poop finally. He peed first, and then pooped a huge puddle of paste about 9pm. Looking back, I got my wish, which was for him to go less frequently. The bad thing is the watery secretions that have come in between all day and made him miserable. I guess we will just give him more daily doses of morphine from now on. It is such a hard choice to make because I like my baby normal, not on drugs and drunk. But at the same time, I don't want him to hurt. Oh, and I don't want him addicted to morphine EVER again. Hopefully these secretions will diminish as the rectum comes back to life. Well, at least he feels relief now and so do I knowing it is all still coming out okay.
My positive attitude has flown right out the window as this totally sucks. Poor Monika, telling her about Samuel's day brought back all to familliar memories of the past for her. How many more days of this do we have? Please pray it is not many. My goal right now is to try to keep life as simple as possible.
8/21/05
I think we are making progress! Again, Samuel defies logic. I think not feeding him before bed will stop him from pooping, but after feeding him three large boluses last night, it is obvious that that is the way to go. He slept through the night, but only after crying himself to sleep. We had to give him morphine and benedryl to get him to bed finally. It was pretty awful. He wasn't that bad all day but I guess he just could not get comfortable last night. Once he was able to sleep, he did. And I never heard him cry or make a sound until 6:30am when it was obvious he pooped. It was a huge mess, but I think he only did it then and it was pasty which was a good thing. The night before, water just leaked out all night and it seems now, the way to go is to feed him big boluses ever few hours and give the gut something to do all the time until his rectal pouch and rectum adapt to their new jobs. Ultimately, we were told he would have 4-5 bowel movements a day. However, so far today he has had 4 and it is 10:40am so that is abbot one an hour which is MUCH better than five in ten minutes. My dirty diaper bag is once again, almost full, but still less than yesterday and by about half from the day before. I would say we are on the right track. I am really really happy about that. I will take one an hour and sleeping through the night free of torment for now.
His skin also is looking better. Thanks for all the suggestions on what to try. We have found a winner. Once you get it on, you cannot get it off. I know because it is currently all over me. Here is the interesting thing that we note thus far. His butt cheeks are the red raw sore area. His anus and the tissue more in the crack looks better than the cheeks. In fact, I put medicine into his anus and he did not even mind but he comes unglued if you touch the cheeks. He is not wanting to sit much. But with the help of morphine, he was able to go outside and swing last night. Well, both of us are amazed that his anus looks so good right now. In fact, if he was able to control his poop and was potty trained, we would be living the good life. Of course, this is not an option if you cannot control what is coming out. But, when his gut rotted out, his anus looked like someone stuck a red hot poker in it. It almost turned inside out and you could totally see inside. His butt cheeks were never affected. That skin should be fine once it gets used to poop. But I am just so thrilled that the indicator of what the inner tissue is doing, the anus, looks GREAT! This is what everyone was worried about most. It may be that the amount of cream/medicine we put there is able to coat and stay and not be absorbed by the diaper and that is helping a lot, but as we now realize, that is a big indicator of what the inside is doing, and in that case, it is doing well. The outer skin, while painfully raw and sore, will toughen up soon and is looking better by the hour.
Monika told me that currently his rectum and rectal pouch are just not used to the poop that is going through and violating them, so it is compensating currently by getting rid of it as soon as it enters. Thus, not doing it's job. As it gets used to the poop entering, it will start to relax and dehydrate to the best of it's ability. As that happens, the water should get absorbed better and the pooping should become less frequent. She figured about four weeks or so. Each day gets us closer to him getting more regular. And I have not given up on God restoring his colon. I know He can do it.
Kaysha and Daniel came home and as I expected, Samuel perked up a lot. He ran around a bit and was pretty happy. He was able to go outside and swing for awhile but unable to walk due to morphine. Today, he has been pretty happy, only sad when he poops.
One of my favorite movies was on this morning and I actually sat down to watch it. Cool Running's. I think I see it every year or so, but never from the beginning. Today, I saw it almost from the beginning. Cool Running's means Peace be the Journey. How symbolic for us this morning. That is my wish right now for Samuel, for us. Peace. That movie seems so similar to my life right now, but on different levels. Being different, being the underdog, being made fun of, and never giving up even amongst the worst of situations. It reminded me that we need to look forward today and enjoy the peace that is in this household today even though things are still not what they should be.
I will take an inventory of my blessings today and enjoy my children and husband. Life's joys can just be stolen in a blink of an eye but today I say Peace be the Journey. Much love.
8/20/05
Samuel and A.D. are napping and I thought I would take a moment to let you know we are so happy to be home again. Coming home always has an adjustment period and this time is similar. Again, our lives have changed incredibly so getting into the swing of things may take awhile.
Mark had the house nice and clean when we arrived home. I comment on that since I have come home to a disaster area in the past. I had it pretty clean when we left though so all he had to do was maintain. We have left for many unplanned trips to the hospital and left a mess so trying to clean and maintain at the same time as entertain three kids is a lot for anyone to do. I am only partially unpacked and currently feel like doing nothing. I got my wash from 8 days at the hospital into the washer and dryer and now laying on the hallway floor making room in the dryer for the first diaper load. One day of being home, 30+ diapers. Looks like we will be washing a diaper load daily around here for awhile because that amount doesn't even include A.D.'s diaper needs. I need to go put my stuff away but am not feeling really motivated at the current minute.
Samuel has come home and seemed really similar to last year at this time when we came home after three months of being gone. He either lays in bed, or sits in his black chair all day. He wants to be carried and if he does walk, it is with legs far apart so as not to rub his sore butt cheeks together, or he limps. He has not asked to eat a thing, and has ate nothing by mouth. It is a little bothersome but I also know he will eat when he is ready. This is why we have the tube after all. He was in and out of the tub 5 times yesterday soaking his butt which he did not appreciate at all. He cries that he does not want you to wipe his butt, or says that this is NOT fair. Boy, he sure does understand a lot. He goes in spurts of pooping every few minutes to lasting a hour between poops. We are not talking about huge explosions of poop but rather small puddles, and in some cases, just water. I am so thankful to be able to use cloth exclusively with him now. It seems like we have come full circle in a lot of ways. We can finally use cloth full time again, with both kids, and I have resurrected the wipe warmer that I bought when he was a newborn as well. It is very consoling to me to be using the diapers that I designed especially for him three years ago, today. Only, now the stash is bigger and a lot more colorful. The last 24 hours have just made me feel a lot happier having him in cloth again.
Tending to his butt is beyond frustrating for everyone. He hates it. It hurts. I try not to touch it a lot, but it must be clean. Upon arriving home, I have a vast assortment of creams to try and think we might have finally found a winner in one that was given to us at our former hospital when this whole thing started. It was useless then however, because nothing could stand up to chemo poop with no white count. However, now, it seems to working very well. I am also pondering mixing it with a few other helpful ingredients to see if I can speed up the healing time.
So how bad is it? We were able to get a really good look at his butt and anus and incredibly, the anus and all areas internally look better than the butt cheeks do. We were a bit surprised but I guess it makes sense because some of the creams are absorbed into the diaper, where there, they are not. The pain is pretty awful for Samuel when you touch it. It is amazing how quickly he can move away from you in his bed if you are close to trying to touch it. Especially considering he is not wanting to walk currently. On a scale of one to ten with what happened to him at our former hospital being a ten +, I would say this is about a 6. It is not broken out, bloody and when you soak it in the tub, he does not come up out of the water because it hurts. It is sore to sit on, but he manages. In between poops when it is clean, he hardly notices it. The redness is pretty widespread. But obviously, we would prefer it to be gone, and gone NOW. I am amazed that the hospital would not do more experimenting with things that could help kids heal faster because they know how bad it can get. We did give Samuel some morphine this morning to see if that took the edge off things and he seemed to get a little happier.
Some things that have become very clear are that if we can slow the frequency of pooping, we can get ahead of the game. The first thing I did yesterday, was to mix him a special food concoction with lots of yogurt. Suddenly, we went from water and chunks every few minutes to paste every 30. Then it spread to an hour. He could probably tolerate that well if his butt wasn't already broken out. I tweaked some things in his diet a little more today and he has not pooped in two hours. This must be a record. Last night I was up five times with him doing diapers so so much for the not feeding equals not pooping. He seems to do better with food so I might try feeding him tonight and see if I can get the changes down to three times or less.
Kaysha and Daniel have not been home yet. They stayed the night at Mark's parents last night and he left to get them now. I think Samuel will perk up when he sees Kaysha. Coming home always means doing an inventory on what we have done, not done, what there is to eat, etc. Figuring out what we need today and what can wait. Figuring out if we have enough resources to get what we need, what needs to wait. Personally, I am tired of starving or making do, so I sent Mark to the store to buy food while he is out. One thing that is obvious, with Samuel pooping all the time, we won't be leaving the house for awhile until that is under control, or at least, not sore anymore. They must have just ate macaroni, top ramen and cereal while I was gone because that is what is here. This pretty much happens every time I am gone though.
Getting back into the swing of things is hard. I am really tired today and just want to do the bare minimum. There are some days when life just seems like a cruel joke and coming home after another fiasco is always one of them. It is so nice to be home!
A few notes of thanks....
Kristen M. The kids did not get the gifts you sent yet but will today. Mark apparently did not go to the post office for the last three days. Thank you! You are so kind.
To those in the Mom and Me group helping us raise resources to purchase fabric so that we have a way to make money, thank you! Your support and generosity means more than you know. We could not have made it all this time without your support. This has been and continues to be an incredibly difficult time both financially and emotionally.
Serena H. Your package arrived to me at the hospital and Samuel loved the little duck. I also loved the things you sent for me. Again, perfect! Thank you. If I had your e-mail, I would send you a note direct. Perhaps I should call Toni????
Lastly, I am thankful to God for keeping us going and looking to Him to sustain us. Despite everything else, I have those I love here on this earth close to me and while I might not be rich in much else, I am rich in love. A.D. was so happy to have me home she had to nurse about 8 times yesterday!
Thanks so much for your prayers to to those who sent me notes a lot while we were inpatient. God bless you all today. Alright, I have to go do something now.
8/19/05
We are still inpatient. And the reason why is absolutely ridiculous. Anyone who has followed Samuel from the day we brought him home last year in July will be appalled. I tried to sleep off the horrendous day and I do feel a little less pissed off, but we need to get out of here today.
The torture started yesterday for Samuel. He was literally pooping five diapers in ten minutes. He would scream and beg me not to touch his butt. He literally came off the bed whenever I tried to put anything on it to soothe it. I went through 35 diapers yesterday, all poop. His butt doesn't look all that bad on the outside so the inside must just be worse. I have seen A.D.'s butt look much worse. Our kids are not prone to diaper rash as a rule so I usually don't have to deal with it. Coconut oil usually clears it up by the next change. As it stands now, I am using coconut oil, Lansinoh and stoma powder and pretty much keeping even. It is not getting worse, and not getting better. At one point yesterday, Samuel said, "it hurts. I don't want to poop anymore." Thankfully, I guess, he doesn't have control enough to decide not to go.
I quickly decided that the butt changing, cleaning torture is a two person job. I pretty much could not leave the room yesterday. I was literally doing a diaper and butt care every few minutes. I don't know how I will ever get anything done at home at this rate. It also became obvious over the last few days that I will no longer be able to feed him via the tube overnight or he will just be pooping all over all night and not sleeping. As it was yesterday, I had to get him morphine and benedryl to take a nap and even that was tormented. I talked to Monika who told me that this is what it will be like for a month or so. Sheer agony. It is so not fair. How much more does a little boy have to endure? I talked to Kristina, my mom, Mark and Monika yesterday who were all sickened by the shrieking Samuel did. I had to call Kristina five times to finish a conversation, you know, in between diaper changes. Once Samuel was able to start on his normal diet, his poop actually thickened up a bit, but I would say that it was still like water and chunks. So not much help. He did seem to go farther between poops when his usual diet was followed. So it seems like we can control it to an extent by limiting what goes in and when. I will probably have to starve him for a few hours before we leave just so we can make it home without stopping five times. Once the poop is in his diaper, it is like battery acid so it needs to be changed immediately. At first he wasn't noticing going, but now, you get a loud warning even before it happens as he anticipates it.
And as if that wasn't bad enough to ruin the day, our surgeon made an appearance to check on things. He asked how he was doing with eating. Well, we had just gotten the okay a few hours prior to his visit to eat and he had not eaten anything by mouth. Who could blame him? You ought to see what they try to pass off as food here. He just isn't interested. So I mentioned that he wasn't eating at all by mouth and I was fine with that since he mostly would choose junk anyway. He asked if his formula was ordered and I told him he is not on formula. He then asked what he was getting and I said REAL food. Then went down a brief list of what. I mentioned that he had gotten breastmilk and then kefir thus far and he looked bewildered. He left the room and told Esther that Samuel was obviously in a nutritional crisis and needed TPN started right away. Of course, I did not find this out until much later in the day and when I did, I hit the roof. So behind my back, the surgery team decided that they did not know what Samuel's diet was, and since no one knew what kefir was, it was obviously poor nutrition. Not to mention that breastmilk is just a poor source of anything as well. Now, the dietician for Surgery was JUST in here Tuesday and wrote everything down that Samuel was eating so it was recorded but I guess as I said yesterday, the right hand does not know what the left hand is doing. Esther gave me a heads up about the surgeon not thinking Samuel's nutrition was good enough to heal and I was pissed. I guess he is supposed to eat the processed microwave two hour old garbage they bring on a tray and THAT will heal him. Later she came in with a calorie sheet and told me that the Surgeon asked for a calorie count. This one left Esther and I both shaking our heads in disbelief! We were both livid. That did it. I told her that she could just tell him to stick it. Well, that is putting it mildly. I said something else, but I will not post profanity here so use your imagination. Esther said she did not want to get fired by repeating it. She was NOT impressed by the request either. I told her that their dietician was just here and wrote everything all down so why were they all acting like no one knew what Samuel ate. I guess she did not realize this so paged the dietitian and asked her to contact the surgery team. Esther told me later that when she told the dietitian that they felt Samuel was in nutritional crisis, she said, "well, without even looking, I can tell you that he is not. He gets more than enough calories." Esther also told me that he asked her what Kefir was.
Samuel got some pretty good feeds in and ended up with a total of 960cc's yesterday. He never puked and went out for two hours to hit the play room and ran around quite a bit. We were sure they would decide to let him go home since they stated that if he was eating and doing well, we could. His port was deaccessed because it needed to be changed at seven days. I asked them to leave it out as we were leaving. Esther did not even do vitals at 4pm because she was sure we would go. So at 6pm, the Resident showed up, walked right past us in the hallway and went into our room. I walked in and asked if she was looking for us. She said that the team had all discussed it and there was no way we could leave until tomorrow morning.....which is today now. I asked why. I told them I wanted a GOOD reason, not garbage. She said that they wanted to make sure he could tolerate all his feeds before leaving. I told her that after starving someone for SIX days, he wasn't going to just be on full feeds since his stomach has shrunk. And he was not about to eat the garbage on the trays here they pass of as "nutritious." Furthermore, he is not going to get back to normal until he gets home. And I wasn't going to feed him all night anymore so that was going to put things behind. She had no comeback for any of that other than to reiterate that we weren't leaving until tomorrow. I told her that I did not want to talk to her and to get the Fellow down here now. A few minutes later she returned telling me that the Fellow was on the phone down the hall. I had Samuel with me who was now crying and tired after running around for two hours so I looked for Esther, but she wasn't around. So I took him with and answered the phone. I told her right off the bat that I was not meaning to take this out on her and apologized for the behavior and anger that was surely going to follow. I reminded her that I liked her a lot and was appreciative of her support. She has done right by us always, in the past. She told me that she had to talk the surgeon OUT of starting TPN today and since that was the first I heard of that, I hit the roof. I asked her why if he was SO concerned with his nutrition status, they denied him TPN earlier in the week. They allowed him to starve for six days and NOW they want to start TPN. Are they NUTS???? She told me that the surgeon's concern is that Samuel won't heal properly without proper nutrition and I guess his answer is TPN. I think not. She told me that they would be making a huge exception to their rule to even allow us to leave this morning. They usually make people wait longer to be sure that the feeds are well established. And any of their tube fed patients are put on formula that they specify and write for, etc. Not whatever the mom wants. I laughed and told her the we went home last year with that diet and he puked all the time and never peed. I hired a ND to come up with a play that I had pretty much already in place already. He is just there for back up. The ND has told me in the past that if I was ever given a hard time about Samuel's diet, to have them give him a call. Guess this is not the first time it has come up here. Seems most of the docs are familliar with his practice so just saying his name got the desired response. I told her I had no intention of ever doing formula again. I asked why this is an issue now. Now when he is so healthy, bigger than he has ever been, and doing great. I asked why they did not bring this up in Feb when he was at his lowest weight. Then it wasn't even thought of at all. Her answer was that this was a major surgery. Really? Do they think I don't know this? Like I haven't been mulling it over for months and planning for it ever since the original ileostomy was done? I just could not even believe it. I asked her why it was that the right hand did not know what the left hand was doing. She wanted to know who was the right and who was the left. I told her that she was the left and the surgeon was the right. She was oblivious to why I would even think one did not know what the other was doing. I pointed out that the surgeon was under the impression that we are staying forever and that they told us we could leave today if all went well. And now, because of the surgeon's ignorance, or lack of information on what is considered a GOOD diet, we are stuck here in a "nutritional crisis." Yes, Samuel is just wasting away and in jeopardy of healing properly. Yet they will allow him to receive chemo in just two weeks. Total and complete insanity! I told the Fellow that I absolutely did not agree with the decision and obviously my only exit last night was to go AMA. I don't want to leave on harsh terms, but I will not stay past today. I told her that I am just so angry that a person who has had less than two hours of face to face time with us just automatically assumes the worst. She assured me that she had defended us and because she knows me so well, she was able to get him to okay us leaving today if his feeds are up to normal and going well. I am still waiting on their visit which I expect any minute. I agreed to stay through the night since we have no morphine at home and it would be nice to at least have that.
We got a night RN who was new to us and a hag. This only helped to top off the night. She muttered something about Samuel not having an IV and not being able to get his antibiotic or pain meds that way. I just laughed and told her it wasn't being reaccessed and they would just have to figure it out. She mentioned that the Surgeon was supposedly on his way up to speak with me and I said that I could not wait for that. If he came up, he did not come in. Most people don't like confrontation so I assume he is one of them.
I sat here last night trying to figure out what was making me madder. Samuel's sore butt. That is awful! The fact that because we don't conform to the "norm" Samuel is in nutritional crisis. The fact that the majority of this would have never happened if they would have spoken with their dietitian from the beginning. Or this, why does ' the surgeon stick to his forte, cutting people open and fixing them really well, and leave the diet issues to those who do that as a job. Or try educating himself before deciding that something he knows nothing about equals poor nutrition. What we do as a norm would no doubt benefit most of the patients here. And the bottom line is, that they can suggest whatever they want while we are here, when I go home, I do what I want. Seems to have worked well thus far, I see no reason to stop now. I just don't know why every trip we have in here seems to go to hell at the very end. I always leave never wanting to return. I am so livid that I doubt we will even go to the post op appt. Mark can just remove the sutures himself. I am done with this place. The breakdown of communication here is appalling. The bottom line is if you don't know, ask someone who does. How about the MOTHER? And if not there, someone else. Don't automatically assume YOU know best. And I guess the lesson for me is LIE, LIE and LIE. Oh, yes, we are on formula, lots of it. And he ate his chicken nuggets and french fries, all of them.
I was waiting for my Onc to show up and really make my day yesterday, but if he was called about the "nutritional crisis," he knew better than to come. Good thing because I would have told him off too.
Still no Surgery Team in here. My RN for the morning came in and recorded the diapers and the food done overnight. I don't see that there should be any reason they won't release us this morning of their own free will. But then last night I would have never expected what I got. So we will see. I will leave AMA today if I have to. Samuel got morphine and benedryl last night before settling into sleep. He slept well and has required no pain meds since. I guess it was decided to hold his antibiotic last night and determine today if he needs it. I believe I heard the surgeon madly say that to my hag RN last night but he did not step foot in here.
Finally.............
The Fellow opened the door and peeked in and asked me if I was going to bite her head off or if she could come in. I told her I had no issue with her, but her superior was another story. And the verdict is, we are officially being released. Good choice. Our RN asked how she could help me this morning and my reply was to just get us home quickly. She is a nice refreshing face after the hag of last night. Well, I must pack up and get Samuel ready for his homecoming. They will take the sutures out of his stoma site before we go and supposedly we are coming back in two weeks for a post op. We shall see about that. It will be interesting to see if my Onc shows up to discuss our next clinic visit before we leave. Not a good day for that.
Thanks for your support and prayers. Much love.
8/17/05 PM update
As I sit here tonight, I hope and pray this is my last night here. I am also praying Samuel does not puke again.
The day went as planned this morning. The catheter was pulled early and he peed within an hour so that was a sigh of relief for us. By 2pm the NG had pulled 40cc's out which was the max we could do to have it pulled. I promptly took that out so now Samuel has most of his body free of tubes. He spent the morning miserable again though. He would say, "I am sad," or "This is terrible, mama." Or "I hurt." Esther brought him some torradol at 1pm and that seemed to help a lot. Mark and I talked about how one would feel if they had been starved for six days and we both figured we would feel weak and listless. About the way Samuel has been. The last two days, he has not wanted to leave the room, or sit up in his bed which is unlike the begging he had done to get out of here previously. I got the first two ounces of breastmilk into him and he seemed to perk up a lot. I have thought all day about how fitting it seems that his first meal be my milk especially since his first poop was like merconium. It feels like symbolism of a new life in a way. I hope this is God's way of showing me the future.
He tolerated the food fine. His stomach has shrunk a lot. He hasn't asked to eat at all yet. I even ate lunch in front of him once he was okay to eat and he did not even care.
The Pain team ordered oral morphine for him and stopped the drip this afternoon. He got the first dose after I fed him at 3pm. At 4:30 I loaded up a reluctant Pooper into a wagon and headed off to the playroom. When he saw all the toys, he was eager to get out and play. But the morphine made him stagger like a drunk so I had to help him balance the whole time. At one point, he did that familliar "puke" cough and I looked into the wagon to see what I had to sop up puke. He turned white, broke into a sweat and was very upset but did not puke thankfully because I had nothing to catch it. We loaded up in the wagon and headed out to the hallways and outdoors a bit. He looked sleepy so I soon came back up and put him into the tub. He was not impressed but I really wanted to soak his butt. He actually layed down in the tub on his back. Why, I don't know but he was not impressed with that position once he did it. The tub was short lived but I was happy to see he did not cry in pain when his butt hit the water. His poop changed over to breastmilk poop by the time we went to the tub and I could see his but getting a bit irritated.
After I got him out and dressed, we again wandered the halls for a bit and then returned. He has only had about an hour nap today and REALLY needs to go to bed. Only he doesn't know it.
His next oral dose of morphine was given about 8pm and he promptly puked it up. I asked them to just give Torradol and hold the oral and see what happens. We still have IV if necessary. I figure his tummy cannot handle it when it has only barely been used. I just fed him a few more oz of my milk so total today he has had six. I am crossing my fingers it stays put. It is nice to finally be making progress.
Samuel's butt still looks pretty good. I think everyone expected it to be worse by now. I started using the coconut oil and Lansinoh combo rather than what they gave me and suddenly I am not waxing his butt anymore with each diaper change. He likes this better and it is the best barrier I have found yet. I guess the looseness of his anus is the "uncontrollable" they were talking about. No one is sure how long this will be that way. He literally just poops nonstop and in order to keep the bum from getting annoyed, I am just constantly changing diapers. I will be glad to get home and go back to my own cloth stash. The lining diapers with hemp scraps works rather well in a pinch and I have found that the scraps are great throw away wipes that can easily be used dry and not irritate if the barrier on his butt is good enough. I am looking forward to starting more of his regular diet to see how he reacts to a firmer poop. I think it will help a lot in keeping the area looking well. Nighttime is driving me crazy because I don't want him siting in poop and I will probably have to rework my night feeding schedule to more of a day one for awhile until we see how he adapts.
My attitude has improved as Samuel has. I was thinking amongst the clutter of things in my mind right now, that the most important thing is that he is okay and happy. Everything else is second. And of course, little A.D. She is a sad girl. We really want to go home. Good old Esther has been working on our discharge papers already. Does she know us or what?
8/17/05
Yesterday was a long day for us. At 3am I had the RT come suction Samuel's nose again since it was effective the day before. Well, it effectively ruined the morning since he was afraid that everyone who came in was going to suction his nose. He was pretty much unreasonable and inconsolable all day. It was really hard to figure out why exactly. He would say he hurt but not indicate where. He would also hold his arm over his forehead like he used to do when his hydrocephalus came on. We backed the morphine down to 30 yesterday and we are all kind of thinking that we have backed it down enough that he is feeling some pain now again. Note that the usual and customary dose for patients just returning from surgery is 30. So I don't know what we will do about that today. We had planned with the Pain Team to turn it down to 15 and then off by nighttime but that did not happen.
NG suction was not turned off yesterday as hoped. Samuel was still having lots of dark liquid coming out and they wanted to be cautious. He has not eaten since noon on Thursday of last week. He has stopped asking to eat as well. I don't eat in front of him because I don't want him to ask or remember so my mealtimes are during his naptimes. He doesn't begrudge me coffee which is nice so I can usually make it until his afternoon nap at 1-2pm or so. Then he will remain up until 10pm or so and after yesterday, I just went to bed without dinner because it was too late, and I was just too tired. I did not leave this room yesterday other than to get coffee downstairs and to grab something from the fridge. It was a very long lonely day here. It is incredibly hard to focus on any task for long when Samuel is feeling poorly. Mark asked what he could bring me today to do, but I just cannot thing of anything that I would do.
We did get rid of the oxygen yesterday. Samuel is back to room air. I removed the cannula last night and he had a huge fit about that since it was taped to his face rather well. It has left some broken out skin behind on one cheek, which is annoying. I am sure he feels better without it though.
Our morning yesterday was rather uneventful after the docs rounded and told us that they were just going to sit tight. TPN was again vetoed in the hopes that today he will be eating.
Samuel was never able to fully get comfortable or get to sleep yesterday. I was starting to suspect morphine let down issues. The only thing that really helped with that was Tylenol. Other than that, in my medicine cabinet, Tylenol has no place because it doesn't help any of the kids much. But after trying everything else, we were able to turn off the suction long enough to let Tylenol go through and he did finally get better. Hmm. That tells me that the morphine is already a problem. Just what I was trying to avoid. The Pain team says it takes 10 days to become addicted, but when you have had a previous addiction, it can happen sooner. Your body just craves it. Samuel was just in a "let down" state all day yesterday.
At 1pm, I was determined to get him down for a nap. I asked Esther to bring him some benedryl to see if knocking him out and letting him get some rest would improve his attitude. It barely touched him. He dosed in a tormented fashion twitching and moaning and crying regularly. And then, for the amount of quiet we had in the morning, we had that many visitors in the afternoon. It seemed like every few minutes someone was knocking on the door and coming in. First the NP for general surgery came in. I had requested her presence but it was really annoying to Samuel. The day before that, they came and did the TV, the couch, all the docs came in and nothing ever disturbed him. But yesterday, everything annoyed him and woke him up. After the NP, the dietitian for General Surgery came in. After I went over with her everything that is part of Samuel's diet, I asked HER if she had any questions. Not even sure WHY I received this visit but it was a bit annoying. Then someone came in who was "testing" the alarms on the monitors and set them all off and woke up Samuel for the umpteenth time. This person left and then I hear more knocking on the door and it is the cleaning lady who asks if she can come in. I told her, "you may as well, everyone else has." Then I spy Esther walking by and tell her that we need to have a heart to heart RIGHT NOW! I was not impressed by this point and asked her why the hell all these people need to come in NOW. I guess she was at lunch and did not know but when I told her about all the visits she was with me wondering why all these people needed to come at all. We ended up getting Samuel a bolus of morphine to see if that would do the trick and get him some uninterrupted sleep and she made a sign for the door that no one was to enter without consulting her first. I just love the signs that have been made for Samuel and always keep them. Well, the morphine did the trick for awhile and everyone stayed out for two and a half hours. He did rest but woke up tormented again and that was when we got Tylenol.
I have to say how impressed I am with Esther. She is only 22 years old so had to be pretty new to nursing last year when we got her but she is just an awesome RN. Great common sense and a great memory of past events. I would have liked to have Julie yesterday since she won't be back until the weekend and I would really like to be home by then, but Esther ROCKS.
After Samuel's Tylenol, he perked up quite a lot and started playing with his toys. I did not notice he wasn't playing until he started and then I realized he had not played all day. He even played with Esther who he had been rude to all morning. He was pretty awful to me too so everyone was a target. He even said Esther's name for the first time yesterday. It was cute, she thought it sounded like "Ethel" so of course, I had to run with that and yell Ethel at her whenever it might be embarrassing. She was not embarrassed though. Got to take the fun when you can get it.
Samuel pooped all day yesterday. ALL day. And still merconium. I am just amazed by this. Like a new baby. So of course his first meal with be breastmilk! His butt is looking okay so far but the poop is just sticking to everything it touches despite the amount of oil and paste I coat his skin with. I am literally picking it off his skin. It is like rubber cement really. I am hoping that when he is allowed to eat, this will improve. He has absolutely NO sensation of pooping. He doesn't know he went. It continues to just seep out. There is no muscle control and I don't know if they expect this and it will come back over time or what. Maybe that is what they mean by uncontrollable. Right now it is not a problem, but if we are talking about diarrhea, then it will be a major issue because it is just leaking like a drippy faucet right now.
He still has the catheter which is now making his penis sore so I am going to see if we can pull it today. He is awake and alert enough to pee on his own and I am worried about the infection risk now. He tried to pull it out on his own yesterday. This needs to disappear today.
He had less of an output via NG overnight so I am hoping that they will turn it off and allow him to be fed. If they say no, I will simply demand that they do anyway as he is pooping and has always had some issues with being NPO and not having an empty stomach. He is not even asking for food or drink which bothers me. I mean, it is nice that he is not crying and hungry, but at the same time, I feel like he is starving and might feel a whole lot better on his regular diet. He might perk up a lot.
Samuel was up at 4am this morning crying and saying he hurt. I ask where he hurts and he just points to himself and says "Me". So I guess that means everything.
It is raining here today and just looks blah outside. I love it. Matches my mood.
The Surgery Team just came though and said they will turn the NG off today and yank it at 2pm assuming it does not fill up though the day. The catheter is going away and the morphine will go off. That should take care of all the remaining tubes and also allow him to get off the monitors. He will be able to start clears at 2pm assuming everything goes well. I have also requested a shallow bath to soak his butt. He hasn't bathed in almost a week now and it is getting harder to clean him. After that, we should be free to roam the hospital which will be nice after being stuck here all day yesterday. Samuel will hopefully start feeling better. I am not sure how the morphine thing will go but cross my fingers that the distraction factor will help. Hopefully we can get out and have something fun like a fire drill happen so I can take him out to see the fire trucks come in again. Oh the joys.
I tried to pin them down on a release date. I was going to have Mark come in today but if we might go tomorrow, I did not want him to waste the time or gas. If all goes well and he is eating and feeling well tomorrow, we might possibly go home. That would be nice. This place is driving me nuts.
I took an inventory on how many clean clothes we have, and if there was anything I really needed Mark to bring in today and I am fine so I called him and told him to just bag coming in today. If he can come tomorrow or even the next day to pick us up, that will be fine. I would like to see him and the kids. A.D. is now having a rough time and crying herself to sleep at night despite everything Mark tries to do to console her. It just sucks. But between the gas prices and the time it takes to come in, it is not worth it. If we can get out of this room today, that will help my mentality a lot. You just cannot come here, go through all of what we have been though and not have some emotional toll to pay.
Mark and I talked about what we need to do when we get home. There is just no rest for the weary. I was hoping to have a few days to settle in and get the kids back on track with school but no such luck. I will be needing to get back to work immediately. I hope that things will become more normal around the house now that Samuel is hooked up so that Mark can get a job and share the financial burden a bit more than he does now. Some guaranteed income will be nice. Esther asked where his job is. He has no place to return to at this point so I don't know what he will do. He cannot be too far away from home and that doesn't leave us a lot of options as we live in a small town. I know God has it all under control but I cannot help but worry about how much more I can handle. At some point, you reach the breaking point where things have to change and I have been there for awhile. But we just could not do anything about it. Yesterday was one of those reality setting in days where up until then, you thought everything was okay, under control, and then you realized that it wasn't and wonder if it will ever be okay again. We get out from under one burden only to find another. One day at a time, I guess. All I can do is the best I can. I usually try to leave this out of my updates but it is pretty prominent in my mind right now. The sad thing is that our stay here is a crappy vacation and I needed a vacation but this wasn't what I had in mind. Things at home just seem to run on auto pilot. I do what I need to do for that moment and don''t really think to far into the future. From where I sit this morning, it looks like there will not be any end in sight to the amount of things I need to do in a day to keep us going. The hospital and lots of time alone with your mind does seem to play tricks on you and it has really gotten me as I sit here this morning. We haven't even seen or know what is to come with Samuel's butt and eating yet. I am still holding my breath there but glad that I was at least able to make quite a few extra diapers a few weeks back since we will definitely be going through quite a few daily. I have been changing them every hour and there is always poop in them. And this is before eating anything. So I can only imagine what it will be like later today.
Well, I must change a diaper which is now a ten minute job and resembles getting your butt waxed since the poop just sticks to everything and has to be pried off. Hopefully a bit of food will help that problem.
Thanks for your prayers and notes of encouragement. Samuel received a card from Kristen M and Vicki P yesterday. Thank you both. He likes to get mail, but then, who doesn't? Much love.
8/15/05
Quite the eventful day today.
We both got some good rest last night again but 6am seems to be the magic time to get up. As soon as Samuel woke up, his oxygen sats dropped enough to constantly alarm. Unlike our former hospital where you could alarm for hours without anyone noticing, they walk in here almost immediately so our RN was kept quite busy for the last hour of her shift. She called the Surgery Resident who ordered a stat X-ray since they had then turned him up to 2.5 liters and it still wasn't helping much.
The Surgery Team rounded and we talked about the breathing issue and I used one of Monika's quotes and thought of her as I did so...."I am not a doctor, but I think if we can get this fluid off his gut, the wet lungs will follow." They agreed but wanted to see the X-ray anyway. A bit later the charge nurse was in to discuss the issue with me and she asked me if I was concerned. I told her I was not and explained that I have seen the worst of the worst. We have done pneumonia and we have had both lungs collapse, and the signs of trouble just are not there. Samuel's vital signs have all returned to his normal baseline. No more fevers. RT was then called to listen and I told them I thought his nose was clogged. She suctioned it and sure enough, the alarms stopped and the attention we were getting also did. He is down to a half a liter now. I hope to see it go away tomorrow. The X-ray did show some issues with the bottom left lung that they thought was either pneumonia or a collapse, but no one was really overly concerned at this point. I guess it is a good thing that we went though some awful things last year or else I would have freaked out since they apparently were. Well, better safe then sorry I guess! Certainly we have been sorry more times than I want to count.
I received a lovely bag of goodies for ME today from Serena H. Oh, can I just say that that was so awesome and perfect choices. Thank you so much. Not only was is a huge lift to my day but you have introduced me to a place which delivers quality food here. Thank you for caring! I felt a little special, okay a lot special to get something that was specifically for me! God bless you!
Later another package arrived from Kristen M, a very familiar name now. Samuel got some really cool things to do that he loves. And thank you for the lovely note to me. I got that latte today at 4pm. Your thoughtfulness is so appreciated and your continued care for our family does not go unnoticed. Thank you and God bless you.
The pain team was in and I asked them to begin the taper for the morphine and do it as quickly as we can. We went from 65mcgs to 50 and did fine. We are now to 40. Samuel has really woken up today and had truly a great day here....or as good as it can be if you are stuck in a bed with a tube out of every orifice. He got to ride in the wagon again and his weight remains the same. I hope he starts peeing it off soon. I took him outside for some air and he thought it was hot and then asked to go home. His spirit remains good.
Our TV was replaced with a new non-pink one. The person came in with a remote and tried to fix the colors that way, and thought it was acceptable. He asked me if I thought it was better and I asked him if HE would want to watch it like that. Obviously not. So it was swapped. We also got a new couch bed since the one in here was broke. It opened fine but then fell apart when I tried to close it. I also had them fix the one in our former room since it was on the verge of the same problem. I feel happy that I have improved the rooms for the next people who visit anyway. Still cannot believe no one complained about the TV.
We had Connie as an RN today. She usually works nights so it was a treat to get her in the day. Unfortunately, or fortunately, depending on how you look at it, I had the opportunity to get to know her in the night shift because several of the nights with her were bad ones for Samuel, meaning I was up all night. We had a good time chatting about the past, present and future today. My night RN for the past few nights was Jen who is new to us, but awesome. She is not here tonight but will be back tomorrow night. Tonight we have an RN whom I remember but did not grow on me if you get my drift. Julie and Esther are both here tomorrow. Hmm, do I get both? Or do they flip a coin? I have had Esther for three days and Julie for one so I guess if all is fair...... Being here on the good days has felt like a family reunion of sorts.
Samuel got some real clay today from the Playroom! That has been a real treat and it is not all over his bed! We have been making animals with it. The volunteers also brought him some videos which was nice. I walked down there but it took forever to find things when you have to look at each one two inches in front of your face to read it. Much easier to have someone else do it.
Our Oncology Social Worker came to visit. I guess he stopped by Friday but we were still in recovery. He wanted to know how it was all going and if we were being treated well on this trip. I guess my last stint here has really left an impression with him. I reminded him that we are with the Surgery Service and Oncology is completely out of the picture so it has been nothing less than great as far as the people go. Certain nights have sucked but that was expected...mostly. The gut clean out night was a new all time low in it's own way though. So we talked a bit about things past and present. This has certainly been a trip about reminiscing. Samuel's determined spirit has really shined this trip. He is so remarkable.
Not too long after that, the Surgeon stopped in and asked how it was going. I told him we had not progressed beyond the surgery. Every tube remains the same and the NG suction is still going. TPN was vetoed today in hopes of progress tomorrow. He told me that when Samuel started pooping, it would be really evident since there was not much left between small bowel and anus. Our Onc came in about that time and got the OP report from the surgeon. As far as the surgeon is concerned, Samuel is still right on track. He did tell our Onc that Samuel's rectum looked better than he has seen it and that the only problem will be the last inch or so of the canal and the outer tissue.
We have been dressing Samuel's butt in anticipation of poop. It has felt like the calm before the storm in a lot of ways. I figured I would never be able to afford to bring the natural diapers for this trip if he was going to be pooping every ten minutes so I am using the hospital's yucky ones but lining them in hemp fleece scraps that I would normally throw away. They are perfect but I am sure people wonder what this big bag of garbage is for. I also made wipes, brought the wipe warmer and my new solution concoction to try out. So we are ready! I guess. The NG is still dragging out brown mucus water that everyone is enjoying trying to guess what is in it. Connie asked me if I had fed him. He has not eaten anything unless he ate play doh.
Well, about 5pm Connie comes in and wants to check his diaper to be sure he hasn't pooped yet and that I have enough paste on his butt. I figured there was nothing there because surely he would let us know. Imagine my surprise to find POOP!!!!!!!!
