Friday, August 31, 2007

Day 3: NPO again, More tests and New Meds

We woke this morning to the news that John was NPO again, ugh, and just as the most delicious looking breakfast arrived. We will certainly be ordering that one again in the morning. John had two tests today, a Mag test - I'm sure that's not the proper name but it's a nuclear medicine test where they determine the amount of function that each kidney has. Fortunately he got to sleep through this, well it's not really a painful test, but it did take them nearly an hour to cath him, he's difficult to cath but when the urology guy walks in and does it immediately it sure makes it look easy. For the test you have to lay perfectly still for 40 minutes and he certainly isn't going to do that unless sedated. At the end of the test they decided that they wanted to empty his bladder to take a few more pictures and so they pulled 800ml of urine out of his bladder, that's about 3 1/3 cups, that's a huge bladder capacity and why there has been discussion in the past about doing surgery to make it smaller. The other test that they did was a VCUG, in part to confirm that John has prune belly syndrome instead of other things that can masquerade as that, he does, in part to see how things were shaped, functioning, etc. So with this new info urology is working up a plan for John and we should know what that is sometime early next week, maybe tomorrow, but really with it being a holiday weekend I'm more expecting news on Tuesday.

John's day has been long and rather uneventful, well at least he never knew whether it was eventful or not because he was knocked out by 1pm and didn't wake up again until 8pm. Now of course he is sitting in bed eating ice, drinking Diet Coke and eating Rice Krispies and Cheerios, our new nighttime routine.

He is on some new meds today, an interesting combination that we've not seen all of before. Through his IV he is receiving fluconozal in hopes to keep away any yeast infections on his new central line, the plan is to give him a dose of this weekly. He's also receiving another antibiotic for this same reason, Zosyn, that I'm barely holding onto the name for, but it looks like a really cool drug that is effective against both gram positive and gram negative bacteria, and that's pretty important in a little guy who has a gut full of bacteria that have proven themselves able to cross the gut wall and infect a central line on numerous occasions before. I don't ever remember him getting gentamyicin orally, he's had tons of it through IV's before, but now they have canceled his other antibiotics for bacterial overgrowth and switched him to this one.

For the moment the GI plan is still formulating, there are two more tests to be done next week and then they will be able to tell us what they have in mind. We already have a hint of the possible future from a conversation with the nurse coordinator today who was telling me that his big dilated small intestine is good news because it means that he's a prime candidate for bowel lengthening and tapering procedures. She also told me that poor stomach peristalsis is pretty normal for kids that are born with a gastroschsis.

We got to meet the coordinator for Option Care, the new home health company that we will be using. A very nice man with little kids of his own, he was able to answer lots of questions about pumps and supplies and such and is sure to be a great help to us when John goes outpatient in the future.

We are eagerly looking forward to meeting Pastor Wilken tomorrow, he is a local retired pastor here who is coming to visit and bring the Lord's Supper, a much needed strengthener of heart and soul. I never realized how isolated a shut-in feels until becoming one with John, seeing it from this perspective I can say without reservation that a visit from a faithful pastor bringing God's Word and sacrament is more valuable than any thing else received during these times. I always think back to our first meeting with Pastor Brad Drew in New Orleans, when he reminded us that we were not only in the hospital for our son, but that as Christians we were also here for the aid and comfort of others, a faithful pastor is worth more than gold or silver any day.

Thanks again for everyone's prayers, support, emails and offers to lend a hand, it makes the prospect of months on end here seem doable.

Thursday, August 30, 2007

Day 2: Broviac, Bye to Dad and Late Night Cereal

We were worried last night that things this morning would go very slowly and John would be NPO for hours on end while waiting on the surgery schedule to accommodate him. Thankfully that wasn't the case. As soon as he was awake we were headed down to have doppler studies done on his veins to find a place for the line and by the time the studies were done the OR tech was there to take us to pre-op. Ever his charming self John made lots of new friends in the pre-op and came out with a new teddy bear friend too.

John's broviac central line (plastic catheter inserted into heart, comes out through chest wall to hook up with IV nutrition) went in without any problems, and then the scope that was done showed that his stomach doesn't clear it's contents very well. I guess we sorta kinda knew that but still, it was rather interesting to see the pictures. Although his intestines are rather dilated it didn't appear to the GI doc that there were any other issues, like ulcers or such. Of course since John had been knocked out and had stuff run down his throat he woke up crabby and with a sore throat, go figure.

We had to say good-bye to dad in the OR recovery room and then headed back to John's room to cuddle and read books for the rest of the afternoon. He did play nicely with the physical therapist for a bit and was a real sweety to the nurses when they brought him medicine, which he thinks is a treat. He managed to eat a few bites of supper and is at this time sitting next to me, eating cereal, a bit of Rice Krispies and a bit of Cheerios.

I got a few minutes to talk to the nurse coordinator today about feeds, tpn, lipids - whether we were going to be doing the old Omega 6 lipids that are so terribly hard on little livers or the new Omega 3 lipids that aren't, and before it was over we ended up making each other cry. We came to the same place, that we are both scared and worried about this line and realizing that it really is the only option right now because John is in her words "wasting away before our very eyes." As silly as it sounds, and maybe just as female as it sounds, it makes me a bit less scared to know that they are scared of this step too, somehow it makes me even more aware that we have made the right decision. In the end she decided to run tpn tonight and address lipids again tomorrow, we'll see what the day brings.

The child development specialist came by today and visited while John was sleeping in my lap, and then later stopped in for a moment when he was awake. She was impressed with all that I told her John could do, but when she came back she kind of tested him and then she was way impressed that he was so quick and fast to learn things. Another fan! She was also telling me about the therapy services that are available once John becomes an outpatient, and it sounds like we have a few choices, outpatient clinics here, a pediatric rehab type establishment that covers all of it, and registering John with the Omaha public schools and letting them run the show. We've not decided what we are going to do, for now it's not an issue and the lady is going to get us more info on each option. When it comes down too it, we may very well opt for a lot of playing, reading books, going to the zoo and just being a kid for this year. With living in Ronald MacDonald House, frequent hospitalizations and only getting to see dad every other week that is a lot to deal with.

Tomorrow is yet another day of testing, a VCUG and mag test, both kidney tests to find out how much kidney function he has and how much reflux he has in his ureters. Last night they did a cath test where they cathed John to find out how much urine was left in his bladder after he wet his diaper, and granted it was probably a half hour or maybe a little longer between him actively wetting his diaper and them coming to cath him but still 400ml seems like a lot. The urologists are waiting for the results of these further tests and then are formulating a plan.

The weekend should be rather quiet, and uneventful. For the moment they are running stool studies to rule out any infectious junk so John is on isolation and not allowed out of his room. This will not be fun when he is up and feeling good and ready to run tomorrow, but hopefully they will get the tests done quickly and either treat a real problem or let the kid run. Of course that means that I have to figure out how to keep up with him with an IV pole, if nothing else it will be cheap entertainment for all onlookers :)

Thanks again for your prayers and support, the emails, phone calls and getting to chat online and such are a real sanity saver for us. For the moment we are specifically praying that God will keep this little plastic catheter in John's heart clean and him infection free until he is big enough to have it pulled out, but as always we pray Thy will be done and commend our precious boy into Christ's loving hands.

Wednesday, August 29, 2007

Omaha 1: Meeting the Team

Today has been a long day of testing and meeting people, a good day and one that makes us even more sure that this was the correct step to take.

First thing today we started in with x-rays, and then starting to meet the people who make up the team of medical professionals who are going to be taking care of John. The nurse coordinator came by and gave us an overview of the program. The GI doc told us that what he sees in the growth curve is that John's current shortness is a nutrition issue. The surgeon came to let us know that while they are putting in a broviac central line tomorrow that they aggressively look for infection and at this point that the thought of the team is that the weight loss/malnutrition that is currently going on is more life threatening to him that the possibility of a line infection despite his history of line troubles. The other thing that they are going to do while he is sedated tomorrow is scope him, basically put a scope down his throat into his stomach and small bowel during which they will get a sample of the contents of his small intestine and then be able to determine what is growing in there. That gives them the info for two things, one to know what bugs could be crossing the gut wall and aiming for the central line and the other is to make sure that his bacterial overgrowth is being treated with the proper drug rotation. John had several ultrasounds done today and also a meeting with the urology team and will be scheduled for more testing to determine whether he needs to have surgery done to manage his reflux.

It's nice to see them taking a very global approach. They told us today that liver damage from TPN can be lessened by getting at least half of his total calories through his gut. So while they are placing a line there is also an aggressive feeding program going on too. John is doing his part, eating, eating, eating. They are also going to be looking at probiotic therapy and dietary education for the parents. At the moment John is on a basic lactose free, diabetic diet, now that is something to get used to especially for the ice cream lovers in our family, ah that would be all of us.

So for the night we are settling in well, dad is staying tonight and through the line placement tomorrow and then he is headed back home.

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He will be back next week in time to help John and I move from the hospital to the Ronald McDonald House, dad toured it today and said it seems to be a good match for us and a nice walk from here to there. John is NPO at midnight tonight in anticipation of surgery tomorrow so we are ordering food for him at 9:30p and getting him up to eat, drink and be merry until midnight, then hopefully letting him sleep in as long as possible in the morning. Tonight I am staying in the Nebraska house, the hotel that is attached to the hospital for the long-term patients families, for one last night of restful sleep before dad goes home.

Tuesday, August 28, 2007

We're here!

We arrived at the hospital a couple hours ago, have managed to get lost once already and now we're waiting in the room for the docs to come start the process and for the Chinese food delivery guys to get supper here, honestly I'm not sure which is more eagerly anticipated at the moment.

John made the trip well, he's been eating like a little piggy all the way here, first we had to stop at Culver's for lunch on the way out of town, John ate a good bit of Mark's hamburger and then proceeded to devour the onion rings and french fries. After that he took a nice long nap and then as soon as he was awake was telling me that we needed to go for food. We did our best to ignore him for a few minutes, but then relented and got him another hamburger and fries from Wendy's. Hmmmm, there's nothing like junk food on the road, but he ate half of that hamburger and totally snubbed the fries. Silly kid! Since getting here he's already eaten a box of cereal, and then sent dad for ice.

Accommodations, well for tonight they are shutting off this room and letting dad stay here with us, dad is going home tomorrow and we are going to figure out where to take showers, do laundry and all that junk before he goes. This hospital is enormous, Barnes Jewish enormous and it's a bit intimidating at the moment, but I'm sure by the end of the week John will have run a good number of the halls and we'll be well known by everyone.

I have internet access here, but so far I haven't been able to figure out how to send email, so I wanted to say thanks here to all the wonderful homeschooling parents on the Loopers list who are praying for us and who sent us names of Pastors to contact in the area. I'm still reading list emails, just can't send. Somehow this gives me an even clearer picture of how frustrating it is for John who can understand everything we say and yet has a hard time communicating his own thoughts.

Ah yes the food has arrived, I'll update more as I have news, thanks again for all the prayers!

Monday, August 27, 2007

Exciting News...

...okay and a little scary too, but the excitement is overwhelming.

John has been accepted into the Bowel Rehab Program, medicaid is on board, and we will be taking him from Columbia to Omaha, NE tomorrow. He will undergo a lot of testing and consultations and then treatment and could be there from 3 months to a year, that part is a bit scary but getting to see him put on weight and grow will be amazing to watch. He's such a smart little guy now, I can't wait to see how he does with full nutrition on board.

I was very specific to tell these docs that John has prune belly syndrome too, and was thrilled to tears to hear that they have another little patient, a 5 year old boy who also has both short gut and prune belly and though he had a rough go of it for a while he is doing excellently and is heading off to school this year. It's so good to hear that John's not alone, that there is another kid and he's doing great.

We are excited, thrilled, and can't wait to see what God has in store for John in Omaha. Thank you for your continued prayers, and we'll update as often as we are able.

.27 52.5 80% Still going, but might be home

Dad stayed with John last night and he just called to let me know how rounds went this morning. Everyone is thrilled with how John is doing today and actually talking about maybe sending him home tomorrow, but still consulting with Omaha, just maybe not doing a hospital-to-hospital transfer, we'll know more about that later today or so when we hear back from Omaha.

First off, fun kids stuff. John was feeling so much better yesterday. He was ready to walk, run and play. Since the place is pretty quiet on Sunday's he and I walked the halls of the medical school. He was fascinated with the safety showers in the halls on the 7th floor. He likes to run to them and stand under them and tell me that they are a shower. He is also quite thrilled with the big ramp that goes from the 7th floor medical school to the new burn unit. He needs help stopping on the first ramp, of course it doesn't help that he is running as fast as he can down it, but I'm sure if we didn't grab the gait trainer to stop him he'd at least make a dent in the wall, but in my minds eye I see him sailing over the parking lot and giggling all the way. The second ramp has more space at the end and he can bring himself to a stop before he runs into anything. Always he turns and with a smile holds out his hands to go back up the ramp, it's a steep and kinda slick one so he can't quite make it on his own. We explored lots of halls yesterday and at one point on the 2nd floor found this huge atrium that connects the medical school to the library and has doors to the outside, it was too hot to go outside yesterday so we just wandered some more. When we got back to the floor I thought he'd be done, but the feeling better kid ran right into the play room and told me 'ride' and pointed to the wagon. Ah yes, since getting to ride in a wagon the last time we were at SLCH he is fascinated. So I told him to go and park in his room and I'd bring the wagon. We explored even more floors at at one point passing all the radiology people, some of whom we know from previous visits to that floor, the one guy rolled out into the hall for a high five before we passed, he got a really big smile from the wagon riding munchkin!

Later when dad came it was time to show him the cool ramp, safety showers and then since it was cooler the atrium and outside we went. John was amazed. This door opens onto the university campus near the volleyball sand pit thingy and some big green field with lots of markings and a track around it. We walked and watched the hordes of college kids playing volleyball and lacrosse, and a bunch of things I never understood but all of it was fascinating to John. He was really thrilled with the kids that zoomed past him on their bikes and the gaggles of girls that stopped to talk to him.

So what's those numbers. Well the first one is the smell of triumph. John's weight today is .27 Kilos higher than he was yesterday, that is the very first weight gain that seems to actually be John and not either fluid from lots of IV's or poo that's hanging out and won't leave. .27 Kilos is 9.5 ounces, of course weight gain, much like weight loss is going to have to be calculated on some kind of sliding average to get a real picture of what is going on, but today we are celebrating over these few ounces because they are his first in a very long time.

52.5, that's the rate that his formula needs to be pumped at over a 24 hour period to have him at 100 cal/kilo at a weight of 10 kilos. The medical math is fun and interesting, well at least to me. John weighs 9.04 kilos today, but since he desperately needs to be at least at 10, we are calculating everything nutritional based on that. So he needs 1000 calories a day, since we can't count on his intestinal tracts absorption rate, we are only counting his formula/g-tube intake and not the 300-400 calories a day that he is taking in cereal, potato chips and such.

80% is the strength that his formula can be mixed, funny thing about John his gut has not ever really handled full strength formula from the beginning, one of the Docs at St. Louis Children's explained the chemistry to me a long time ago, something to do with osmolality (this could so be spelled wrong) and such that if I remember right boiled down to his gut needed more water to digest things than normal. Add that to the kidneys that don't concentrate fluids normally and John is left with an extraordinarily high water need, which probably explains why despite all the fluids that they are giving him he still wants more water to drink.

The advice that we got a couple days ago seemed a little well strange to our ears. Not only to skip all simple sugar and lactose, okay these didn't sound so strange but we were amazed to know that even if they didn't throw him into immediate diarrhea that they would rob him of calories and make him not gain weight. The advice that sounded strange to our ears and to which I will admit we were more than just a little skeptical was the use of Miralax. Short gut kids as a rule never deal with constipation, never, prune belly kids constantly deal with constipation, always, John has the best or worse of both worlds he deals with it periodically. So after many hospitalizations that looked like serious obstruction issues and such, we finally all admitted that yep, the short gut kid has prune belly issues too. After many attempts at suppositories, which the child hates go figure, and other laxative disasters Mark and I switched to home remedies, apple juice, a bit of syrup, etc. Granted these kept the constipation away for the most part, but in the end it was a contributor to the lack of weight gain and the more we let him have of it, the more I'm sure that it was a contributor to the weight loss. It really sucks as a parent to have to admit that we were part of the problem, I suppose that is not just with special needs kids/parents though. Anyway so the advice was to pull John off all simple sugar, no juice, soda, hard candy, syrup, etc., but that things like Frosted Flakes and Cocoa Puffs in moderation were okayish and treat his periodic constipation with Miralax. Since having the pharmacy sub that for one of his other meds a long time ago we were pretty gun shy of this idea, but last night it was time that it needed to be tried and so we held our breath and had the docs try it, after all he still had an IV in his arm and if needed they could get him fluids quick. The docs were right again, and we are sold, the next trip to Wally will be for Miralax!

John not being able to have juice and such is not being easy though, we tried Diet Sierra Mist, it causes the same problems as sugar, we tried Diet Pepsi, he's not impressed, I gave him some Diet Coke yesterday and he did okay with it, of course it was watered down, but we'll see. We have turned him into a little juice addict and now we'll have to break that monkey off his back. We're hoping that he will go with some substitutes of real fruit where juice formally lived, and believe me dad and mom are going to have to find a way to enjoy that too. Somehow though I'm sure that it will be better for all of us in the end, and after all if John is gaining weight Mark and I would do anything!

Friday, August 24, 2007

Blessings come in all shapes and sizes...

...and sometimes they even come disguised as setbacks, mistakes and bad news. As parents we have learned to wait and see, holding on to God's promises for John and us and enjoying each moment that we have be it at home or hospital.

The latest setback has been the PICC line, despite having had one in the past they were unable to place one this time. No fault of docs, just that John's little veins said 'enough' and clenched down and would not let them place the catheter. A nutritional set back to be sure as everyone was on board to start running TPN immediately, which would have given John some much needed calories and nutrients. But as in all things God works in ways that are mysterious and little understood by man and here we see yet again His hand at work.

Since there is no PICC line placed and John is such a difficult kid to get an IV in it seemed rather tragic when his little foot IV went bad, our favorite IV nurse wasn't on shift, and yet again miracles for John, the new IV nurse came in and with one stick we have a good IV that is so far holding up well. But since it is a peripheral IV and TPN is very hard on those they aren't giving him the TPN right now and are trying to use his gut to get him the calories and nutrition needed. This is going so so.

Actually it's going about as good as it did at home and the poor docs are running themselves and the nurses crazy changing the concentration of his formula and such every 4 hours trying to keep him balanced. Right now he is getting an IV bolus to catch up again, but all in all John is faring pretty well during all of this and spending a large amount of his time wandering the halls and touching peoples hearts. It's always amazing to me, with all the patients that the docs and nurses care for, that John is so well loved and remembered by nearly all who have spent time with him.

So far, this isn't sounding like such good news, we are in here indefinitely until John is able to tolerate feeds that can sustain him and let him grow, we are no where near that goal, actually at this moment that particular goal is not even glimmering on the horizon. But as with all things that are in God's hands here comes the good news, this has led the docs here to speak with the GI doc here and those in St. Louis and to recommend that we seek a 2nd opinion and maybe even a transfer to the Intestinal Rehab center in Omaha, Nebraska. We will be talking to those people on Monday and seeing what they have to say, but reading through their literature John is definitely a candidate for their program.

Meeting the GI doc here in Columbia, was a blessing in many ways, not the least of which is this recommendation for Omaha, but also heartening news of a little boy with half the amount of short-bowel that John has that is doing well thanks to the expertise of the Omaha treatment center. Actually this doc is thinking that John is a good candidate for two different types of bowel lengthining surgeries and holds out great hope for his future. No matter how much hope we hold ourselves it is always nice to hear that the medical professionals are hopeful too.

That brings me to the next thing that I wanted to say. I know that there are staff from Children's St. Louis that read this blog, and I want to say to them thank you, the docs and nurses and staff from SLCH are the first medical people that we talked to who held out hope for our little guy, who told us things like 'there is no reason he shouldn't make it into hood' and they have been supportive, kind, caring and knowledgable professionals to the nth degree, an invaluable resource in getting as far as we have. Going to Omaha for this 2nd opinion and possibly for treatment in no way shines a negative light on any of the medical professionals that we know and love, just sometimes it's time to take a further step, and this seems like the right time and the right step to take.

We have been teasing John that he will now get movie contracts as he is going to be going into Rehab, lol, I don't know that it works the same way for Intestinal Rehab as it does for rehab, but oh well. All in all we are all holding up well, learning to live in the hospital again is a bit of a stretch, but we're managing to do it and still have fun and play and such through the day, and I'm sure that in the end John will be glad to get back home but will be looking for where all the cool places to walk went too and all the cool grown ups to play with!

Thanks again for your prayers, they are much needed as we make big decisions on where to go and what to do for John, always we are motivated to do what is the very best for him, and thankful that God has given us so many excellent medical professionals to show us the options and reasons and ways to go. Please continue to pray for us, and for them, lol, they have a big job to do putting up with us 24/7.

Tuesday, August 21, 2007

Eating and playing

It's almost time for me to leave and go back to the hospital, but I wanted to let everyone know that John was doing really well today and it sounds like the plans of how to help him get back to the important business of growing is coming together. For now we know that they are planning to put in a PICC line tomorrow and hook up TPN through his peripheral IV tonight. I could hear him chattering and playing when I was on the phone with Mark earlier and that he had been eating and feeling good. Thanks again for your prayers, I'll update again as soon as I am able.

Monday, August 20, 2007

Big Tigers and Steps Back

We took John back to the hospital on Saturday night, thankfully we made it to the Saturday evening worship service, we both really needed that, but then later that night he started throwing up and so we had to take him back to Columbia. He spent most of Sunday looking a little better but then started really going downhill Sunday evening and by this morning he had a bicarb of 7, normal is 20, 7 is catastrophically low.

We are thankful that Trish was John's nurse today, she's been with him through lots of this recent illness and takes great care of him and makes us smile. We are so thankful that Kim, the IV nurse that knows John so well, was working today and she was able to get an IV in him on the second stick. John is notoriously difficult to get an IV on. We are also thankful that Dr. Meyer and Dr. Shrivasteva, I'm sure I spelled that way wrong, were there today too. Both of them have quite a history with John and both are excellent doctors. They were able to get fluids figured out and going that have got John feeling soooooooo much better. This morning he was unable to lift his head or arms, and could barely stay awake for more than a minute or two, tonight he is hanging out with dad, sitting up in bed, eating banana bread and drinking tea.

In the course of this they did find that John has yet another UTI, is that driving this or just part of the overall current mess, we don't know, but he is on IV ampicillin and gentomycin for it and it should be cleared up soon. They did draw blood cultures, no one really expects it to be in his blood, but always it's better safe now than sorry later. If the last UTI didn't seal the deal on him needing the bladder/ureter surgery, I'm sure that this one has, albeit they will have to wait for a while until he is strong enough to go through it.

Dr. Shrivasteva spent a good bit of time on the phone with our GI nurse practitioner in St. Louis today and they are formulating a plan to let John's gut rest enough to get over the current issues and then to start getting some weight back on this kid. So we are taking some big backward steps. The plan is to put in a PICC line tomorrow or Wednesday and start John on TPN. For those of you that have hung out with John all this time, yes, TPN is the IV nutrition that damaged his liver, but it's a double bladed sword and it will give his gut time to recover from the current issues and keep his weight from dropping. The trick is going to be to maximize the benefit before the detriments of it kick in, thankfully John is in expert hands for this and we are confident that they will do what is best for him. Thankfully everyone agrees that John should be able to eat and drink what he wants, and then after he is doing better with that we will start a new GT feeding regimen with in mind to get him back off of TPN asap. This is going to be another big step back as he will be back on 24 hour g-tube feeds for a good while again, but this is a manageable issue and one that we have lived with before. Besides, if it gets him off of TPN and is gaining weight and growing again we're all for it and it won't affect his homeschool or therapies, he should quickly even be able to take an hour off to swim once a week after the picc line is gone!

So, that's the plans for the moment. Of course in John's world those plans could change at any moment, but we are very thankful that everyone involved is being quite proactive, all of them see John as a precious and amazing little boy and want to see him grow up!

Oh, the big tigers. Well, Children's Hospital in Columbia is part of the University system and the mascot is a big yellow tiger, the mascot came by today just as John was starting to feel good enough to sit up on his own. He was very impressed that a big tiger came and patted his head and blew kisses to him and gave him a little tiger to hold on to. The look on his face was priceless when the big tiger came around the corner.

We want to thank you again for keeping John in your prayers, and us too. We are having moments when this is scary for us as parents, but we keep reminding ourselves and each other that God's will for John is perfect and of all the miracles that we have seen in John's life, and hold onto Christ's promises for John and for ourselves.

Friday, August 17, 2007

Still home...

...thankfully, but little boy isn't feeling very well at all. It seems to be bacterial overgrowth in his gut and we are changing a medicine today in hopes that it will help and our sweet little guy will again feel like playing, talking and having a good time. We took him for labs yesterday and his numbers are holding steady, not great but steady enough to stay home.

Because John isn't gaining weight we will be experimenting with several bacterial overgrowth options in the near future, for the moment though we have to get past the current issues. Bacterial Overgrowth can among other things cause lack of weight gain, weight loss and even if left unchecked can starve a person to death while they are eating all the time.

In the normal persons system the stomach is kept sterile by the acid present, the small intestine has no bacteria of it's own in it, the ileocecal valve keeps things flowing from the small intestine to the large and not backwards, and the large intestine is filled with bacteria, mostly beneficial. Short gut kids have anatomical issues that cause the normal bacterial routine to be difficult at best. Since John has no ileocecal valve between his small and large intestines the bacteria are free to flow from his colon into his small intestine and he most likely has bacteria all the way up to the pyloric valve, the valve between the stomach and small intestine. His gut also flows differently than normal because it is very distended and even with good peristalsis things don't flow efficiently. This allows the bad bacteria a place to grow and do bad things like break down food in ways that the body can't absorb, or just steal the nutrients from the food and also to choke out the beneficial bacteria that break down food in a way that the body can utilize.

John has been taking flagyl and neomyacin, two antibiotics, in a 7-10 day rotation for a long time. Interestingly enough these actually kill the good bacteria also, but they increase the oxygen level in the gut at the same time with also kills the bad bacteria indirectly. We have been told by John's docs that he may always have to have some antibiotic help to maintain a workable bacterial balance in his gut. There are some natural things to try and we will be working with those as time goes on.

Probiotics, introducing beneficial bacteria to the gut, is all the rage right now, and even though the data on it isn't ironclad there is evidence that while not a cure-all it will certainly be helpful. So we will be doing that in one form or another. Probiotics are found in yogurt that has live cultures and can also be found in a powdered form too. John was on the powdered form a long time ago with some good affect and had been on yogurt for a while but that habit fell to the wayside on vacation and he's lost the taste for it. One of the doctors who talked to us about this gave us some valuable information on yogurt that the extra price for Activa and such are just advertising gimmicks and that all live-culture yogurt contain the same bacteria, that's what makes it yogurt, as opposed to it being buttermilk, or cheese, both of which also are made with bacteria.

Prebiotics is pretty much the new kid on the block, that is giving the gut the food that the bacteria (probiotics) need to live on. The easiest of these to do is Metamucil which is a soluble fiber. Unlike all the commercials that we see about Metamucil helping with constipation, which give the impression that the fiber itself does something, you need insoluble fiber for that effect, the soluble fiber of Metamucil is one of the favorite foods of the good gut bacteria and can not only help them increase but can help them help the colon absorb another 500+ calories per day. This is another area without ironclad proof but then there is a certain degree of art in all medical science so ironclad proof is not assured even in the best things. One study that we read though stated that while probiotics will increase the beneficial gut bugs 'x' amount, no I don't remember the exact number, what I do remember is that in that study it was found that prebiotics will increase the beneficial gut bugs '10x' and that the combination is higher still. So we will be doing that too, as the current crisis situation settles down.

When we were at St. Louis Children's this time the GI fellow that was on duty was taking the time to visit with us about these gut issues, he is doing his research on gut bacteria, we're thrilled to know that he's doing that and to have the chance to talk to him too. It is so nice to have access to such learned people so that we can learn more about why John has problems and what we can do to help him. Here's hoping that John doesn't have to be hospitalized again anytime soon, we know that it is part of his life that we will always deal with, but still it's nice to be home.

Monday, August 13, 2007

John is HOME!

We got to bring John home from St. Louis this afternoon! We're all pretty wiped out and exhausted but home, thank you for all your prayers and support. I'll post more details tomorrow.

Sunday, August 12, 2007

Everything is better with Dad!

Tonight John is hanging out watching tv and eating ice with dad. It is great to all be under the same roof, even if that is a hospital roof.

Friday night John so steadfastly refused to sleep that it wasn't until nearly 5am that he finally dozed off and of course was wakened at 6:30am by the resident who was checking on him. I thought he would take a good long nap on Saturday but no 1 1/2 hours and he was again begging for shoes and a walk.

We spent a very long Saturday walking the hospital hallways, sidewalks and even the parking garage. John made sure that we visited each place in the hospital that we had ever been with dad including running through the 7th floor parking garage checking all the black SUV's to see if it was dad. A very sad little boy ate his food and took his meds and health wise improved throughout the day but when night came it was a very sad little boy who finally gave up the search for dad and drifted off to sleep.

He slept very well through the night and woke this morning with both a hearty appetite and a much improved disposition. After breakfast he told me something was wrong with his hearing aid and then I found that the battery had died - the other hearing aid battery died Saturday morning, so this left us with only our sign. Prior to this moment I had been fairly impressed with how much sign I knew expressively and he knew receptively. Within 15 minutes of no hearing aids I felt like a very inept communicator and came to the further revelation of how desperately I need to be better at this.

Today's big news is that if John can tolerate a formula increase tonight from 500 ml to 750 ml that he can go home tomorrow. We're excited!

John at 2 bites of sugar cookie for lunch and was ready to walk. Later when I told him that dad was coming he was happy and somewhat incredulous, he was certainly happy to see him and thrilled when we went to the cafeteria for supper. He ate and ate and ate and more than made up for the dismal performance at lunch.

Afterwards he walked with dad, got to go for a wagon ride and even met Jen, one of our favorite nurses who used to work here and now was here visiting a patient from her clinic. It has been great to see everyone, it truly seems that our tour is nearing completion and that we are ready to return home. We'll see what tomorrow brings.

Friday, August 10, 2007

Bribery Isn't All Bad

As John is attempting to fall asleep tonight it's giving me time to reflect on the day. The funny part is he wouldn't be having such a hard time going to sleep if he wasn't doing so much better.

John has had a really good day. He actually looks better today than he has looked in the past two weeks. He's eaten well today, albeit we did bribe him with a Rice Krispy treat to eat lunch and with chocolate to eat supper, but really bribery isn't bad with kids right?

Mark had to return home today but, since John is doing well enough to have his IV taken out he was able to walk him out to the garage and wave and blow kisses as daddy left. I intended for us to then return to the room but John was ready for a walk and so we explored the hospital, in, out, up and down for an hour or so and then he decided it was time to tell everything goodnight and head back to his room.

While we were walking in the garden a Life Flight helicopter came over, John was fascinated. As I said a silent prayer for the child, their family and all who will care the them I was reminded how fortunate we are that this time John wasn't ill enough to fly.

As we sit in the building where many parents have had to say goodbye to their children I am reminded how fragile and how precious life is. I sometimes find myself catching my breath with fear thinking of my precious child who hasn't gained any weight in so long and who must start to gain weight and grow to remain in this life. Then I read the inscription in a book donated to the hospital library in the name of someone else's precious child who spent a mere 26 days in this life and I remember how blessed we are to have had these 3 1/2 years to hold and cuddle, love and laugh, pray and grow with our son. I do not know if it is a normal parent fear that their child will die or if that is a fear relegated mostly to parents whose child portrays the fragility of this life. I do know that life no matter how short or long is precious beyond what mere humans words can convey and that I fall asleep each night with a sincere thank-you to our merciful heavenly Father for one more day in the life of John, with a prayer for one more and yes, I am greedy, a prayer for many, many more and the comfort that lies in the knowledge that my son is in Christ's hands and will continue to be so whether on this earth or in heaven above.

As I finish this in what passes for darkness in a hospital room I marvel at the tenacity of a little boy who is too sick to go home to his peaceful dark room and too well to sleep in the chaotic semi-darkness of the hospital. So far tonight he has tossed and turned, signed some conversation to himself in which he counted his fingers and twice invoked the name of dad, kicked off his covers only to pull them back up and hold his legs and arms high into the air forming a tent which he found amusing enough to do on several occasions and is even now alternately pulling the cover up to go to sleep and then pulling it down and demanding more ice. Somedays I find that the only defense that sanity has is to laugh!

Thursday, August 9, 2007

Feed the kid...

...that is the first advice from the GI doc in St. Louis. Yes, we are back in St. Louis Children's Hospital, we came by ambulance yesterday. The doctor's at University in Columbia decided that John needed more expert care than they were able to give and so sent him on to Columbia. John's docs in Columbia are WONDERFUL and one of the things that we have always appreciated about them is that they know when it is time to send him for more expert opinions.

Here John is in the hands of Dr. Rothbaum, we love this man. He is an excellent GI doctor and has taken great care of John in the past. He got in to see John last night and listened to what was going on and his first recommendation was 'if the kid is hungry feed him'. John didn't have his hearing aids in when this discussion happened or I'm sure he would have levitated out of the bed to the food, as he had been asking for food since Tuesday afternoon. As soon as the docs left and I told him that he could eat, he was so excited and he ate a cup or so of cheerios, lol, it was the only thing I had readily available but he didn't care, he sat up on the bench in his hospital room and fed himself cereal until the very last crumb was gone, what a happy looking boy!

Tuesday when the decision came down that the Ileus was real and that he need to not be eating I explained to him that usually his food went in his mouth, down his throat, in his tummy and through his intestines into his diaper but that now his intestines were sick, and so his food was going in his mouth, down his throat, in his tummy and then getting stuck in his intestines and that was what was making him hurt. After I told him this he looked at me, I could see comprehension dawn and then he collapsed into sobbing tears. After that he would ask for food and I would tell him that his intestines were sick and he would look sad but we could move onto a book or toy or some ice without him throwing a fit, or getting upset. I am constantly amazed at the maturity in this child's head and heart.

Even with the sadness of being ill and being in the hospital we had one of the funniest moments with him yesterday. One of the nurses came to sit and talk to him and she was telling him that she had a baby in her tummy, he looked and me for explaination and I signed and told him that she had a baby in her tummy, and he got the biggest eyes and most incredulous look on his face. Today two of the staff came by to visit with him and they too are very apparently pregnant and he kept looking at them and we told him that they too had babies in their tummy's, the look on his face was priceless. I got to thinking about it though and this would be the only largely pregnant women he has seen in a long time, I wonder if he is putting it together in his head that his speech therapist is also pregant, that should be interesting when we get to go back and see her.

So today, he had a good night last night and woke without puking or anything this morning, he ate a few bites of breakfast but not much, played for a while and then we could see that he was going downhill a bit again. He's down for his second nap now, all he wants is ice and he's not looking as good as he did this morning. Doc's orders are to let him eat as much or as little as he wants, put him back on his home routine g-tube feeds and watch to see what happens. The pediatric radiologist here, who has done serveral upper GI with small bowel follow through tests on him says that yeah, his gut is slow, but not horribly worse than it ever has been. So we are watching and waiting to see what happens.

Mark came in last night and is going home tomorrow, then he will be back on Monday for a couple days and then go back home. We still have absolutely no idea whatsoever how long John will be here. While he's here we're bending every ear we can about the nutrition stuff that we've been reading about to deal with bacterial overgrowth and to increase absorption in the gut, we are hoping that while he is here we can address the not gaining weight issue. I'm sure the medical staff will be as glad to see us go home as we will be to do so when the time is right. Meanwhile we are relearning how to live in the hospital, reading lots of books and working on learning more sign language. Depending on how John is doing tomorrow Dad might be updating the blog if John is not up to sitting in the resource room for me to do it.

One more time I want to say thank you to everyone who prays for John and for us, we are blessed beyond measure.

Tuesday, August 7, 2007


It's called an ileus. That is why John is back in the hospital tonight. This morning we had no idea what was going on other than he kept throwing up and he was getting weaker by the moment. By the time dad rushed home from seeing someone in the hospital in Columbia to get us and rushed us back to the hospital John was unable to even hold his hands together to make the sign for 'more'. After a lot of testing we found out that the problem is an ileus, a part of his intestines just isn't moving right now, lots of things could cause it, we don't know for sure which it is right now. What we do know is that he is going to be hospitalized until his bowels are working correctly again, and that could be tomorrow, it could be a week or so.

When I left to come home John was winding down and getting ready to go to bed, but he was still sitting up, signing, smiling and carrying on with the nurses, so he's tons and loads better than he was this morning. We have so many things to be thankful for today, not the least of which is a kind and compassionate family who completely understood when their pastor had to leave the bedside of a dear member to rush home and be dad. We are very thankful for good doctors, a great hospital, good nurses, and a little boy who despite the pain of getting in IV's and being sick still wants to smile and talk to those around him. We are thankful for family and friends who keep our little guy in their prayers. We are most thankful for a faithful and caring God who has carried us through one more day of health crises with reminders all around us of how much we are loved and how we can show His love to others.

Monday, August 6, 2007

Corn, corn and more corn...

...but mean mommy made him take 3 noodle bites and 3 piggy bites too! Actually John ate the best tonight that he's eaten since we returned from check-ups in St. Louis, we're hoping this is the harbinger of things to come despite his low energy level this evening.

We've been in search of a perfect mac and cheese recipe for a while, smooth, creamy, cheesy, and using real cheese, butter, etc., we finally found one but of course that still didn't make John happy with eating noodles. He didn't protest over these as much as he has over other noodle recipes, so maybe he'll eventually learn to like them, who knows.

Well at the hospital the last time I finally had to pull out the 'h' word. One of the therapist was pretty insistent about knowing where John was going for preschool this year and I finally told her that he would be homeschooled, while I can't say that she was thrilled or impressed, at least she didn't look shocked or offended, I'm sure we'll get that reaction from someone out there some day, lol, I just keep bracing myself for it. I was however really impressed with the reaction of the coordinator for the school. We ran into her at Wally yesterday and let her know that John would only be traveling to therapy once a week this coming fall and she was happy with it and said that she was glad to have the info so that she could get his IEP written up, of course we haven't used the 'h' word with her yet.

Just in case the thought has ever floated through your head that the government would be great at handling the health care in this country and nothing else has persuaded you that this would be an insane proposition, get a hold of this - to get John evaluated for and have 4 vision therapy sessions it would be $820 out of pocket if we go to the Medicaid provider, and $805 if we pay cash up front to the non-Medicaid provider, hmmmmmmm, makes me think. Okay, this is a different kind of therapy than what normally goes on, but he has a load of other therapists and doctors that really think that he might need help relearning what level looks like as his neck strengthens and he's able to look at the world in a new way. Now, we are thankful beyond words to the taxpayers of this state and this country for the health care that has been provided for our son, we certainly wish that we were able to afford the care that he needs without this assistance but still, if you ever think that the government should be in charge of all of health care park yourselves in the shoes of a government health care recipient for a few minutes, you'll see it from a whole new perspective. Well okay, I'll get off my soapbox, lol, for the moment :)

That devilish little grin...

...John woke up early this morning with smiles and is looking and feeling better than he has all week. So far this morning he's helped put his own dirty dishes in the sink, put away the silver ware, fed the dog her snacks, feed the fish, and done his all time favorite chore, throw the laundry basket down the basement steps. Now he's sitting on my desk playing with the phone with that little grin on his face, the one that lets us know that if he were able to be independently mobile nothing in the house would be safe today :)

Sunday, August 5, 2007

Home... least for now. John is fighting hard against this intestinal virus and got to come home again yesterday afternoon, hopefully this time he will get to stay home, but time will tell. He has done fairly well today, we didn't make it to church because he was just to exhausted to do so, but at least he's still here.

Friday, August 3, 2007

A Walk in the Hall

Well he was feeling well enough to sit up and eat some of our gyro and ask for and enjoy a walk in the hall before I left this evening, but John is back in the hospital today. The blood work shows that it is most likely an intestinal virus, these aren't fun for people with normal guts and even less so for little boys with short-gut, so he needed more IV fluids today. Tonight he is hanging out with dad, while I am home to get some sleep. John might get out again tomorrow, but more likely he will remain in the hospital until Monday, of course all that could change through the night.

Thursday, August 2, 2007

Time to Play

John was feeling a little better this evening, you can tell from the pics that he's still not up to his normal level of silliness but at least he was ready to play, even if the smiles were few and far between.

One of the things that they ask at the hospital when he's admitted is about his development and one of the questions was does he pretend play. I hadn't really thought about it, but tonight since he was feeling better I thought we try and see how it went. I got out a number of John's bears and he fed them, gave them drinks, hugs, kisses, oh and of course they got phone calls - if you'll look close in his hand you will see he's holding the phone, sister bear had just gotten a call and he was getting it to her. I thought it was funny that his bears also needed medicine, some of them like theirs orally and some in their g-tubes, he filled the syringe back up out of the empty bowl several times to make sure that all were properly medicated, and of course had to listen to them with his stethoscope and look in their mouths with the tongue depressor. I'm looking around to see if we have one of those little pen lights somewhere, I want to see if he'll check their eyes and ears. At any rate he had fun, so did I and next time they ask me if he can pretend I can give them a resounding "Yes!"

While Mark was out in the country parish for the ladies meeting we also had time to make dinner and bake some banana bread. John helped shuck the corn, put the bullion cubes in the pan, salt and pepper the meat and then he had a good time sitting on the counter helping with the banana bread.

He loved turning the mixer on and off, helping to put things in the bowl, breaking the eggs and helping to whip stuff, of course his favorite is always the beater in the end :)

Little boy is in his bed, still talking but doing well, all in all it's been a better day for him and makes us feel hopeful that he is on the upswing of this thing.

The Affluence of Poverty

I have often thought of and then hesitated to put my opinions here, but well that's what blogging is all about, okay maybe not all, but at least somewhat about and so I figured I would enjoy being my own opinionated self on my own blog. Mark would tell you that I enjoy being my own opinionated self all the time and every where, but really I have toned it down over the years of being a pastor's wife, okay so at least I've tried. I'll use the label opinion for these little imo posts and if you just want to keep up with John and not read the soapbox version of the inside of his mothers head just skip them!

Last week sometime Rush - yes I listen to Rush Limbaugh, and yes we like him, and yes we let John listen to him too, and no we don't agree with everything he says, but then if you've met us you know that we don't agree with everything anyone says! Okay, Rush was saying last week something about the affluence of our country and that it is not the richness of the rich people, like the Kennedy's and Hollywood types, but the richness of the poor among us that he was discussing. Now I don't remember all of what he was saying, actually not much more than what I've stated, but it has linked together in my head with a comment from my mother about the seeming global irresponsibility of kids today, by which she normally means anyone younger than her, and the way that the church is trying to cowtow and cater to society just hoping that a few people will deign to darken it's doors and sit upon it's pews.

The affluence of poverty here in the good old USA is well abundant around every corner and in every commentary we hear about how the citizens of the US are getting fatter all the time. It's hard to listen to the whining of the left about those in poverty and then at the same time listen to them whine about how fat everyone is. I don't think you would find obesity and poverty tied together if it weren't for affluence, after all how many fat kids have you seen running around in those Save the Children commercials, or in the news of Darfur and other places that actually has poverty. Mark and I lived south of the Pine Ridge Reservation in Nebraska/South Dakota and I'm here to tell you that even though that is statistically the most poverty stricken county in the US it is still full of people struggling with obesity Now, anyone that knows me knows that I fit in the fat kid category, although at 41 kid could be debated, but not really if you knew me, anyhow I'm certainly not sitting here in my plus sized pants whining about how impoverished I am, so well I'll continue to stand on my somewhat squashed down soapbox and opine.

I think we as a nation, and as a church are choking on our affluence. We nor our children know the meaning of NEED, for we have food, shelter, clean water and clothing, even the poorest of our children go to school, most of us have at least one television, air conditioning and when was the last time that you saw someone walk to work or school because they needed too. We do not need the basics in life, few Americans my age have probably ever gone to bed hungry, unless they were being punished. Now I'm not advocating that all of us shut off our utilities, stop buying food for our families and sit in poverty to see what need feels like. I'm not really sure what I'm advocating, or that I'm advocating anything, I'm really just thinking out loud and mostly I'm thinking about my own life and the people that I'm around. How we are focused on things and money and not on others, even our focus on others is on providing food and things and not so much the One Thing Needed, the Gospel of Christ. We no longer reflect the stories of our parents, struggling to feed ourselves and our kids, struggling to make the world a better place, we are focused on us. Okay there are those out there who are trying to save the planet but that's a whole other soapbox for a whole other day.

Pastor's that I have heard who have returned from the mission field in Africa and Russia speak of how people walk miles to come to church, how they sit for hours on end hungry for God's Word to be spoken in their ears, how blessed they feel to have the Bible in their hands, how they teach there children to love God and all of these things are a wonder to hear. Especially when we sit in a place where people whine and complain if the Pastor preached a few extra minutes because then lunch was served at 12:05pm instead of noon, how inconvenient it is for them to attend church because you know that's their one day off, how they would rather be somewhere else and often that their bodies sit in church while their minds are off wondering around somewhere. I must admit that I have the same temptations and the same downfalls, as a pastor's wife I sometimes attend church because I must instead of because I desire it, so I'm no better than the rest but still what is with us. Are we so engorged on our life that we can no longer hunger for our life in Christ, is everything so good here that heaven is just really not that appealing anymore and why is it that our American rear ends cannot stand the pew for more than an hour but the African rear end can endure many and still long for more, it must be that obesity thing again.

So I sit here in my air conditioned home, having just eaten supper, typing on one of the computers in my home that is hooked to DSL and wonder, are we so affluent that we are dying of starvation.

Just something funny

Mark's sister sent this funny video from You Tube Click Here to enjoy some momsense :)

Thankful... still be at home. John looked and felt much better this morning, he has zero stamina but after a nap he feels better, we're up to two naps so far today. He goes to see his pediatrician in the morning and then to get the hearing aid that he keeps asking for, it's been in the shop for a week and he's been asking for it every day.

Wednesday, August 1, 2007

Still home...

...for the moment at least, John has had a very rough day, he still doesn't feel good at all but for the moment we are still at home, how long that will last is anyone's guess.

We did get some good news today though. The urologist called, Dr. Austin is the surgeon that we've been waiting on to hear about what, when, etc., we were going to do with John and his hydronephrosis. Dr. Austin says that after reviewing John's records from the beginning that his hydronephrosis isn't really worse, considering that he had a full bladder during the ultrasound and that they should have then cathed him, emptied his bladder and checked it again. He does not see John in an emergency state, and for that we are thankful! He does however think that it is time for John to have another VCUG scan done, which checks on the reflux in his ureters, and if that hasn't improved then it is time to start discussing surgery to do some repair there. So we will be having that scan done and seeing him again soon, and then will have news on what, when, etc., is going to happen with John and surgery.

Despite John feeling awful today he was still signing to us, even working with me on some new signs and was giggling at Lucy chasing a fly in the window this afternoon, every our charming little guy.