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.