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.
The Food Adventure Continues - I started this blog when we started changing the way we eat. Finding out we needed to be gluten free, actually for me wheat free, was a huge big deal. Late...