Once again our favorite hospital floor is home. I guess if we have to be here it couldn't be any more pleasant. I believe this is the 7th admittance this year. I could be off. What a year so far. Joshua has a new central line infection, the third type in 6 months. Each has sprung from bacteria in Joshua's gut, each a different strain. Ugh! After 72 hours of no growth on his cultures, we will be allowed to go home.
On a lighter side, the Pancreatitis is finally subsiding! We'll have labs drawn in the morning to see where we are, but as of thurs. his Lipase was 140. Woo Hoo! He's been able to eat by mouth for a week now and we are re-starting his tube feeding now.
Speaking of tubes, I neglected to post anything about his last stay. Three weeks ago, Joshua began running fever. Line infection. We had just gotten over his 10-day stay in hospital and here we were again. But on the last day, Joshua's GI placed a GJ button. It's really cool, as far as gastric adaptations go! It's a little bigger than his old button, but has a gastric port (goes right into the stomach) and a J port (it is a tube that runs down through the stomach and into the small bowel to the jejunum). We could feed him while bypassing the stomach still allowing the pacreas to rest. It's worked ok so far.
However, the used a camera to assure everything was placed correctly and his GI was floored by the amount of standing fluid and the size of his small bowel. Even having been NPO for 6 weeks, it was still huge. So of course I ask him, "What's the solution?" He tells me there is no solution outside of transplant.
It's kinda funny, everytime I hear a doctor say the word "transplant" I go somewhere else. My mind just shuts down instantly. Honestly, I just can't go there right now. That is not an answer. It's a set of all new problems.
A little girl I've been following was not even one year from her transplant and passed away last month. I shutter to think...
My prayer is that there IS an answer out there. Something we just haven't tried yet. Actually my screaming, wailing cry out to God prayer is that for absolutely no reason the Lord will heal Joshua's intestines. The simple problem of not being about to absorb nutrients from food is such a stumbling block. We take eating for granted. Shame on us! We just assume what we put in our mouths, chew and swallow will make it's way through pulling all necassary nutrients out along the way.
I don't think it's unrealistic to ask God for a miracle. All things are possible! Oh, God. Please lay your healing hands upon him and for no reason, fix his tummy. My amazing friends and family, join me in this petition.