Malakai was born Sep 24, 2008. At four weeks old, multiple tests determined he had a rare liver disease called Biliary Atresia. BA is when the bile duct between the liver and the small intestine is blocked or absent. He had his first surgery Nov 6 to temporarily fix the problem. During a five week hospital stay for ascites, Malakai was put on the transplant list on Mar 20. He recieved his "Gift of Life" May 12, 2009 at Children's Hospital in St. Louis.
Sunday, May 24, 2009
Better day today
Malakai slept so well last night! He woke up alot, but went back to sleep quickly and slept til 10:30 am! He's been itching where his incision is...I can only imagine how much it must itch. The surgeon came into and said his cultures came back with a particular bug...I'm not even going to pretend I know how to spell it. But it's a good thing we know what it is now, they can treat it accordingly. He's on three different antibiotics now, and they're probably going to stop one of them tomorrow. He had a blood transfusion yesterday and his hemoglobin level was normal today, so that's good. He has been acting a lot better today...this morning they came in to flush his NG (feeding) tube and it wouldn't let anything in...they left it alone and tried again a few minutes later, still nothing. So they waited a few hours and it still wouldn't allow anything to go in so we had to take it out. She then tried to push some fluid through it after it was out and still nothing. So it was blocked, which is strange because he hasn't had anything go through it other than formula. So today he has been tube free! We decided to see how he did without the bolus feeds. He's nursed about every 2 hours and ate table food really well. He had spaghetti, mashed potatoes, and applesauce with chocolate pudding. He'll be put back on the tube tonight for the continuous feeds...Hopefully we'll still get to go home on Tuesday. I haven't asked because I'm not sure I really want to hear the awnser! Praying we go home soon, it's really starting to get to me...being here in the hospital and all. I'm sick of it! I wanna be home with Makena and feel normal again! But then I step back, look at the big picture, and thank God that we are where we are!
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