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, August 2, 2009
Had our first post-transplant scare...
Malakais appetite lately has been down. He's not been really interested in eating and he's been drooling alot. I chalked it up to teething and didn't think much of it. Yesterday he was crabby and wanted to be held as much as I would hold him! We had a showing on the house at 2:30 and so I had to clean and couldn't hold him as much as he wanted. He was cranky, but was managable. I put him to bed early and he woke up around 2:00 am to nurse. When I picked him up I noticed he was really warm. I asked Josh to get the some Tylenol and the thermometer. It was 100.2 F (37.9 C) I called the doc on call and he said if it reached 38 we'd need to take him to the ER but to watch him overnight and as long as he was able to sleep we could wait until morning. Long story short, all day today he's been off and on with a low-grade fever. When he was discharged from the hospital after transplant, we were told to call if his temp reached 38 Celcius (100.4 F). With his Broviac still in, a fever could be a sign of an infection, so they always want to double check to make sure this isn't the cause of his fever. His temp never got that high, thankfully...but it hung out around 37.9 C (100.2 F) alot today. I spoke with the on-call GI doc about four times and he told me to get him into his peditrician tomorrow and as long as he doesn't reach 38 it'll be fine to wait. He's been tugging at his ears and drooling like crazy so Josh and I think maybe it's teething or ear infection. Either way, we don't believe it has anything to do with his liver. We've been giving him Tylenol every 4-6 hours as needed. As soon as it kicks in, you can see a huge change. He'll start to babble and smile. Then a few hours later, he's back to being fussy and irritable. Hopefully by morning he'll feel alot better. He didn't really eat much at all today. Drank about 4-6 ounces of juice and breastfed, but really didn't eat anything solid. Again, hopefully tomorrow will be a better day. Having a simple childhood illness will be totally different with Malakai than with Makena or any other healthy child. I guess we saw a glimpse of that today. I'm sure with time it will get easier, but I kept thinking the worst all day. Say a prayer for Malakai if you read this.
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