We drew labs Sunday morning (we draw labs every day) and her team's inkling was correct - her liver numbers started to elevate. Both of her LFT's bummed up about 50 points. Defiantly not in the "scary" range - but we didn't want to see them trend this direction already. Dr. Kyle wanted to take a proactive and aggressive approach - thinking she was starting to reject and he wanted to stop it, so he gave her a big bolus of steriods. But until we knew for sure what was happening to her new liver, the plan was to watch and see what her LFT's were gonna do over the next day or two.
The bolus of steroids didn't help. By Monday, they continued to elevate.
Addie also continued to feel more and more sick. Her throat hurt her so badly that she could only cry and moan from the pain. Poor sweet girl. The doctor's did all kind of cultures to see if she was sick with a cold, flu, or other type of virus. But everything came back negative. Our next thought was strep.
By now, the doctor's were thinking that her body was starting to reject this new liver. They weren't AT ALL concerned about this because in the first 6 - 8 weeks after transplant, about 80% of patients reject. They actually expect it when a healthy kid gets a transplant because it simply means their immune system is doing its job. This doesn't mean that Addie will need a new liver - it just means they need to use some heavy hitter immunosuppression drugs to stop her immune system from attacking the new liver. This is our new battle - the fine line between giving her enough of an immune system to fight against infection but not to fight her new liver. Thank God we have a team of doctor's that have given their entire life to learning about liver transplants and rejections and have written research papers and have lead the transplant community in successful liver transplants. We trust them. And we trust that God's driving this ship. So we knew that whatever they wanted to do with Addie, they could fix what her body was doing.
The recommendation was for a liver biopsy. This would show us exactly what was happening in her liver and exactly how they needed to fix it. So Tuesday, February 18th, Addie had her first liver biopsy. Since Addie would need to be under anesthesia, again - we also asked ENT to do a scope so we could figure out what is going on in Addie's throat (which included a strep culture). We also asked them to insert an ND tube. This would allow us to feed Addie without her needing to eat or drink. This was not at all what we expected Addie would need, but she has gone for about 3 days with barley anything to eat or drink. By now she was extreamly dehydrated and had barely any energy. She needed help - and this is the only way we knew how to help her.
Everything went well in IR. ENT did their scope, the ND Tube was place, and the liver biopsy was done. It took about an hour and a half and she was finished. Back in her room on 7B and resting comfortably.
It took 24 hours for the results of the biospy to come back- and it showed NO signs of rejection. Thank you God. So what, then, made her LFT's respond the way they did...... A sinus infection. Addie has low muscle tone (a direct effect from her initial crisis when she was 3 days old and her ammonia hit 2100) which has also given her a very weak cough. During her transplant, the surgeons pumped Addie full of fluids and also inserted a breathing tube. Both scenarios left Addie with a bit of congestion that she needed to clear. So combined with Addie laying in a hospital bed and her weak cough - the congestion hung out and grew bacteria and became infected. So the treatment was easy, start ammoxicillian.
Sounds easy enough. But I'm honestly so tired of watching her fight so hard to feel better. This journey is harder than I imagined. It is a very helpless feeling for your mommy and daddy!
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