They determined he had a bacteria called klebsiellla. Luckily it was sensitive to antibiotics. They switched from the original antibiotic to one more tailored to this bug. It's fascinating stuff that they can figure out what each bacteria is sensitive too and what it is resistant too and tailor each patients treatment of antibiotics. I am thankful everyday that we live in these times and in a country where we have access to amazing healthcare. I am also so thankful for our team of doctors and their communication with each other between Mt. Sinai and Cohen's. We are so lucky they all go out of their way to check up on him and make sure he is getting the best care. We are fortunate that we have met basically everyone in the GI department at Cohen's so we feel comfortable with whoever is on call. His normal GI who has followed him since he was 6 weeks old and worked with us through finding out that he had Biliary atresia wasn't on this week but she took time out to stop by to check in on us. Philips pediatrician who also does not round at the hospital anymore, stopped by to check in. And when I emailed his hepatologist at Mt. Sinai frantically on a Sunday night with some fears hoping to hear from them the next day, she called me that night to put me at ease. He is on contact and droplet precautions so he can't leave the room, so it's been a long week trying to keep him busy. He gets frustrated easily and is just plain crabby at times. Who can blame him. Being sick has caused his prograf( anti rejection med) levels to go out of whack. It was 18.6 when it should be around 8-10. Levels like that can be very dangerous. It can affect the kidneys so it needed to be reduced fast. So they stopped it for a few doses, which is very nerve wracking in itself. His kidney function so far seems ok. Now his dose is all messed up and we will have to figure it all out again. They've had to replace his IV 4 times and he has to get blood drawn every morning which ensues in lots of screaming and croc rolling which usually takes about 4 people to help get the task done. When I say screaming, I mean horrific screams that has surely terrified all the other patients and staff on the floor. People literally come out of their rooms to see if he is ok. Every morning we are usually woken up by the phlebotomist and I have to sit in bed with him in my lap and cross my legs over him to pin him down and basically put him in a modified sleeper hold with my hand around his neck and grabbing his opposite hand to avoid him seeing when they stick him and him grabbing the needle out of the phlebotomists hand. I'm sweating just thinking about it. But these things are necessary. There is no choice in the matter. That is the only way to truly know what is going on inside. All we can do is try to make the rest of the time a little enjoyable and less clinical for him. This is how we spend some of our time.
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Get well soon😇😘
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