The doctors are looking a little grim these days. It seems that the improvements of last week were pretty much erased by Mr. Bug’s failures over the past few days. Today he is a little better than yesterday, and they are trying to help him tolerate lower ventilator settings again, but his blood pressure and heart rate are not really cooperating as much as they have in past days. This is the thing. From everything we’ve read and heard, this is not something that is quickly cured. If a person does survive this disease, it is some steps forward, some steps back, and one hopes that the sum of the steps is overall forward. We are still ahead of what we were 2 weeks ago, but very, very far from where we need to be for him to be out of the woods. Depending on who we talk to or what we read, he has a 5-15% chance of surviving this, but we won’t know whether he fits into the 15% or the 85% for some time. If his lungs and body begin to heal, he’ll eventually come home and we’ll throw the biggest party imaginable. If he does not begin to heal, the fungus will begin to eat him, body part by part, until he can’t sustain himself even with help, and he will have a heart attack, or he will suffocate, or his blood will become extremely toxic, or his brain will begin the bleed, or his liver will go into rejection, or any number of other possibilities will occur in any combination, and he will die.
Until we know what path he will follow, all of the doctors are working frantically to heal him. A LOT of things need to happen toward that end. His bone marrow and kidneys need to wake up so he can keep producing blood and all the kinds of cells he needs to fight the fungus. His kidneys need to start filtering his blood again so he can pee on his own. His lungs need to show marked improvement and begin working on their own. His heart needs to consistently be able to maintain it’s rate of beating, and his vessels need to cooperate with his heart in two ways: they need to stop leaking, and they need to maintain the right elasticity and tension so that his blood pressure will stay where it is supposed to be without the use of drugs.
There are also so parts of him that need to stay healthy. Mr. Bug’s liver is pretty happy right now, and it needs to stay that way. His heart is pretty happy right now, and it needs to stay that way. His gut is working nicely, and it needs to stay that way. His brain is still nice and healthy, and it needs to stay that way. His lungs are still accepting oxygen, and they need to keep doing so.
It appears that this is the one of the most challenging cases these doctors have dealt with in a while. He is a kid with short gut, a liver transplant, lung scarring from previous intervention, he is just coming out of liver rejection so he is extremely immune suppressed, he is little, and he has already endured so much that his body is already compromised in general. Because of this, these doctors take him very seriously. To them, it is a bummer that he is dying, but it is pretty exciting to deal with such a complex puzzle. They get to present his case at big, fancy meetings all over the place, they have an excuse to call their smart, fancy doctor friends all over the world, and if he lives, they will have some major bragging rights. Mr. Bug is a bump out of medical boredom, and he is fortunate to be the one who keeps their attention the longest! This is just not something doctors see all the time. We are very fortunate that Mr. Bug can benefit from their adventures in medicine! 🙂
Please pray!!!
1. Lungs – We need some MAJOR healing TODAY – TOMORROW – EVERY DAY from here on out!
2. Kidneys – They HAVE to start producing pee SOON or he will lose them!
3. His bone marrow has to wake up and start producing all of the right kinds of cells so he can fight this battle more efficiently!
4. It’s a crazy thing to pray for, but I’m praying that this is the dumbest fungus on the planet, and that it just sits there, not knowing it is supposed to start eating him up, so those drugs can continue to work their magic.
Please continue to pray with us! Everything is against him right now except for the prayers of the saints!
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