Not many new things are happening today. The incredibly cheery infectious disease team has decided that the antifungals have been so effective that they can change them to less invasive drugs, and Mr. Bug’s kidneys will hopefully respond with some function. They explained that with kids like Mr. Bug with short gut, they can’t give the safer drugs because they are oral, and they may not be properly absorbed. The only way to control the absorption, then, is to give the harsher version through an IV, and these versions overload the kidneys and the liver, so they try to get them off of them as soon as they possibly can. This is really good news that they are really working together to manage this illness in such a way that each organ has the least amount of damage in the end! Sitting in the PICU is very much like watching House! The big difference is that House usually finds some magic illness cured by some magic drug and the person is magically better in a very short time with no lasting problems. In real life, they find magical cures for magical illnesses, but patients don’t always walk out looking so chipper. We are praying that Mr. Bug is one of the ones who walks out miraculously healed in every way! The kidney doctor on call this week has a little different take on the probability that his kidneys will come back. Both she and the main PICU doctor (AKA Neil Diamond) believe that if he can begin to heal up soon, his kidneys will resolve themselves completely, given enough time. 🙂 🙂 🙂 SO, we are still just waiting on those little lungs! He has been off of the blood pressure medication since yesterday, and his cells and vessels appear to have stopped leaking water, which means that he is overall looking better than even a few days ago! Everyone looks pretty happy about his progress, and instead of using words like “Kids how have this die from it” they are using words like, “Kids who start to get better progress to health in these ways.” We are unimaginably relieved, but we still understand that whereas a week ago his chances of survival were about .5%, today his chances of survival are about 10%. The odds are still very much against him, but his chances of living through this increase with every day of his improvement, even if that improvement is fairly slight! We were expecting next week’s doctor meeting to include a discussion of how to bring him off life support so he could die peacefully, and our social worker’s job this week was to find out how a foster/adoptive family goes about getting rights to bury their baby. I believe instead we will have a very earnest meeting about how to proceed with his care, to maintain the balance between his healing and his immuno suppression for his liver, and how to keep him from catching something else in the meantime! As the infectious disease doctor said this morning, the more plastic one has sticking out of one’s body, the higher one’s chance of catching something deadly.
So the big things to pray for are these:
1. Continued death and carnage as far as that fungus is concerned!
2. Protection and healing for his lungs!
3. Protection and healing for his kidneys!
4. Protection for his liver and heart!
5. That the new antifungals will continue to kill the fungus while allowing his liver and kidneys to heal up!
6. A keen eye for the infectious disease doctors as they test daily for new bugs in his body, that they will be able to kill anything new quickly and safely.
Right now, my biggest concern is for the other 3 babies. They appear to be worn out by all of this. During Mr. Bug’s rejection episode, they were able to come with me to the hospital for visits and we all hung out, went for walks, played on the playgrounds, had all kinds of fun. This time, they can’t go very often, and they are missing their normal lives quite a bit. They need prayer for peace in their little hearts about all of this!
Thank you all for your continued prayers for our baby! It will be very slow progress, and perhaps there will be setbacks, but I believe strongly that he will be celebrating a 3rd birthday, alive, in August!
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