Not much new info on Mr. Bug. Today his ventilator settings were decreased, and he tolerated this fine. The goal is to wean him off what is called forced air ventilation (I think) and on to what is called volume ventilation. The forced air ventilation forces air into his lungs and breathes for him. The problem with this is that prolonged use of this type of ventilation causes damage, and as he has been on a ventilator in the past, it is very important that he get off forced ventilation as quickly as possible. With volume ventilation, Mr. Bug will breathe on his own, but a LOT of O2 will be blown into his lungs, kind of forcing it down into all his airways. As of now, the lung disease has made his lungs very stiff, so they can’t expand or contract very well. I think it is kind of like when you injure your arm muscles and then your arm gets stiff for a while and you can’t move it very well, but after a few days, even though it still hurts, you can begin to use your arm much more effectively. Enough time appears to have passed so that Mr. Bug’s lungs are more elastic, and he is able to tolerate less pressure holding his lungs open. He was on a setting of 16, which is the highest setting one can sustain without certainly causing damage. He is now on a setting of 11, which is moderate, and he needs to be on a setting of 5-10 in order to switch to the volume ventilator. We are hoping that in a day or so an attempt can be made to switch him over. This does not mean that his lungs are any better. If anything, the x-rays show that they are slightly worse. However, it does mean that his lungs are tolerating their new “normal” better, and this is very good news. The lung doctors are pretty disappointed that there has not been more healing in his lungs, and they are extremely concerned that some pretty extensive permanent, fatal damage has been done. However, they are cautiously optimistic that his lungs will heal up at leas somewhat, and hope that he can live free of the ventilator eventually. His other issue continues to be his kidneys. The kidney doctor is concerned that he has made no urine for over a week, and she is running out of time in the window when he can come off the dialysis with little or no kidney damage. Normal kids would be candidates for kidney transplants, but a kid like Mr. Bug would not have any real chance of receiving a kidney at this point in time. Everyone is waiting with bated breath for the most recent fungus antibody test to come back, as that will hopefully give the cheerful infectious disease team the green light on switching his antifungals to something nicer to the kidneys. There has been an increase in his g-tube feeds as well. This is important as he is currently on TPN Lipids, which is a kind of nutrition method where the nutrients are fed directly into your blood. The trouble with this method of feeding is that it causes liver failure. Oh, wait, we’ve already been there, done that! So they want to get him off the TPN ASAP.
Teeny tiny steps to recovery…very teeny. Please don’t become weary in prayer for our boy every single day! He NEEDS to be bathed in the healing power of the Holy Spirit!
We have all tried to resume our regular lives. I went back to work today, and a very special student brought me flowers!
From one of my very precious philosophy students!
Pretty much made my entire month! 🙂
I think while Mr. Baby Bug sleeps this disease off, it is time to focus on getting our running routine back and planting the garden. As Garrison Keillor once said, “Sometimes it helps just to get outside!” Oh, happinessssss!!!!!!!
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