I keep coming and going into the PPMD site...to learn new things and the challenges that we all face on a daily basis.
This last week has for sure been a challenge for Tim...actually this month. He has been in ICU 2x's this month now. Apparently his bipap setting was set to high for him and probably caused the neumothorax. They thought it would resolve the first time he was in here but instead it only got worse. By July 21, after spending 8 hours in the waiting room with chest pains and SOB and another 6 hours in the ER they realized his nuemothorax had not only returned but with a vengence.
Anyhow....I have blogged about it on my own blog
. You are surely welcome to read about it if you wish ...but also when you read it, look at it as a learning experience, not only it was for us, but it can be for you. There is a lot to learn about the bipap and if not used or set probably can cause a neumothorax (collapse lung). After being on the chest tube for a week now, it has not improved nor did it get worse. However, if they have surgery to repair his lung, it could mean he will never get off the ventilator either due to how weak his lungs are. So how to you "cure" a neumothorax if the bipap can make it worse but surgery can kill you too?
I ran into a mom here who also has a son with DMD here at Shands...and she was telling me what her boy (only 13) was going through. She asked a lot of questions and we did compare notes. Funny, she really doesn't like the MDA either. But she has told me that she is familar with PPMD.
Well...I'm exhausted...I'm in pain right now. I'm going to lay back, suck on a popcicle and watch a netflix movie on my laptop!
Hope everyone is doing well and having a good summer!