Long week, and not much progress on bipap and cpap settings. He had a rough Thursday and Friday but is recovering nicely and is back on track. He requires constant air pressure to maintain good breathe and lung sounds. We are trying to wean settings, but at this time he is unable to maintain breathing without the machines at lower settings. He still communicates with us via sign language and is happy most of the time. All his brothers came to visit today, on Mother's Day, and he was so happy to see them! He played with them for about 20 minutes and then fell asleep. Hes sleeping more, and his days and nights are a tiny bit mixed up, but is tolerating all respirtory treatments. When he sleeps, we let him sleep. I feel that he gets the best healing when he is sleeping.
PT,OT and Speech are on board and are working with him as he tolerates. He continues to maintain good sitting balance, then rests, then tries again to sit up on his own. He has made progress in that area, and will work continuously on his breathing and maintain good oxygen levels while sitting up. Its very difficult... and its a very slow process. We will continue to be in ICU until he can breathe without the machines.
We have a long road ahead....
In the meantime, I have joined the YMCA and am preparing for the other boys to join me this summer for camp here at the hospital and surrounding city. The city offers many activities and funding is available for hospital families. I think they will enjoy the camps as well as the other various activities that the YMCA offers and of course seeing their brother will make them all very happy. I want to be able to try to make their summer as "normal" as possible.
Happy Mother's Day!!!