Joy and Sadness

To all of Gabe's peeps out there he came home Tuesday afternoon after a weeks stay in the CASA PICU. This time he came home being back to baseline. His secretions, o2 need and fiestyness is all there. The H-flu was still there and this time he had to go up on his vent support and was on the vent all day for several days. This time they went right to IV antibiotics. He needed the help re-recruiting his lungs and a rest. The xray of his lungs showed the pneumonia was worse then a few weeks ago and his o2 need in the PICU was at 60% to keep him at his minimal sat. But, now that is all a distant memory. But, not so fast. At his post picu followup his pediatrician, who is awesome, mentioned that we needed to talk with his other doctor about next time he goes up on his oxygen so fast about keeping him on the vent all day and adding pressure support asap. Which would not allow the for the lung collapse and help with the pneumonia. He was also questioning the idea of decanulating him this year and that the benefit of the ability of putting his sick, small lungs on the vent outweighed the cons of the trach. He did have valid points. But, this mamas heart sank as the possibility of the decanulation and all that goes with decanulating him hangs in the balance. Its not officially off the table as we need to talk to ent and his vent doc yet. Gabriel's lungs are just so small and so sick yet. I want whats best for Gabriel and I am trying to balance that with losing all the bells and whistles. I am also not leting go of the hope.

On another note Gabriel decanulated in the Picu one morning while I was coming back with breakfest from the cafeteria. Lets just say noone needed coffee after all was said and done.Because of concern on how much his neck had to be arched and a prior ICN concern there were flex films done and there is instablity concern with cspine-1 &2 and more films will be done in 6 months. We can arch him to do his trach changes etc. But, we are not to force his face down and forward. He can do it himself. They are concerned with where the hole in the back of the skull and the nerves that run through it. If we notice he can't move his legs, etc to call asap.

I am so glad to be home and so is Gabriel. Gabriel missed his siblings. Too bad he decided to professionally visit his extended family ALL of his siblings February break. We will look forward to April's mud season break and all the time in between/after. My little man likes to keep things interesting and keeps his mom eating lots and lots of Chocolate. Off I go to do one of his twice a day steroid neb treatments to help keep him home.

If this is confusing or you don't understand feel free to ask questions. I know I am exhausted and probally not making much sense in my writing right now. (also a little down) Thanks