Ahhhhh

We kinda feel like screaming around here. Carter is feeling better. He is getting back into his normal sleep patterns again and is smiling and moving around. The problem is that his blood gasses aren't showing that. A blood gas is basically a sample of his blood that tells how the oxygen and everything else we need in our bodies is working. One of the most important numbers they look at is hi fiO2. It needs to be around 40. When we first went in his was around 60 and it now is around 52-55. They ended up putting him on cpap and bipap a machine that puts positive pressure in his lungs or basically just a continuous flow of air. They have been "experimenting" with his time on and off the machine to see if it would improve his blood gasses. They were almost exactly the same on and off the machine. So after last nights gas being the same they say well we will just continue to try and figure out what he needs and "if we need to we can always just give him a rate". They say this like it's no big deal. A rate means he is back on the ventilator and has a machine breathing for him. They think he has tracheomalicia which is a floppy airway. Why the heck are we just figuring this out now. I have been going to doctors appointments 2-5 days a week for seven months and nobody has noticed this!!!!! I am having a hard time with this one. My son does not need a machine to breathe for him he has been breathing on his own for seven months! What this also means is that if he does end up needing cpap, bipap, or the vent at home we will have to go to Our Children's House for up to two weeks to learn how to use the machine. Remember the half way house that we tried so hard to avoid after his trach surgery well this is the place. We feel that we have always handled everything with Carter's stuff pretty well, but this one is definitely throwing us for a loop and we are having a hard time swallowing it if you can't tell. This is the time we need to start dropping all the medical stuff and progressing with the developmental stuff. We do not want this to happen. It is a HUGE step backwards. It just doesn't make sense Carter seems so much like himself. His breathing is not labored anymore and his lungs are starting to sound clear again. I am not sure what is going on, but I sure hope we figure it out soon. This has been a hard one. I HATE having my baby in the hospital. We all need him home it feels so wrong without him here. Boston keeps asking where Carter is and "is he never coming home?". I hope they can cut the "experimenting" and figure it out because it's driving us crazy! I will try to do a better job updating. Thank you everyone for your love, support, and prayers they are much needed and appreciated.