Just to let everyone know it is still boring around here. For all out there who are not frequent readers, boring in my life is incredible. When I say boring in this sense I mean that nothing eventful is happening with Annabel. We are staying in, resting, playing and eating to put on the much needed pounds she has lost over the last few months.
I will post just a quick thought here. Remember this is only a thought, not educated or medically based at all. Since we have been home Annabel has not needed any oxygen or her bi-pap at all. I have hooked her to the pulse ox machine for most nights. She is having no desats in her levels. We noticed in the hospital she was not needed the machine and I attributted this to the fact that she wasn't sleeping soundly with all the noises from PCU. Since we have returned home she is sleeping 11-12 hours nightly, not waking unless her diaper is wet. (Oh, how I love wet diapers) She only makes a small squeak and I run to change her so she really never wakes fully. Here is the uneducated, not medically based thought. Could Annabel have been so full of gas that this was pressing on her lungs, that was compromising her airflow or how much her lungs could have expanded. We have to remember her diagnosis was way too much bowel that just stayed full of air and lots of food that couldn't move through it.
On a couple ER visits the doctor commented on that she was so full of gas that her lungs could not fully expand. I had mentioned this to pulmonary and GI but it was always shot down with a no way! If you could see the size of her flat little belly now, it might make more sense. So for whatever the reason, I am so very grateful and thankful that the surgery has done well on her gut and that if this is contributing in anyway to her not needing oxygen or her bi-pap machine I am so happy.
If this pattern continues I will do research and see if anyone else has experienced this. It is a shame to place a child on bi-pap if it would not truly be needed. I guess a great measure would be to have a sleep study done again but since we can't get the follow up until Aug 26th, I guess we will just wait. I will try to follow up with some pictures today.
Disclaimer: Please don't base my intelligence totally on this post. While being so bored my mind thinks way too much about why some things are happening or not happening. She I told you I was bored!!!!