Update... feeling a little defeated

One of these days I'll get around to posting a ton of pictures, but they are all still on my camera. So for now I will just let you know what's been going on with Brant.

Monday night (Oct. 14) we attempted to do his 2 night oximetry test. This is where he would sleep off of oxygen for 2 nights and his monitor would save the information & send it to his doctor down at children's and we would get a yes or no answer to getting rid of the oxygen completely. Well it lasted all of 20 minutes. His sats were not good. When I finally got the monitor on in a good spot he was at 94 (they don't want him below 92) and then slowly but surely it dropped down to 89 and he wouldn't come back up from that so I put him on oxygen and called the on-call pulmonary doctor and she said to put him on oxygen for the night and call in the morning to talk to his regular doctor. We did that and she said to leave him on oxygen for another month at night and we'll try the oximetry test again then. Fine. Okay. It's just at night, we can handle that. But a little sad because I was fully expecting to be done with this this week because of how well he has been doing...

And then today. I decided to hook him up to the monitor when he took his afternoon nap at about 1:30. It was a little low and then it got lower... and then it dropped. He came back up right away but I put him on oxygen. I'm really nervous now. I didn't have him on the monitor too much when we were weaning him from eating and nap time because it was SO hard to keep it on and have it not go off all the time because it couldn't read anything. He was always in the range for his sats never dropping below 94. I'm hoping that maybe he is just getting a cold and thats what is causing the low sat. levels. But in the back of my mind I'm thinking crap, was he sating low this whole time at nap time??

I'm going to attempt to keep him on the monitor the rest of today and see how it goes.

So anyway it'll be at least another month on oxygen. Yesterday marked him being home for 6 months! It's a little sad to see that too because the NICU staff all thought he would need oxygen for maybe another month, if that, and here were are six months later still dealing with it.

We go down to Children's November 21 next. They cancelled his ECHO because he isn't off oxygen yet. Though I wish they would still do it to see if anything is going on but they want to wait...