Sleep Study

Is that not the saddest picture you have ever seen?

It took everything I had to not cry during this process. Getting all 34 probes on him was so sad! At the beginning he was fighting it. I kept telling him to "be strong little man and hold still". About half way though he did just that. He sat still layed his head on my shoulder and just cried. Didn't fight it and that is when my heart broke. To be honest I am tired of him having to be strong and do hard things. My heart hurts thinking about all he has to do.  For some reason this was so hard for me to watch him go through. Not that is caused him any pain or anything, but he hated it and that was enough for me. 

Previous to this he had only slept with his trach capped of for about twenty minutes two different times in the car and one short nap at home. I had no idea how he was going to do and was a huge ball of nerves. This whole decanulation thing has been so hard for me. It is the first time during the last two years that we have ever had a date when this would be over. I honestly cant decide if it is a good thing or not. Maybe if I was more confident that it was actually going to happen I would think differently. The first thirty minutes he was asleep were not so good. He was sounding wheezy and coughing. I was going to walk out in the hall and say we're done, this isn't going to happen, and head home. I knew I couldn't do it before saying one more prayer. I got on my knees and held his hand and prayed harder than I had in a long time. My prayers (and many others) were answered immediately. He seriously flipped a switch. He was calm and sleeping peacefully the rest of the time he was capped.

They capped him and monitored him for half the night and then un-capped and monitored him for the rest. They will compare how he slept and whatever those 34 probes monitored both being capped and un-capped. There were zero monitors in my room so I have NO idea how his saturation levels were or anything. It was making me crazy! The tech came in our room and flipped on all the lights at 5:55 am and said your done. Seriously lady! She ripped off the probes, Carter pointed to his stroller, and we were home by 6:30 am. The thing that drove me the most crazy is that the Tech couldn't tell us anything! We most likely wont know anything until Wednesday, which is the day before we are supposed to decanulate. To say my stomach has been a little off would be a big understatement. I'm dying!!!

To be honest I think I would be more surprised at this point if he does get decanulated. I have been capping him some while he sleeps since the study and am not totally convinced that he is ready. His saturation levels never drop they are always in the high 90's, but every once in a while he will do this thing where he makes a gasp and has to catch his breath. Who knows though. Since he has never slept breathing out his mouth and nose I have no idea what his normal is. If the Doctors don't think he is ready a huge part of me hopes that it is because something needs to be fixed and not just more time. I am tired of "giving it time". 

Dear Patience, I need more of you.

On another note when we went to the ENT the other day he said that Carter's tubes need to be replaced and "we might as well do it when we decanulate he will already be asleep". He then went on to joke about how almost everything he went to school for he has practiced on Carter in the last three months. I jokingly said "I'm glad he can keep you current". Obviously he was exaggerating, but seriously this kid has been through the ringer. Have I mentioned I'm tired of it?