Joey Boot Camp

I spent the night at the hospital alone with Joey and he requires that someone wake up to suction him every other hour. It's really quiet in the wee hours of the morning though, and it makes me sad when one of us is not able to be there early in the morning with him.   

The next day though, which was today, was a bit traumatizing. Joey desaturated into the 50s very quickly. We almost didn't move fast enough, because that almost never happens with him. He decomposes pretty slowly.  Once we figured out the desaturation was real, he was actually turning blue. We suctioned him and got a good chunk out, and waited for him to come back up. Daniel turned up his oxygen and he bounced back. It was extremely scary.

Not too much longer later, he started to look really uncomfortable, his heart rate started to rise, and his head started to sweat.  Sometimes when he does this, we think he's teething. This time it was different because his respiratory status changed and he was requiring more oxygen. We cranked his oxygen concentrator to 10 liters and gave him some tylenol, in case it was a pain management issue. An x-ray was taken and Dr. Hatch thought that he was experiencing some adelectisis in his upper right lobe, which is really common.  The only remedy was to make sure Joey is clearing his secretions and to get that boy moving.  We just have to be very diligent about getting him in his chair, having him sit up, and moving him around. It's challenging to do this in the hospital due to lack of space and room for all his toys. Once we get home, I plan to do more of this movement with him.  I also put him on his stomach today.  His oxygenation improved and I was able to wean him closer to his baseline-not completely but closer. His heart rate is still higher than normal though. I really don't know what that is all about, but I hope he improves overnight.

Bottom line, today was scary.  I watched my baby turn blue and the status of his health was dependent upon how fast we moved.  I would prefer not to live such an "exciting" life, but the reality of it is, this is my new normal. I would like to think that I can prepare myself for every crisis imaginable, but I just can't. Now is the time to trust God more than ever, because the only security I have is in Him. There is no security in tomorrow or what the day will bring. We can't make an idol out of our security.