I apologize for not posting the pictures, I'll get those up soon. For some reason Aidan began crying/storming Saturday after we got home. It lasted from about 2pm until just after midnight when I guess he finally got so exhausted he couldn't cry any longer. He woke up Sunday morning in much the same way. We tried everything to calm him, but nothing worked. He acted like he was hurting and we just couldn't figure out what was going on.
Aidan did calm down long enough to go to his hyperbaric appointment Sunday morning, and even slept through the session. On the way home, though, he started crying again. We finally decided to call his doctor and by the time we got a call back he was starting to settle down. He was quiet and slept for almost 5 hours Sunday afternoon. He woke up and it was like someone flipped a switch and he started storming/crying again. We called the doctor back and she came out to the house, this time to see Aidan in the midst of the storm so she could see what was going on.
There wasn't anything obviously wrong with him, so she sent us to the hospital to stay overnight so they could run some tests to rule out any infection or anything like that. Go figure that he would calm down when we got to the hospital and he went to sleep. Had the nurses and other staff not had to mess with him, he would have slept through the night. He only had one brief crying spell about 4am Monday morning and the rest of the time was quiet.
All of the tests came back normal, so we aren't sure what is causing the sudden onset of the crying. To me it looks like he's in pain. The doctor sent us home with something for pain to give him as needed. We have a follow-up appointment with the ENT this afternoon so they can take a look at the trach stoma and make sure it looks okay. We're not sure if maybe that is causing some pain or discomfort for him. It is always covered by a dressing so it should be okay.
Anyway, I don't know that this would be a set-back. Aidan's oxygen sats are really good. They're usually between 98-100%, so as far as not having the trach goes, he's doing great. Who knows what the other is. Maybe it's just a phase. I hope it goes away soon, because I can't bear to listen to him crying when I can't fix what is wrong. Heck, I don't even KNOW what is wrong.
Please pray that whatever is upsetting Aidan or causing his pain is resolved soon. He's been doing so well, I hate to see him like this. It just breaks your heart to hear him cry.