The last few days have been rather low-key and pleasantly uneventful. Time has been spent mainly focused on Elias and keeping him active. He has the daytime/nighttime concept down, but the nap time in the afternoon has been rather challenging, even when we play hard during the morning. When we put him down in bed regardless of nap time or bed time he rolls and rolls and gets tangled in his leads, G-tube and humidifier tubing. It is like a ritual to do this about 30-50 times before he goes to sleep, unless it is nap time then it is just fuss and yell until he can not go anymore. It is rather humorous most of the time, but it does require staying right by the bedside for flipping & untangling duty.
We encountered our first issue with suction catheters on Monday. We opened our last box of 50 on Sunday, so Katharine called to have them send more. While she would not call it a hard time per say they were a little stern saying that they needed a letter of medical necessity...what? It is his airway for God sake. The previous month we used a little over 900 catheters, more than twice our typical use of 400-500. We had no issues getting them last month so why now all of the sudden? The Nurse Practitioner for the Pediatric Surgery Department wrote the letter for us on Monday so hopefully that will take care that issue.
The most amazing thing happened, well in my opinion on Tuesday afternoon. Elias was in his crib and suppose to be napping. I watched him as he eyed his teddy bear that was in the corner at the head of the crib. His bed is slightly elevated with pillows for feeding and aspiration precautions. I watched as he crawled up the bed, about 2-1/2 feet grab the teddy bear (which is almost as big as he is) and drag it back down to where he normally lays. He wanted to play with the bear and by golly he was going to get it. I was too amazed to even think about grabbing the video camera. It felt good to see him do that on his own.