Facebook updates for the 3rd and 4th days of Christmas

For these two days there are to be 4 calling birds and 3 french hens, but for us there have been a brother and sister-in-law, dear friends who have encouraged us and a pastor to speak God's comfort to us in our anxiety and hope.

Monday was a good day as a whole, but left us with unanswered questions that still concern us.

3pm Uneventful :) No bleeding, no dialysis, no crazy stuff. Not quite ready to get off the vent yet but his face just looks more him today and I have no way to explain why, just that he looks more right.

11pm And it ended with Mark holding John's hand and saying 'squeeze my hand buddy' and watching John's fingers tighten on Mark's.

Tuesday has been a little better, and in some cases the better has led to some anxiety of its own.

8am On the 4th day of Christmas, John's chest X-ray looks really good and it's time to try extubation, we'll know in a few hours if today is the exact right day.

Noon During John's first cpap trial of the day with his sedation completely off he got turned to his side which he breathes the worst on, had physical therapy and was examined by several people and wouldn't you know he freaked out and started hyperventilating and failed. So another cpap trial today but no thoughts of attempting extubation until at least tomorrow. We are not really disappointed just hopeful that he will be ready soon.

10pm. The second cpap trial was better but during it we also ended up having a discussion about sedation, drug addiction and why John appears to be able to have REM with his eyes open, drugs, go figure. At any rate his methadone and atavan were both increased and he has been marginally more content through the evening but just now settling down into actual sleep. I am unsure what tomorrow will hold as far as the vent and such are concerned but John continues to prove by little steps here and there and we are thankful for each and every one of them and for all of you.

John is awake enough at this point that he is waving his hands around opening his eyes and moving his mouth around to try and get the annoying tubes out of his nose and mouth. The team wants to leave their options open as to taking him off the ventilator tomorrow and so they are keeping him minimally but consistently sedated. Hopefully the nurse, who has become a dear friend will have a quiet night with our agitated little boy.