Repost of today's Facebook updates

This is Mark working from home to spare Gina from typing with her thumbs until she gets a keyboard to work with. This is the series of updates on John that she put on Facebook for Wednesday December 1st.

7am. The sky is gloomy but inside John's room the glow of friends and pastors and dad lingers over a little boy who is sleeping peacefully with vent settings that are at extubation levels, beautiful numbers on his monitors and a mommy who keeps falling back asleep.

10am. The sun has come out, the methadone has obviously kicked in and John is able to be awake without tons of fear and anxiety but still able to pout and make faces with things he doesn't like and then go back to resting peacefully when left alone again.

11am. Biopsy is at 2:30p. They are continuing to change around Meds and will be turning the vent to a cpap pressure support system in a bit, letting him do the work of breathing through the day and night to make sure that he is strong enough to have the vent removed in the morning. He is also putting out just a smidge more urine and so they are excited to see him try being off dialysis in the next day, more or less.

1pm. Huge bath for John and he is finally resting, new meds seems to be settling in well. He had his first trial on cpap mode and needed to step back just a bit. So at this point the vent is set to give him 8 breaths a minute and he is initiating his own at 22, so he's doing fine but just needed to take this in a little smaller baby steps that thought.

4pm. The scope and biopsy is done, the doc is optimistic that what he is seeing is damaged mucosal layer healing but of course only the biopsy will tell us for sure. He did explain some fascinating things like all nerves to John's intestines wer...e cut and there are no new connections to the new bowel which will mean that he will truly be able to eat without hurting anymore. The other interesting tidbit is that he lymphatic system that attaches to the bowel is also not surgically reattached but that given a couple months will reattach itself, this is what lets a bowel absorb fat, so for a while he will have to get very little fat via stomach. John is again sleeping quite peacefully and even though he was anxious during the scope it seems to have passed and let him be for now.

6pm. John's trial for getting off the vent today didn't work, he is so much stronger than yesterday but still just not quite ready, so we will start again tomorrow and for tonight his job is to rest and heal more. I am not discouraged by this, I... am actually heartened by how much they are talking about John being in charge of these things, which of course means nothing other than God Himself is working in there and this is on God's timetable not ours or theirs, blessed be the Name of the Lord who knows what is best for little boys and when they need things!

10pm. John is ending this day with one while bank of IV pumps removed, he's down to 5 total running at this moment, 1 tpn, 1 antibiotic and 3 that work the dialysis machine, and only 2 others even still in his room. He is barely dozing and has ju...st had the longest awake period since surgery and I swear he was mouthing 'home' to me, I told him daddy was home and that he would get to go home again too and he was comforted by that. His vent settings are still at the level that means he will get to try being off if again tomorrow and they are unhooking the dialysis at 8am for 24 hrs to see if he will make it without it. The tightrope still stretches out before him and he has a long road and lots of recovery to do but for this night he seems to have his feet firmly planted on it and facing forwards :)