Repost of today's Facebook updates

Today has been a roller coaster, but we are concluding it riding a little higher and smoother than we began it with lots of track ahead.

8am John was awake most of the night but is at present really sleeping. He failed the midnight cpap trial in such spectacular fashion that I am convinced he is not only still the little stubborn little boy I've been raising but that once again he is fixing to prove that either he drives this bus or no one will. It looks like it is going to be a wild day.

9am Things are already some better this morning but getting to see the nurse practitioners and doctors will help or lol maybe not, but it will still be.

11am The nurse practicioners have come and gone. Even though John is so much smaller he still has a good deal of edema on his chest wall which makes them think he is not ready to be extubated yet. His fascia, the layer underneath all the skin, fat and muscle, under his incision keeps developing new holes and will need to be surgically repaired this afternoon. Other than that today and I would guess through this weekend is supposed to be 'benign neglect' in other word- leave John alone and let him rest and heal time.

5pm John's surgery went well. They washed out the old blood that had been oozing out for days, found a spot where 4 stitches that attached his old stomach to his new intestine had come loose and repaired it and was able to close up the fascia that had been sewed shut when he was swollen and was developing gaps between the stitches when he shrank.Coming back from surgery he did fine, but in the room he started to crash because his little body decided to do some massive fluid shifting and so his oxygen levels and blood pressure got very low again but with the quick moving and thinkin...g of the staff they were able to give him blood, fluids and such and bring all levels back up quick enough that there is no renewed concern about losing organs. I was very glad to have Diane and Charity here with me and to be able to call mark with the news that while it was scary for a bit it was better and John was recovering well.

7pm (Responding to other's comments) Jenn I'm not so sure about the amazing part, I just keep going from one thing to the next, one more hour one more day and Diane (Charity Baker's mom) it is such a blessing to have your daughter so close to me and all my friends and family as close as my phone or iPod.

8pm So the last bit of news that I have at the moment is the results from the biopsy and an answer to a question. Biopsy showed healing everywhere and little crips all over the place, crips are the buds that the villi grow from that absorb all the food in our intestines. The question was did John not being able to stay off dialysis give us any indication as to whether or not his kidneys will work again and the answer was no.


As of 10pm Gina is going back to the room to get some sleep and begin again in the morning. The only challenge through the night will be to keep John sedated enough to stop responding to every change going on around him. The doctors agree that for now John has gotten too aware of what is going on and is communicating his distress too well, and so they are changing medications to enable him to stay asleep and trying to keep things as quiet as possible around him.