March 20, 2013 Take 2:

Nothing too exciting happened yesterday for rounds except to say they were still planning on extubation today. They did tweak his ventilator settings a lil and RJ seemed to tolerate that fine. He was more dingy on the monitor for his saturations during the day which was not normal for him. We thought maybe it was b/c they changed the ventilator settings or b/c he had gotten his 2 month shots on Monday. We left mid morning to get some things accomplished at home and when I called back yesterday evening I got some answers. :) Turns out they got an x-ray to check his lungs since he had been so dingy with his saturations. His breathing tube needed to be repositioned and his belly was full of poop!!! At his 6pm care time, he ended up filling 3 diapers full of poop that weighted about 71grams!! So with all that he lost about an ounce of weight, but felt much improved. We came back last night to give him a bath. His oxygen requirements were better and he hadn't been so dingy.
This morning we were skeptical about him being extubated, just b/c this has happened before and not worked. Clinically both the PA and the MD felt he was ready for extubation (removal of the breathing tube), so we said we were cautiously onboard. About 11:10am his breathing tube was removed!! They taped his feeding tube to his lower lip so it wouldn't get pulled out and taped on the new NIPPV tubing. He was feisty and couldn't seem to get comfortable after the switch. He kept turing his head back and forth. At one point both Robert and I had our hands in the isolette putting pressure on his back and head and holding his lil hands. It seemed to calm him down for a lil while and then he'd get mad again. When I changed his diaper I asked the nurse to re-tape his feeding tube to the NIPPV tubing so he could have full movement of his tongue and mouth. We repositioned him and he was much calmer. The PA called us a lil while ago stating that the repeat chest x-ray and blood gas looked good and they had even weaned his FiO2 (oxygen) requirements. We are hoping since he is multiple pounds bigger, he's more developed internally, he's got the steroids and max diuretics on board, that he will stay extubated this time. Now we just have to let him be still as much as possible the next couple days as he gets adjusted to the new settings of the NIPPV. I've been fighting a respiratory cold thing, so haven't been able to hold him the past couple days. It really stinks on top of what we are already dealing with. I blame ACLS for pushing me over the edge. Anyways, please pray hard that RJ can stay extubated this time and we can start making progress towards discharge!!! We are a few days over a month until his actual due date of April 24th. We are currently anticipating going home near that date or later due to his current course of events. No one has mentioned any official dates to us yet. We are trying to just take one day at a time.
Thanks again for all your prayers and support!!