June 11, 2012

Sorry for the delay in updating all of you. Lots of setbacks day in and out as Ajay has not been able to wean further off the vent settings. this last week, he has only been able to wean by 2 points since last Thursday, and today is back one setting to increase his oxygen flow. (variances occur between oxygen rate, flow and pressures) One night is good, and they push to wean another notch which results in2-3 days of termoil for Ajay and recovering from wean. Not much else going on here but waiting and watching as his body continues to make adjustments to breathe, take in oxygen and be able to maintain good blood pressures, respirations, and heart rates. Aside from his breathing issues, he plays and watches Thomas the Train, plays with his ipad, is bossy and just a riot most of the time as he signs for his passion "water". (Because of the frequent vomitting we had to limit fluid intake) He looks so good and its hard to imagine how difficult it is for him to breathe without asst. or have adequate pressure to his lung. He still amazes me everyday. He loves his nurses and interacts with them using new signs for each of them. They are so special to Ajay (and me!) and love the abundance and patience, as well as continued support of our new friends. The odds are always against him, but he continues to amaze everyone.

We still have chronic vomitting issues and further tests revealed everything is "normal" from a GI standpoint. The wretching and vomitting occurs frequently throughout the day and no one can seems to make any sense of it. Day by day we make adjustments and try very hard to make sure he is comfortable.

The doctors are hopeful and feel that although a trach was discussed, they all feel that Ajay needs more time to adjust, heal, and become stronger on his own timetable.

So that's just what we'll do....