June 22, 2012

I had a meeting with the docs on Wednesday June 19th and care team and
it was decided through the last week that there is not much else we
can do to treat Ajay medically. He will continue to be monitored with
cpap and high flow oxygen, and hopefully be able to wean off high flow
in the next 2 weeks. At that point we are looking to take him home "as
is". We have had Ajay one full year now, and in that time have spent
the last 6 months combined in this hospital. At this point, we are not
sure how much longer he has with us. He won't be able to tolerate any
other surgeries, so we are not going to tackle fixing his airway,
trach or diaphragm, hernia, or motility issues, and of course the
constant vomiting will also remain an issue. GI has investigated as
far as possible only to find that he has motility issues. If more
tests were completed with radioactive dye, and they did in fact find
the issue, they would not operate due to his weaknesses medically. The
team feels that he wouldn't tolerate another procedure with a positive
outcome.

So what does this all mean? We are going to live as normal as
possible, with certain limitations, but figure out our new normal.
Ajays life cannot be predicted nor changed. So we are going to live
one day at a time, and make the most of every day. The doctors gave
grim hope while others feel there is hope....either way, Paul and I
know that we have done everything in our power to give Ajay the very
best medical care. We feel Ajay is a strong boy who has overcome all
odds, and we also know what a fighter he is and always will be. No one
can say how long he has and as hurtful as it sounds, I am realistic.
Medically he remains a very fragile little boy on the inside but on
the outside, he laughs, plays, and signs new signs daily with love and
affection and attitude like most 3 year old toddlers. Those are the
things we are focusing on now. He is happy, loved and well cared for.
We're going to continue to love him to pieces :)

The plan looks like this...
week of june 19th high flow of 4, week of june 28th high flow of 3,
then 2 over 4th of July and simular levels then to room air at normal
home levels. With weans and gains in strength we will head for home
after that, if all goes well and Ajay can tolerate the weans. If not,
our last resort will have to be a tracheostomy. We will definitely
have another team meeting to discuss further options if needed.

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....