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Happy Birthday!!!!

Today we celebrate the gift of life! Ajay is 4 yrs old today and we can hardly believe this last year. In retrospect, he has overcome more than any human being Ive ever met, and is still filled with laughter and smiles. He is one amazing boy who triumphs each and every day being himself without any misconceptions. He is our little boy!

 

We have a celebration planned with family on Sunday doing what Ajay likes best, (aside from Angry Birds) playing skee ball  and bowling at a local pizza and  bowling/gaming center with Thomas the Train decor! We are hoping his day is filled with joy and feels the love we have for him on this special day!

 

Its been a quite the challenge being home with Ajay, now 3 weeks. Hes had some problems with medications, feeding, ,vomiting and the like. He has been to all his specialists and they have said that his heart and lungs are worse. He is on increased doses and more maintenance medications to keep his heart and lungs operating "normally".  Its scary to think that his time with us is more limited, but we are also aware that only God knows....and His timing is always perfect. We are devestated to know that Ajay isn't getting better, but also happy that we are together as a family (vs the hospital) for as long as Ajay has with us. His condition and medical problems won't go away but we can still live, love him and create memories along the way.

 

He won't be going to preschool this year because of infection risks, but home school is definitely in his future. PT, OT, ST will be coming to our home, to help facilitate his strength and improve his skills. His decline since arriving home was sudden but giving him the benefit of the doubt, he can do it! He tries so hard, and with feeding weight issues, water weight, and little growth, Ajay has found it hard to move around as much, and lays down most of the day. I am hopeful this too shall pass and we will be able to see Ajay slowly improve his motor skills with work and guidance. His brothers are his biggest cheerleaders and motivators.

 

Please pray for continued peace and strength for Ajay.

 

Home at last

Although Michigan has been my home away from home since April 10, I was looking forward to sleeping in my own bed :-)  Ajay has done well with the drive home, and actually clapped when I turned into the driveway. His smile was priceless.

Since arriving, he has been vomiting again and rather frequently. Every few minutes and then every 30 min. I couldn't figure it out and felt so bad. He has had less episodes in the hospital and wondered why he was vomiting again. Only this time, I knew it was different. I didn't know how or why but it was different.

I checked over the zillion meds he's on, and looked thoroughly at dose, solution, etc. And there it was. One of the meds we were giving him in the hospital was diluted in his feeds, only to see that it was not written like that on the bottle. I called the pharmacy and she phoned the hospital and got it straightened out. Only then to find the vomiting wasn't ceasing. The only other thing I noticed was the antibiotic was changed the day we left the hospital. He got cellulitis around his gtube site on Tuesday and was taking an antibiotic. On Wednesday he received 4 vaccinations, which the site of injection became infected as well. So they changed the antibiotic from one to another so Ajay wouldn't have to take 2 more meds.

I phoned my pharmacist on Sunday and she immediately called me back to say she thought it was indeed the antibiotic making him sick. Unfortunately the half life of this particular drug is quite lengthy, and would take a other 2 days to get out of his system. I was able to get him some anti nausea medication, but it only helped for an hour. Then he went right back to wretching and vomiting.

Its Monday 430 am, and have since stopped antibiotic and Ajay has stopped wretching/vomiting. I'm pretty confident he will just need a day or two to recover.

Discharge planning

I had the discharge meeting and were on track to arrange discharge planning. Lots of things to order , arrange and prepare, but excited to say we are tentatively scheduled to go home next week on either Wed. or Thurs. (If all goes well til then)

Ajay got up for PT yesterday and walked towards the door, and kept going! The nurses all clapped and honored him as he continued down the hall. :-)  lots of tears :-)  but happy ones as most of us here didn't think he would be able to walk out of the hospital. He did so well as he held on to his fisherprice shopping cart.

He will need lots of equipment and medical care at home, and will still need a wheelchair when going places like doc appts and hopefully school in the future.

update July 6, 2012

Ajay has made progress in the right direction over the last 2 weeks
and is on track for discharge soon! We are now at 3 liters of regualr
oxygen and Bipap (full ventillation for support with a mask) at night
for 12 hours for complete life support. We are having the discharge
meeting on Monday and will discuss a new plan. In the meantime, RT
will be providing gear this next Thurs for me to learn and become
familiar with so that I can take home the exact equipment when we are
released. It will give me a few days over the weekend to study it and
be 100% comfortable before leaving the hospital. Since the last post,
Ajay had a sleep study because I noticed he wasn't breathing when I
was here late at night. After bringing to the nurses attention on
several occasions, they decided to do an actual sleep study. The
results were more complex than I anticipated, in that he was diagnosed
with Obstructive Sleep Apnea. The amount of support he now needs is
more crucial then ever to keep him breathing at night when in full
restorative sleep cycles. His respiration's dropped to zero 3x during
the study. So, although he is doing well in the day, he can breathe
regular oxygen in the daytime with bipap close by if he starts to drop
in his oxygen levels and respiration's. Even though its one more thing
to add to the list of Ajay's needs, I am glad we discovered it while
here at the hospital.

If everything continues to go well, our meeting will be Monday the
9th, RT will deliver equipment on Thursday the 12th, trial run over
weekend and continue thru Monday the 17th, with hopes to go home
either Wed or Thursday July 18-19th. We have tons to prepare for but
we are both thrilled that home is now coming to fruition.

I will update further details after Mondays meeting with the team.

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....