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.