Final Update for Today

We are home now. Josh is tired, we are all tired. It was a long day. I'm feeling a little down I suppose. It seems like we didn't get the best news today, but it wasn't bad either. It could be worse.

One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.

The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)

His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.

So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.

We also will be returning to UF in two weeks to see Dr. A (his cardiologist).

He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.

He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!

Thank you for your support for Joshua and our family.

Hug each other and do something nice for someone else.