Ricky's home & update!

I've been putting off writing this note because while it also has lots of good news, it also has bad news. Some of it is very technical, so I apologize if it's too complicated for some of you! This is not to put you down or anything -- I just know that when it comes to Ricky's health I tend to talk in very technical terms. :) If you have any questions please feel free to email me.

I met with Dr. Conrad, Ricky's pulmonologist, on Sunday (Ricky's birthday), while he was still in the hospital. Here's what she said:

* He's going home on Pulmozyme (have to be 5 for insurance to pay for it). This is a drug that has come out since his birth. It is a special inhaled substance that actually uses enzymes to thin the secretions in the lungs.

* He has a secondary condition called broncheactasis which was found in a lung CT last Tueday. It is an inflammation/tightening of the large airways in the lungs.

* Ricky has advanced lung disease for his age. His sinuses have a lot to do with his problems.

* He is probably going on ibuprofen therapy for the inflammation in his lungs.

* Yesterday he had a pH probe test that tests for acid reflux. We found out he doesn't have reflux! He also had a sinus CT today that showed that he does have some sinus problems still.

We have appointments with the ENT (sinus doc) and pulmonologist (lung doc) two weeks from today. I imagine they're going to talk about sinus surgery sometime in the near future but I have some ideas for opening the sinuses up without surgery that I'm going to try between now and our appointments.

We got discharged today after lunch. They pulled Ricky's PICC line (special IV for those who don't know) which was really icky and neither he nor I was able to watch. We got discharge instructions and prescriptions and picked up our Pulmozyme at the pharmacy. And we were out of there!

We went right to the boys' preschool and picked up Andy. Ricky was really excited to see all of his friends and have snack with them. And he's resting well tonight. I don't understand it, in the hospital he was SO resistant to doing his ThAIRapy Vest, whereas back at home he's as amenable to it as ever.
SHEESH!

That's it for now...