Yes, he's home. Whew. Shortest hospital stay ever at 5 days. Time to
catch up on sleep now! For all of us!

Looks like Ricky might be admitted today. His cough and wheezing are worse than they've been in a really long time so it's almost positively going to happen.

But hey, that's 2 years since the last time he was in -- not bad, not bad at all!

I will send an update later.

Ricky is doing great. We are coming up on 2 years out of the hospital and he's just had a little bit of an increased cough and some sinus troubles that have resulted in a referral back to the ENT. Nothing major,though.

Next weekend, on September 11, my fiance Dave and I are getting married. We are all (including the boys) very excited.

Ricky's health has been great. No CF problems at all lately! We have
just been keeping up his maintenance medications and breathing
treatments and he's been fine.

He has had some problems with his bipolar disorder lately (rages etc.)
but we hope that a recent medication adjustment will help with that.

Ricky is doing okay right now. After a rage incident on the weekend, the psychiatrist has adjusted the dosage of one of Ricky's meds, which we hope will help him. This will make him sleepy for a few days but hopefully in the end it will make things better.

As far as his CF, Ricky's doing fairly well. His cough is a little worse at the moment, but this is par for the course as he just recently started his inhaled Tobi and also usually coughs a little more during allergy season. He's been exceptionally good about doing his treatments lately!

Ricky's doing great in school also. We recently had his annual IEP meeting and found out that he has an auditory processing learning disability, for which he will receive some accommodations. He is a solid reader now, and he continues to score straight Bs in school and we are so proud of him!

We have no day care for either of the boys, and no school for Andrew until the school district finds an appropriate (ED) program for him (he is currently receiving home instruction). However, with Dave's help, we've been able to stay home with the boys as needed and take them to their appointments, so for now it is working out!

Today in the middle Andy's IEP meeting I got a call from the boys' day care center that Ricky (whom you might recall is bipolar) was wreaking havoc so Dave took off to get him. This is the second outburst in a week. May be time for a med change. He's repeating old patterns. Screaming, running away, calling nasty names, biting, hitting, punching, kicking, you name it. Right now he is exhaustedly sleeping it off as usual. Anyway, the bottom line is that the day care director told Dave that the boys can't go there anymore. I am still waiting for her to call me. I sent my mom to pick up Ricky's glasses and I'm afraid my mom's still stuck there talking to the day care lady. Poor Mom.

I don't know what we're going to do. Dave is an RN and he works three 12 hour days. So he can take care of Andy (who currently has no school) and pick up Ricky from school on the days he doesn't work. But it looks like my work schedule is going to have to change if we're going to make this work. I don't see how we'll find a day care that can take care of them. There's just no way. I can reduce all the way down to 20 hours and still maintain benefits but my income will obviously suffer. I've got to get this all down on paper and figure it out.

Well, I guess that is it for now. Definitely a week of ups and downs. But largely downs. On Wednesday I felt like just curling up and going to sleep and not waking up til this is over. Urgh.

I took Ricky to the pulmonologist on Tuesday for full pulmonary function tests (his first time) and a visit with the doctor. He also had his blood drawn and sputum collected for a culture. He was GREAT through everything (didn't even cry during the blood draw)... I am so proud of him. I also introduced Dave (my fiance, who incidentally is a pediatric RN) to everyone there and they were pleased to meet him.

The PFTs came out great. I called today for more details, and the doctor says there was a little air trapping here and there but nothing serious, and it was definitely relieved with a breathing treatment. It actually sounds like she was very impressed with how he is doing.

He is also now 4'5", which has put him off the top of the height charts! Although his weight on the charts is still average, it dropped a few pounds, which is not unusual considering he had the flu a few weeks ago and didn't eat for 3-4 days. He did have Tamiflu when he was sick, which we think shortened the length of his illness.

Ricky has had mold (aspergillus) growing in his lungs for some time and has been on medication (itraconozole) for it. The doctor is willing to let him come off the itraconozole after his IGE blood level has been below 200 for three months. I just got back his results from Tuesday and the level is still in the 200s, but lower than last time. So we are on the right track.

So far his sputum isn't growing anything, but we'll know for sure next week. I'm sure he will grow Pseudomonas, his usual bug. I hope nothing else! We will also get the rest of the blood test results next week, and we'll be going back to the clinic in 3 months.

Last week, we saw the psychiatrist. Ricky's been doing really well in school and behaviorally, especially since Dave, my mom and I started using 1-2-3 Magic for discipline. So his psych meds are staying the same and we will be going back in a month or so.

A few weeks ago I requested learning disability testing for Ricky (through the school district), and that is in progress.