Took Ricky to the clinic for spirometry today. It's somewhat better and somewhat worse than two weeks ago, depending on which part of the data you're looking at. He's going to continue on his new medication and in a month we are going back for more spirometry and another iGE level (that measures the allergic reaction in his blood). He had a blood draw today, a trough level for the new medication, and he did perfectly. I am so proud of him.

We were out geocaching yesterday (www.geocaching.com if you don't know what it is) and were on a kind of a hilly hike. Suddenly Ricky started sitting down at every opportunity, being really quiet, etc. I asked him if he was okay. Dave asked him if he had a rage coming on (sometimes he gets really quiet when that is about to happen). He shook his head.

After we found the geocache, and were on our way back to the car (long hike though), he said he felt dizzy. I had him sit on a fallen tree and put his head between his legs. Seemed like he was having some breathing trouble too so I gave him a couple of puffs on the inhaler. When he got up, after a while, he said he was still dizzy and had a headache. Dave offered to piggyback him up the hill but he said he was okay. So we just walked really slowly up the hill and back to the car. He sat for a little while on another log next to the car, dizzy and headachey, and said he was really sleepy. Then he got into the car and felt a lot better within about 15 minutes.

Dave's theory (he's a nurse so he knows a little more about these things) is that Ricky, who has been a little sick (coughing and wheezing a lot more lately), had a O2 saturation drop from all the hiking, and got dizzy and headachey and tired from this. A little while later he was able to recover after resting.

This has never happened to Ricky before, so I know I sound kinda naive. :) It kinda worries me but I realize that if he's sick maybe we shouldn't do these long hikes (even though the exercise is good for him).

As I mentioned the other day, Ricky has had a bit of a rough time of it lately with his CF.

Yesterday the CF nurse coordinator finally called me back and let me know that Ricky's IGE level (measures his allergic level -- usually a high number indicates he's reacting to mold in his lungs, such as aspergillus) has spiked over 500, which is the highest it's ever been. So the doctor wants Ricky to start taking Sporanox, an anti-fungal medication that he has taken in the past.

Two problems... 1. The insurance is balking at paying for this expensive medication (it's $290 for a 30 day supply, but that's actually a lot less than many of his other medications) and is requiring prior authorization. Luckily I have some left that's not expired, from when he was taking it before. 2. It is supposed to be taken at least 2 hours apart from any antacids. Ricky takes Prevacid in the morning and at night. So if he's going to take Sporanox twice a day that means he'll have to take the morning dose at school, a couple of hours after breakfast; and at bedtime, hopefully a couple of hours after dinner. I have put a call into the nurse about this.

Good news: If it's the fungus that's causing his problems, he hopefully won't end up in the hospital, since IV antibiotics wouldn't do a thing for him anyway. If we can nip it in the bud with anti-fungals (which he has responded to well in the past) we should be able to get through this.

He's quite a little trouper.

I forgot to post about Ricky's clinic appointment on Tuesday.

First of all, good news: Ricky (9 years, 2 months old) is now 141.2 cm (4 ft 7 in) tall, which is 75-95%ile, and 33.5 kg (73.8 lb), which is 50-75%ile. This is outstanding for a kid with CF. To keep up the good work, we got a whole case of Nutrin with Fiber shakes.

Not so good news: His lung function is down (I am not sure of the exact numbers). So he is starting on an Advair inhaler and we are going back for spirometry (lung function testing) in two weeks. If it hasn't improved by then he'll have 2 more weeks of Tobi. After that, if still not improved, we're looking at IVs. I'm confident that he'll improve just fine, as he always has before!

He coughed up some mucus for culturing. Ricky also had blood drawn for an igE level (measures his allergic reactions -- we'd find out if he could be growing mold in his lungs). I'm proud to say that he was very brave.

Edit 1/29/05: I talked to the respiratory therapist last night and she said Ricky's FEV1 was 63%, down from 75% last time.

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.