Friday, February 18, 2005

I took Ricky up to Stanford to see his ophthamologist on Wednesday. We waited almost an hour to see her and then she saw him for only about 15 minutes.

Good news! No drops. And his prescription remains the same. (He has glasses due to farsightedness, astigmatism, and strabismus in his left eye that has been corrected using the glasses.)

While we were at the clinic building we also dropped by the CF clinic and got a new Acapella Choice, the new Acapella device. It's easier to clean than the previous version (Ricky's got cracked which is why we got a new one).

Also had a conversation with the respiratory therapist about the new ThAIRapy Vest, which is smaller, quiet, and easier to use. For $6,000 we can upgrade to the new machine (we have the old one, and we've been using it lately because of the Acapella being out of commission). We have insurance that covers durable medical equipment and the RT said I should conatct the Vest company to find out how to get this upgrade. I sent an email this morning.

Tuesday, February 8, 2005

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.

Sunday, February 6, 2005

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).

Thursday, February 3, 2005

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.

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