Bowl by the Bay

Ricky in the newspaper
Originally uploaded by Beckerbuns

We were contacted by a friend at the South Bay chapter of the Cystic Fibrosis Foundation earlier this week because of an event that was to happen today.

The first Bowl by the Bay is happening here in San Jose this Sunday. It's a football game between Fresno State and the Air Force Academy. The game organizers picked CFF as their charity of choice, and so they had Ricky and Andy and some other kids with CF and their siblings come to their press conference/party this morning.

They gave away TONS of stuffed animals, hats, watches, team programs, t-shirts, pennants, you name it! The boys got TONS of stuff and because Ricky was having a conversation with one of the Fresno players, Tim, #51, who is apparently one of the star players, tons of pictures and video were taken of the boys. We also got 6 really good tickets to the game!

I was actually interviewed by a guy from Fresno's Fox channel 26, and the interview will appear on their 10 o'clock news tonight. If anyone out there among our friends is from Fresno, or knows someone from there, could you tape the interview for us? It sure would be great. Please let me know! I think we might also be on the national Fox Sports Channel, so if anyone's able to see the coverage on there, we might be featured on there, and a tape would be great. Thank you so much!

We were overwhelmed with the generosity of these teams and organizers. The football players were so sweet with the boys. We got lots of pictures (Polaroid, taken by one of the organizer guys, and regular, which I took myself) which we'll put up on the family web page soon -- look for them. This was a terrific event and I just wish more of the CF community could have been there to enjoy it!

Ricky's ibuprofen thing

I can't remember if I told you guys. Ricky's ibuprofen levels from his hospitalization came back this week as sub-therapeutic so they upped him and told us the dosage. It will be 550 mg twice a day. That's 5-1/2 teaspoons twice a day of Motrin or generic Motrin! As you can tell that is a ton of ibuprofen, and it seems dangerous. But they are sure this is the right dosage to bring down the inflammation in his lungs due to bronchiectasis -- so it is good new for us. I went out and bought two three packs of Kirkland ibuprofen at Costco this past week -- $7 per package. Still looking for Motrin coupons because Motrin comes in a bigger bottle if you get it at the right place. I think we'll be going through a 4 oz. bottle of this generic stuff every few days, so it could get expensive!

Ricky's two doctor appointments today

We saw two docs today, the lung doc and the ENT.

Lung doc, Dr. Conrad, says his lungs are sounding terrific, and his nose doesn't look too bad. He had gained 4 pounds in the hospital and has since (in 2 weeks) lost 2. Oh well, win some, "lose" some I guess. We talked about his bronchiectasis (bronchus inflammation). She thinks the ibuprofen therapy will help a lot with it. The levels (to determine the dosage, since it will be high level and we don't want to give him a toxic or stomach-irritating dose) should have been back by now, since they were drawn
15 days ago (they take 2 weeks) but since they aren't back yet, we should probably have the information within the next few days. We go back in 2 months (this is a change, it always used to be every 3 months, but I guess "advanced lung disease for his age" makes a difference). Oh, he also tried doing PFTs (puffing into a machine that measures breathing capacity, which asthmatics are familiar with) for the second time! He still can't puff long enough, just 3 seconds instead of 6 but we consider it PFTs-in-training.

We hung around the hospital and had lunch and then went to the ENT. We waited AN HOUR AND A HALF in the waiting room before we finally got in. Then waited 45 minutes in there until the nurse practitioner came in to see us. She wanted to see in his ears and there was too much wax so she wanted to clean it out... which majorly traumatized Ricky because he's been through so many medical procedures lately. I finally convinced her not to do it. After all we were not there about his ears. About 15 minutes later the ENT came in, he's the substitute for Dr. Messner, who is on sabbatical. I swear this guy is younger than me. He spent all of 10 minutes with us. He did a side by side comparison of Ricky's sinus CTs. Bottom line is, Ricky doesn't need surgery! His right maxillary sinus is very packed with stuff and polyps, but
every other cavity is fine! Hooray! The doc is reluctant to do surgery unless absolutely necessary because of the bronchiectasis (great) and it being risky to tube him. So we don't even need to go back unless he starts complaining of pain, pressure, etc. or the other sinuses get involved.

*doing a happy dance* Glad things are looking up finally...

Ugh!

Now Ricky has that flu thing that Andy had (Andy is now well, by the way). This of course is bad news for Ricky. He's already at 102.7 underarm temperature, and feeling crummy, with dark circles under his eyes and everything. At least we are almost to the weekend. Just got to find somewhere for him to be tomorrow as I really can't miss work (still in my first full week at this job). The flu sucks! Andy and now Ricky get it...
And they're the ones in this family who have had their flu shots! Argh!

Ah, well, this too shall pass...