Monday, July 25, 2011

CF Clinic Appointment

Froggy had her CF appointment on Friday. Our new hospital is WONDERFUL! They are very aggressive and want to do a bronchoscopy and GI scope. Because Froggy cultured pseudomonas and a cousin bacteria to b. cepacia (a while ago) they want to go deep into her lungs to search for bacterias that maybe hiding out and not showing up on her throat cultures. I'm not sure how I feel about it, because it is so invasive and they need to use general anesthesia. But I also feel like this clinic has a genuine interest in Froggy's well-being that I never felt with our old clinic. It will take a week or two before we receive the results of her latest throat swab and blood panel, so wish us luck on both of those! She also has a CT scan this Thursday to check out her lungs and sinuses.

Froggy rocked her PFT's and scored a 112% on her FEV1, 107 on her FVC (full volume capacity), and she weighs 40lbs and is 44 1/4 inches. We need to increase her weight a little, so we may add some bolus feeds in the day. But for now, we'll stick with what we've been doing.

In other health news, Froggy had an EEG a few weeks ago. Her neurologist was out of town so another neurologist called to tell me the results were normal. But tonight her regular neurologist emailed saying that her EEG was abnormal, so he doesn't want to decrease her meds. I'm crushed because I thought her seizure disorder was on it's way out. I'll know more tomorrow and hopefully and we can figure out what's going on.

A lot is happening with Froggy, even though she is thriving and healthy and doing great, we will always be awaiting tests. But I think that is the personality of Cystic Fibrosis, even when things are going well, there will always be something lurking in the shadows. It is the nature of this beast. But for now she is healthy, super active, enjoying gymnastics camp, and having a fabulous summer. So no complaints. She's happy, healthy and loving life. What else is there?

5 comments:

Liza said...

So happy Froggy's doing so well and that you've had such a positive experience with your new clinic. I suspect your stress levels are much lower now!

Keep up the good work, Mama!

Beverly said...

I'm so glad to hear you love your new clinic. While Ella is doing well, I would love to see what another clinic might say or do in her treatment.

Did Froggy go to kindergarten last year, or does she go this year? I am not sure how old she is. I know she's a older than Ella, but I don't know by how much.

I love that photo of you with the horses.

Froggymama said...

Liza, yes indeed. It is night and day! Scheduling her CT scan took three minutes and her nurse care manager was on top of it all!

Bev, I would def. encourage checking out new clinics if you're not happy with Ella's. We were able to meet with Froggy's team and get a tour of the hospital before we transfered, so we knew what we were getting into... Also, Froggy will start Kindergarten this year. She turns 6 in Sept. So she'll be one of the older ones, but school is full-day, so that will be hard for her since she is soooo high energy!

E-boy said...

Hey you guys,
I hope you're having fun and all. Elise, Another Eminem song I want you to listen to is:Like Toy soldiers. Clean. :)

See you later.

Infidel Rooster said...

FM, great news on all counts!

Of course, no procedure is risk free, but the bronch is fairly low. It sounds like, for Froggy, they won't be doing any tissue biopsy, most likely a lavage, maybe? So even less chance of a complication. And I do all my bronchs without any sedation, so she'll be perfectly comfortable doing it under general.

Sounds like you all have a great team, good luck!