March 12, 2008

Samantha's CF Appt

As I mentioned last month, I am going to start posting something informative about CF the 8th of every month. I didn't forget this month-I just knew we had a quarterly appt on the 11th and thought I would wait 3 days so I could post about it. Here goes:

1) Lungs-so far they look good. The last time we were seen by the doctor was Dec, and I don't think we have ever gone the 3 months in between regular check ups w/o having to go in. I'm so thankful. As of right now, Samantha gets 2 breathing treatments of albuterol a day, with chest PT following each one. We're still using the
nebulizer because Samantha is very uncomfortable with the AeroChamber. I keep trying it hoping that one day she'll suddenly be okay with it. The AeroChamber does the same thing as the nebulizer, but takes 10-15 minutes less time. That's huge when you have a starving child on your hands (can't have food for the hour prior), but she still prefers the nebulizer.

He told us that at our next appt in June he will order
The Vest, which will take the place of chest PT and provide a nice rest for my weary wrists. The Vest is a vibrating life jacket that pounds the mucus apart. It's supposed to really make life easier, and I'll post about it in coming months. We were also told that Samantha has an "asthma" component to her CF which includes nasal allergies. She often gets what I've thought were colds, but the only symptom was a runny nose. And let me tell you-the ugliest runny nose you have ever seen. Well, those aren't colds. They're allergy flare ups. She is already on Claritin every day (has been for 6 months), but I'm supposed to bump up the dose if I see a flare up start

2) Digestion-What a road we've been on! Her first year and a half I thought we were never going to get her reflux under control. That's been good for a while now, and with daily doses of prilosec I think it won't be a problem anymore. Note: Excess acid in the stomach is bad because it makes the process of digestion harder and prevents necessary fats from getting through.

Dr. W added an iron supplement on top of the
Vitamax that she currently gets. But our BIG news of the day is that for the first time in her life Samantha's weight has hit the 40th percentile. We are SO excited!!!! And her height percentile is around 35. Every time we started making some headway with her weight, she would get sick and not eat much for 2 weeks. We're not done yet, but we've really passed a milestone.

With CF patients the goal is 50th percentile because research shows that proper nutrition and growth has a direct effect on lung function. I thought for a long time they were 2 different issues that had to be addressed, but I've come to find out that controlling the digestion issue plays a big role on health of lungs later in life (there's a really scary stat about height/weight percentiles by age 3 & lung function at age 20). Let's just say I'm convinced she needs weight! I've recently started giving Sam a drink we have to special order that has 375 calories in 8 oz. Can you imagine? That's the calories of an adult's breakfast!! That's not her entire meal-that's just the drink!

We're so thankful for all your prayers and concerns. We always feel like everyone is so tender about Sam's disease, and we hope when you hear about how well she is doing it strengthens your faith and encourages you to pray about all kinds of things that God can do.

***Added after original post:

Response to Stephanie & Jill: They bring up really good points about their little ones. I have other friends with small children, too. Our doctor has explained to us that while another child is only failure to thrive if under 5% and that really anything between 25-75% is considered "normal", 50% is the goal with CF children because lung development is dependent on this (think the bigger the lungs are able to grow, the better the chance she has to breathe). Samantha would never be on the growth chart w/o enzymes & LOTS of fat in her diet, but because she can get those her weight percentile has a higher requirement than that of a child w/o CF.

Long term side effects of drugs: I don't know of any of the daily drugs she currently takes. Eventually Sam may need daily steroids, and while I don't know what they are, there are long term effects I'm sure. Her doctors use the same caution with antibiotics as any doctor would. I know one CF mom had relatives worried the child would die of heart disease instead of CF because of all the fat intake. But to die of heart disease there has to actually be a build up of fat in the arteries, and that just doesn't happen.


Stephanie's Mommy Brain said...

Way to go on the weight!! I remember when you said she wasn't even on the charts!! (I thought of you last week when Ellie came in at the 10th percentile.) = )

I'm just curious as to the long term effects you expect all of these drugs to have on her young body? Not that I'm saying you should use them! Oh land's no! A few possible side effects are WAY better than any alternatives! Just curious is all.

BTW, I have a whole new appreciation for what you go through with your two little ones and just how blessed I've been with my healthy three!!!

jill said...

ok, just so you know, jack STILL hasn't hit the 40th percentile! lol he hangs out in the 25th :). way to go sam!! and not to compare them, but jack had a bad chest cold several weeks ago and would NOT use the aerochamber. it was awful. i was wishing we had a nebulizer at the time. a steroid finally did the trick.
and yes, you do such an awesome job. reminds me not to complain when i have a hard day with ONE!

Stephanie's Mommy Brain said...

I'm laughing at the people concerned with heart disease!! Especially when I see so many obese children!

I don't think I fully understood your concerns when Sam was below the charts. Thanks for explaining everything to us. I feel much more educated about CF, which is a good thing since I want to be a good friend and this impacts you in a huge way. = )

Marc and Charity said...

Goodness Alicia, what a lot to think about and deal with. Bless you girl. I'm pleased to read about your precious girl doing so well and in the 40th percentile. Awesome!

just curious- I assume one of you is a CF carrier? I've been reading over at CF Husband and have learned a LOT about CF as a result.

Missy @ It's Almost Naptime said...

Alicia, I am so, so humbled by you. I know your strength comes from the Lord, but you are an absolutely amazing woman. Don't say "no I'm not" because you ARE. And God knew that is exactly what your babies needed.