Friday, November 13, 2009

CF Clinic Update

Froggy had her CF clinic appointment on Friday, Nov. 6th.

She is still 30.5 lbs - the same weight she's been all year. Her height however was 100cm. She's growing up, not out. Darn. So her BMI is 10, weight 10th percentile and height 50th percentile. Our nutritionist said that because of Froggy's pickiness, coupled with lack of appetite, the g-tube is inevitable.

FD and I have been fighting this decision from the beginning. We felt like it's such an invasive step, that she could be genetically small, and would start eating more the older she became. But if anything, she eats less and is more active. Because there is a direct correlation between digestive health and lung health, FD and I have decided this is the best decision for our Froggy. We have tried EVERYTHING to get her to gain weight, milks with supplement in the middle of the night, high fat/calorie meals and snacks. We wanted to exhaust our options before the g-tube. But here we are, a year later and only a few ounces gained.

The wheels are turning and we'll meet with a GI doc soon for a couple tests before we schedule the surgery. It will probably happen in December or early January.

Froggy's throat culture came back NEGATIVE for Pseudomonas and MRSA, and all the other nasty little critters. Woo Hoo! Her x-rays showed little change from the x-ray two years ago, but did show slight peri-bronchial markings. I believe this is typical for CF lungs, but will do some research to see what this means exactly. Her blood levels were good, a liver enzyme elevated slightly, but could be due to her seizure meds. We're going to keep an eye on that, probably do another draw at our next appointment.

Despite the g-tube news (which we were prepared for) overall it is good news. Our kiddo is one healthy little frog. Her lungs are clear, even with a cold. And her preschool teacher said she seems healthier than the 'healthy' kids. Her immune system rocks! Must be all the broccoli she eats!


Lydia Russell said...

I'm sorry to hear about the G-Tube. We've managed to keep Azer off of it so far. Sometimes I feel like installing a funnel into his mouth and just pouring milkshakes down. Lol.

Good to hear about the healthy lungs! I'm not sure if the peri-bronchial markers are anything like what Azer has. He has beginning thickening of what I think is the bronchial walls, just at the top.

Please write about how the G-tube goes. Sometimes I fear it is down the road for us as well.

Unknown said...

That sucks about the G-tube, but SO HAPPY that all the other news was good! Whoo hoo!!!

Infidel Rooster said...

Ditto on the above comments. It's a drag about the g-tube, but it sounds like everything else is stellar.

Hopefully, the extra nutrition will go a long way in helping your frog continue to do well.

Julie said...

My son with CF is 8yrs old (or will be tomorrow!). We had such a hard time getting him to gain weight. His GI dr. started him on Megace. It has worked wonders for him! He went from not even on the charts to 75% BMI. I know that every kid is different but thought I would mention it as something to ask about. Email me if you would like more information.

The DutchMac Tribe said...

Sorry to hear about the g-tube, but I'm thrilled to hear the rest of the news is good. And a great big 'Woo Hoo!' for her kick ass immune system. Yippee!

Anonymous said...

The lack of appetite, no interest in food is sooo frustrating. In our case we found out that Max had strictures/adhesions from his surgery at birth for MI and they were causing a blockage, so his enzymes weren't getting thru, nor was the food. He'd eat ONE nugget and announce he was full. I STILL sleep feed him CIB in the morning with a straw to push in extra calories.

You've tried your darndest, you can' make her eat, so I guess it's time to look at different options. Why make mealtimes and food a stressful, negative experience. BTW, we've had similar comments about Max at preschool, more recently kindergarten as well.

I mentioned ursodiol on FB as well. Max was put on it when he was a baby and on TPN. Good luck. You're in my thoughts Ratatosk

Anonymous said...

I had a friend who's son had a g-tube (not for CF, but leukemia), and it made a huge difference. She was able to keep him healthy as long as possible by virtue of the g-tube. So, a g-tube can be a very good thing!

I totally get your frustration about weight. We're not dealing with CF, but our son was only 5 lbs 13 ounces at birth, and for the longest time was at 3% with no appetite. It was frustrating to get the "helpful" suggestions from the doctors, pharmacists, all to no avail.

After we dealt with this anemia, his appetite has picked up somewhat, but he is still extremely picky. Last night would not touch dinner. Not a single bite. He's up to 6%, but boy would I feel better if he ate fresh fruit and veg, and was closer to 50%.