December 17, 2008

Quarterly CF Clinic Day

About 3 weeks ago, Samantha was put on an antibiotic for upper respiratory-like symptoms. Every time we put her on antibiotics she loses her appetite. This time it hasn't really come back, which is disappointing. She did gain a little in the last 3 months, but not as much as I would like. She's also pretty lethargic, which makes me think she's lacking some kind of nutrient. Thankfully, this was the big appt of the year where we do chest x-ray and blood work.

First stop: x-ray. Samantha's lungs look clear: "no pneumonias, no blockages, whatever you're doing is working". Have I mentioned that Samantha is not "into" x-rays. She had calmed down just in time to get to clinic...

Next stop: basic stats

Pulse Ox: 99 (Yippee!)
Weight: 13.2 kilos = 29 lbs; 30th percentile
Height: 92.7 cm = 36 inches; 30th percentile

A continual goal for CFers is 50th percentile, but Samantha has sustained a consistent 30th percentile height, which makes her 30th percentile weight a little more acceptable. We'll continue to pump calories in her as best we can. We're looking at a 15.5 BMI, which is about 40th percentile.

Third stop: blood draw

I thought I was going to start crying. I think it lasted 5 took forever!!! Dan and I were both having to hold her down. She kept looking at the needle and blood was leaking out. It was awful. She was so traumatized afterwards that she fell asleep sitting up in my lap. I call back Monday for lab results.

Doc did a pretty minor exam on her (since she was out cold), but then decided today would be a good "test Vest" day. I'm sure all of you CF moms are thinking "Samantha is 3 and doesn't have a Vest?" I's shocking. That's not even the norm in our clinic. Basically every time we go there is a different reason he chooses not to start it. We practiced it a year ago, and she got through an entire 20 minutes, but oh no not today. Did I mention she was still traumatized? We made it almost 4 minutes before the RT said let's call it quits. So the reason we won't be starting The Vest now? Patient Compliance (or lack thereof). I think I actually heard my aching wrist let out a cry. I want The Vest SO badly, but Dan is deploying very soon so consistency in treatment is a good thing.

By the way, CF moms, Sam wore a "small" Vest today, and we had to wrap it pretty tight. I'm just curious if any of you used anything smaller (like extra small?) when your kids were younger?


Cindy said...

Reilly has the EXACT reaction for chest x-rays abd bloodwork. I mean, EXACTLY! She is terrified, and hasn't allowed me to put a band-aid on any type of boo-boo since her CF diagnosis. I keep hoping it will get better, but how do you explain to little ones that it just has to be done? Our big appointment is coming up in May, so I feel your pain!
As far as the vest, she will never get used to it until you have it in your home. (my opinion!) When Reilly received hers, I let her wear just the vest around the house, not hooked up to get used to it. Then, we hooked it up, ran it with just air (no shaking), and gradually worked up to shaking and in time. She got used to it pretty quickly, but the time I took definitely helped, I think. She has always had a small, and she got her vest when she was 2 years and a couple months. Hope this helps! Is there another doctor you can go to get the vest?

Stephanie's Mommy Brain said...

Whew! What an exhausting day for you all!

Julie said...

I'm sorry it was such a hard day. It's so hard when they're begging you to stop the pain and you can't do anything about it.

We haven't tried it but I've been reading lots of blogs mentioning adding zinc to the diet to increase appetite. I'm going to ask at our CF clinic appt on Friday.

BTW, Seamus came home from the hospital last night and is doing much better. Thanks for your comments on my blog.

careysue said...

Rickie was sooooo terrifed of blood draws and pokes that they put a port in. (after trying unsuccessfully to put a picc line in)Other than flushing it once a month when it isnt' accessed it's great. He's been on IV meds so often it's a god-send for him and me!

I hope she gets her appetite back soon! Does she get fed at night? They're thinking about doing that for Rickie and he loves the idea...Mommy I don't have to worry about eating! They can get a lot of extra calories that way!

Take care and I hope she feels better soon!

Alicia said...

All of your comments have encouraged me so much! I'm going to reply to you individually, but I just had to post here how much it helps to not feel alone.

Lil' Chris' Mom said...

Lil' Chris wears a Child's small vest. He uses the Hill Rom machine. What machine did they try her on? B/c it seems like different machines small sizes are different. Does that make sense? We went with the Hill Rom b/c the vest seem to fit him better, but it is still really big on him and we have to pull the clips all the way to the end and also the velcro on the shoulders. At least we know we won't need a new vest anytime soon! He's got plenty of room to grow in it=)
I agree, try a different doctor or something so you can get the vest. And she WILL get used to it. I like the idea of just wearing the vest around the house to get used to it. We were going to do that, but he ended up not having any problems with it. Lucky, I know!
I have to say...the vest really does work! Lil' Chris had a weird cough the other morning and nothing got rid of it until we put him on the vest. Presto...the coughing stopped and he was able to go back to sleep. So, keep trying, don't give up. You'll see what I mean once you get it:)
Hope this helps=)

Christy said...

OH man.. I hate hearing about kids and the traumatizing doctor's appointments. I remember being scared to go to CF clinic when I was little, and of course they never put me in anything like a shaking, vibrating vest!!

I am so glad everything looks good so far. My daughter is still in the 30th percentile for weight and height and she doesn't have CF.

Kelli said...

Oh those long visits are never fun! I agree with Cindy that the Vest is much easier when at home. Sydney was 2 when she got hers (Hill Rom, smallest size jacket) and she would only do it for a few minutes at clinic but they said that was enough to order it. She was up to doing 30 minutes in no time at home, we just played games, puzzles, watched shows etc.

Also, have you tried probiotics to help with her appetite? They would especially help during and following antibiotics.

Anyway, glad the x-ray was good and hope the rest of the results come back just as good!