March 2011 CF Clinic Visit & Update

It's been a couple of crazy weeks with Samantha.  We had clinic on March 14th, and it was stressful.

Ultrasound

Samantha's blood work in Dec was normal except for liver enzymes.  The doctor ordered an ultrasound, but since this very same thing happened the year before with a clear ultrasound, there was no rush.  We have a 50 minute commute to our clinic, so the clinic scheduled the ultrasound for the same day as our next clinic visit.  Hardest part of the ultrasound is that it was scheduled for 11am, and Samantha had to fast (food and drink) 6 hours prior.  By the time of the ultrasound she hadn't eaten for 15 hours. 

Clinic had a rocky start

We were shocked how great everything went all morning.  Unfortunately, as the ultrasound was finishing, Samantha's hunger turned to headache.  She started screaming in pain, and there was no calming her.  We rushed to lunch, but she wouldn't even eat anything because her head hurt so bad.  This was the state she was in when we showed up to clinic.  As members of the CF team shuffled in and out of room, it was obvious that clinic wouldn't go very smoothly.  After many tears, she finally fell asleep on my chest.  Praise God!  After about a 20 minute nap, she woke up happy as a lark and said, "Mom, I'm ready to go breathe hard!"  Thankfully, we got PFTs and throat culture done!  PFT were okay-she had mastered the long exhale, but still needs to work on the fast exhale at the beginning.  Culture grew staph, which is normal for her.

Weight

The hard part of the day was her weight.  It was down significantly from 3 months prior.  Height was 65th percentile, but weight was 35th.  Makes the BMI under 25th percentile.  We talked at length of the need to get that weight back up, and a weight check 6 weeks out was scheduled (can't believe that's only 4 weeks from this Monday!).  In hindsight, the fact that she hadn't eaten for about 18 hrs by clinic time HAD to play a roll, but I don't know that it would have affected her weight by the 2.5 lbs she needed to be at 50th percentile.  And very gently, the doctor did say we would monitor this closely, and if we couldn't turn this trend around we would discuss options such as the "g-tube".

G-TUBE

There is just no way that word makes a parent feel good.  I know many CF moms who are thankful their child got one.  It changed everything for the positive!  I'm sure if we have to resort to that option I will feel the same way (especially knowing the stress I feel now), but the g-tube is considered a last resort for a reason.  None of us want it!

Trying (and failing) to add calories

We came home and tried to get Samantha to make more fattening choices than raw broccoli and fresh strawberries (with no dips).  She felt my stress, and she completely rejected anything "good" for her that she normally did eat.  By Friday she had lost more weight, so after many wonderful suggestions and the support of a dear CF mom, I went on a food vacation last weekend.  We backed off worrying about food, and then I called the nutritionist on Monday.

Regrouping

Our nutritionist recommended a sticker chart that included 3 potential rewards:  a sticker for every 10 minutes of sitting at the table, a sticker for 5 bites of something, and a sticker for 5 drinks.  Whenever she earns 5 stickers, she gets 10 minutes of time with me or dad doing the activity of her choice!  She has responded very positively to this.  Also, some medicine was ordered to increase her appetite, which I picked up yesterday and will start her on next week sometime. 

Pink Eye

Tuesday morning Samantha woke up with her eyes stuck together (totally freaked her out).  A dr's visit a few hours later confirmed pink eye.  She had a bit of a runny nose, but her ears, throat, and lungs all sounded clear.  For two days we treated pink eye and kept Samantha secluded.  Wed night, I took Timothy to Kidz Club, and Samantha was generally fine.  By the time I got home 3 hours later she had a fever and a bad cough.  BAD COUGH.  It came on quicker than anything ever has.

You know you're at an awesome CF clinic when...

One call to the clinic, and they ordered Augmentin for her.  The coordinator also was concerned that the sudden onset and fever was indicative of the flu.  She wanted me to go back to our gen peds office and have Samantha tested.  By now it was mid-morning, and the entire pediatric office shuts down at noon on Thursday for a meeting.  At a military hospital, really???  The soonest they could get me in was Fri morning, so I called the CF coordinator back to ask if she wanted me to wait until Fri or go to the E.R.  She said, "Neither.  I'm going to call you in some Tamiflu."  I LOVE THIS PLACE!  So without even a dr's visit, I got Augmentin and Tamiflu.  If she's not better by the end of the weekend, something is seriously wrong!

Needless to say, weight has taken a back burner in the midst of one of Sam's worst sicknesses ever.  I'm still doing the sticker chart, but now our emphasis is 4 breathing treatments a day and taking these 2 new meds.  She tends to lose weight during sickness, so I am praying continually that God will protect her and motivate her to eat!  Per the nutritionist's instructions, I am only weighing Samantha once a week, so that will be on Monday!  She weighed 37.5lbs last Monday, so we'll see...