We are fortunate to live close by Vanderbilt Children's Hospital where, among so many things, they specialize in care for kids with Cystic Fibrosis. VCH has become somewhat of a second home to us ever since Emberlynn was diagnosed with CF in July of 2006 at the age of five months. We were all too familiar with the routine of it all when Cohen was also diagnosed in February 2008 at the age of six weeks. The kids go to what is called CF clinic every 3 months (less if they need to be seen sooner because of concerns with their weight, etc.). People we know like to be informed about how they are doing, so I guess blogging is a good way to keep a lot of our friends and family up to date on their condition.
Last week, the kids had their 3-month appointment. First, they are weighed and measured, their temp is taken, their oxygen level is measured, and their throats are swabbed (to be cultured for any bacteria). They are very laid back about all of it, but they do not enjoy having their throats swabbed (and for that matter, neither do most people I know), but it has to be done. Weight gain is a big deal when you have CF (because weight gain is related to good lung function, which is very important), so we are always hopeful that the kids have gained weight since their last visit. Cohen was 25 pounds, 11 ounces, a 2.5 pound gain from July (which is VERY GOOD), but Emberlynn had gained only a few ounces, which is not good but not horrible, either. Cohen is the better eater, so he tends to gain more weight than Emberlynn, who has a g-tube and receives overnight tube feedings to help add calories to her diet. (Both kids are on a high-calorie diet.)
After all this, we move to the actual exam room and wait on the doctor to come in to talk about how the kids are doing. The doctor was pleased with the kids' progress but was slightly concerned about Emberlynn not gaining as much weight. She decided Em needed to be switched from her Zantac (an acid reducer) to an acid blocker (that I can't remember the name of at this point) to help her absorb her enzymes better. (The kids take enzymes every time they eat to help them absorb the fats and nutrients from the food.) When she examined Cohen, who has been fighting some cough and congestion, she discovered both ears were infected (mind you, he had just gotten over a double ear infection maybe 2 weeks prior to this visit), and she gave him a prescription for Augmentin.
When the doctor leaves, the dietitian the kids see, Kim, comes in and discusses their diets and advises me on any changes that might need to be made (increases in enzyme dosages, tips on increasing calories for each meal, etc.). She did not make any changes to either of the kids' current enzyme dosages, but she did suggest switching Emberlynn from her current feeding tube formula to a different kind that has more calories per ounce but would not add to the amount of formula she would get overnight.
Normally after all this we would be done and would schedule our next appointment at the front desk before leaving, but this day Emberlynn needed her annual labs done (Cohen had his done in April). Fortunately, the nurses had put EMLA cream on both of Emberlynn's arms (shown in the top pic where her arms are red) that numbed the areas so that she wouldn't feel the needle going in when they took blood (they take about 8 vials). So to the next floor up we went, where they called us back fairly quickly. Emberlynn didn't even flinch when they put the needle in her arm, so I highly recommend EMLA cream for anyone with small children who will be getting shots or having blood drawn (it takes about 30 minutes for the area to become numb, so it does need to be done in advance).
Because of Emberlynn's insignificant weight gain, the doctor wanted to see her again in 6 weeks as opposed to 3 months, so we will be returning in December to see if things have improved for her. Cohen will also be seen then for the purpose of keeping them both on the same appointment schedule.
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