Friday, May 21, 2010

Progress and Challenge

Today we had our first visit back at the CF clinic in a month. To say we were nervous, excited, anxious, and jittery just wouldn't sum up our emotions. What a bizarre anticipation we felt, knowing what we learned today would be the benchmark- for how we had done caring for him, for how he had responded, for where we are headed and where we have been.

I was prepared. Have mercy, was I prepared. I have documented every feeding, every medication, every diaper, every breathing treatment, and every supplement for the past month. On days Jackson has had abdominal pain, it's on the green notebook. On days he wheezed, it's in the book. On days he did anything that could be outside the realms of normal baby behavior, you better believe it's in that book. It may sound a little compulsive to the outside observer, but there is a clear and useful purpose to it all, and today I began to see the fruits of my labor. At first I needed to write everything down so I would remember to do it and when to do it. After that it helped me tweak the routine to optimum efficiency so we had more time being a family and less time around the medicine cabinet. It also serves as a record of what works and what doesn't. If Jackson is doing well on a particular treatment, or not so well, we have a record of it. The doctors and dieticians have their records, and I have mine, and between them all we find what works best with documented accuracy. And as we add and alter medications, it will prevent me from becoming overwhelmed, confused or forgetful with the treatments. I'm kind of patting my back in retrospect for maintaining the records even when they began to seem unnecessary.

The weigh in was nerve wracking. The walk from the waiting room to the Vital check area and scale was a cross between coming down the stairs Christmas morning and a root canal. Jackson weighed in at 10lb, 12 oz, and we were able to breathe. Ultimately the weight gain was good, but could be better. As a rule of thumb, you can't put too much weight on a CF kid. They need a diet high in fat and calories, about one and a half to two times what another person that age would need. So I swallowed a bit of hurt as we decided the best thing to do was to add some formula to my breast milk to make it more calorie dense and try to pack just a bit more chub to the cherub cheeks. I know it's the best thing for him- body mass has a direct correlation to improved lung function among other things. It's a much more pleasant option than feeding tubes. Only positive things can come from it, but it's still just a tiny bit hard to take. I certainly wish I was able to fatten him up on breast milk alone. But really, I think it's just a reminder of the illness itself that makes me sad. Of all the things it has the potential to take, it started with the most important thing I do for my baby. MY body's physical ability to nourish and grow my child. I was also absorbing this realization at the same moment it dawned on me I was sitting in the same room, the same spot I had been the day we got the diagnosis. Low point.

We're also starting a new inhaled enzyme treatment to help thin the mucus in Jackson's lungs so that he can clear it by himself. his cough has been consistent and a bit ragged the past couple of weeks, and he can't clear all of the junk out on his own. Were that situation to get worse...well, another breathing treatment every day is a much better option. I've heard great things about Pulmozyme. I'm again indescribably grateful for the health coverage of Medicaid, because a one month course of Pulmozyme would cost us $2000 out of pocket. If you think that's steep there are inhaled antibiotics that run upwards of $4000 per course of treatment. It's certainly got me thinking hard about the current state of health care.

The final tweaking of treatments was upping the enzymes, since Jackson is two pounds heavier than when he started his prior dosage. We switched to ZenPep, which I like because the granules are much bigger and don't tend to go flying off all willy nilly when we try to administer them. The appointment was good overall, pending the results of the throat culture of course, There were no feeding tubes, no hospitalizations, no failure to thrive, no needles...I'd say we have plenty of reasons to be pleased with the outcome. We'll be back in two weeks to check on the changes.

Finally, tomorrow is a huge day for us. Our outstanding circle of friends got together and organized a huge freaking benefit for our Great Strides team, Hope for Jackson. It's a "Gospel Brunch" Sunday morning, hair of the dog, mimosas and bloody marys, music, and a fabulous brunch spread kinda thing. They've gone all over the city and beyond and gathered a ton of stuff for a raffle and a silent auction. I don't think I've ever felt more undeserving of the love shown to me. I am frantically collecting pictures and posters and knick knacks to try to put together scrapbooks of all of the fundraising events so that when Jackson grows up he can see how much he was loved and supported before he even knew.

Raising a CF child -in my brief experience- is a lot like raising any other child, but under a magnifying glass. The worry is tenfold, the awareness of joy borne of the worry is tenfold. Of one thing I am completely certain...I am most definitely not taking a single moment for granted.


  1. Your diligence and organization in the note taking and record keeping is awesome. I am also patting you on the back!