Mark's Physical

Yesterday we went for Mark's annual physical. We always do it in the summertime, right before school starts back in August. He saw Dr. Ercolino at Wake Forest Pediatrics, who is a pretty cool doctor to have if you are a 7-year-old boy. Everything seemed to check out ok except for his constant eczema and his asthma. He was wheezing some and his nose was pretty stuffy.


Mark does basic pulmonary function tests at least once a year at the doctor's office and at UNC's children's specialty clinic, where Brett's pulmonologist follows Mark as well.  You take as deep a breath as you can, then try to blow out all the candles on the comptuer screen. Mark loves doing these tests. On the 3rd try, he left all but one candle burning. The results showed that his lungs performed at 71% capacity.

Although 71% is not totally terrible, it's certainly not stellar performance. It was improved from last year's performance though. Sometimes we do the tests, then get an Albuterol treatment, then repeat the tests to see how much the treatment helped. It usually helps a good deal. Today though, it wasn't really necessary. Dr. Ercolino just asked us to use the Flovent inhaler as well as his nasal spray Veramyst twice a day every day all year long, not just in the wintertime. Since Mark is used to these medications, he is very complaint when it's time to take them. He does them when we ask, and does them correctly, and without complaint. This gives me hope that one day Brett will do the same!

As I have mentioned before, the Flovent (and Albuterol, of course) is the medication Brett takes as well. To illustrate how much more powerful a dose Brett must have, I'll tell you that Mark inhales a total of 160 micrograms of Flovent every day while Brett inhales a total of 440 micrograms. Their size/age difference goes without explaining. Also, Brett's last PFTs showed his lungs at below 40% capacity, which is why we had such a scare before he took the 12 week steroid course. I am thankful that these medications are available to help my boys *Breathe*!

Wordless Wednesday

Everybody Loves Daddy

*Breathe*

I feel like I need to breathe! It's like my tennis instructor gets on to me for holding my breath during the drills. He yells, "Breathe! You're not breathing!" We've had a really crazy two weeks.

Grandpa playing Star Wars with Mark and Gantt

Brett went into the hospital 2 weeks ago, then got out, then scheduled to go back the next Monday (7/12), then postponed a day (7/13), then having the bronch but not having to stay after all, then going back the next day (7/14) for another appointment. That meant packing, unpacking, packing, unpacking, etc. The next day (7/15), Rob had an eye surgery. It was to revise his Lasik he had done last February. Thankfully, in addition to my helpers at home, Grandpa came up for that to take Rob there and back and to help me take care of the kids. 

North Carolina Children's Hospital

We spent most of the day Tuesday in Chapel Hill preparing for, doing, and recovering from the bronch. Wednesday we had a 9:30 AM appointment with Brett's gastroenterologist, and that lasted about 2 hours. We made just a few adjustments to his GI meds and did some tests to find out a little more information about what is going on with his nutrition (malnutrition/malabsorption) and see what kind of bacteria might be present. She decided that the pH probe and night in the hospital would be better postponed until he completes his treatment for the pseudomonas and staph in his lungs. His lungs are growing 2 types of pseudomonas, the smooth and the mucoid type, as well as a staph. The staph IS susceptible to antibiotics.

While we were there, we also got to see his pulmonologist, nutritionist/dietician, care coordinator, and even ran into the CF social worker. And of course the wonderful nurses in the clinic. While we were there, we got to see UNC's speech pathologist, who is also a leader in the field of feeding therapy. She squeezed us in her schedule, so we had an hour and a half to kill, but I thought it was worth it for her to take a look at Brett. Brett and I had lunch together then walked around the campus just to get some sunshine. The speech pathologist was impressed with how challenging Brett is to feed, and suggested an official 2 hour feeding evaluation, so we scheduled that for August 6th.

On the way back I got to stop in and visit with the great folks at MidCarolina Homecare Specialists, who even gave me a demonstration on how to use the new feeding bags I'll be getting. They provide the best service and they're always on call, 24/7, for questions or emergencies regarding equipment. Thanks, guys!

With the additional medications he is now taking and the additional inhaled meds, it has been a struggle to figure out the best way to do it. We are having a difficult time adjusting to the new routine and getting everything else done that needs to get done in our family life. I'll probably explain more next week. But the plan for now is that he will take this TOBI, which is an inhaled form of Tobramycin, for 3 weeks then have 3 weeks off, then go back in for another bronchoscopy to check to see if the pseudomonas has been eradicated.