Home One Year Today

A year ago today, we brought Brett home, after spending his first 149 days of life in the hospital at UNC Chapel Hill. It was one of the happiest days of our lives, because we truly did not know whether this day would ever come. Brett's cystic fibrosis threatened his life before he even had a chance to live it. We were truly grateful for just one day with him, and even more so each day since. Our experience with Brett has changed the way we think, the way we live, indeed, who we are. We don't miss the simple blessings anymore. No longer will I miss the blessing of all my children sleeping under the same roof at night. Or going to the pool, or attending Mark's soccer game, picking Mark up from school myself, or just hanging around the house. When the privilege of being with your children in the daily routine is taken away for awhile, you realize that's just what it is - a privilege. Although we have our times of craziness, busy-ness, and physical fatigue, we never forget to cherish every single day we have with our loved ones.

The Vest

One of our appointments on Tuesday was with the physical therapy department, to try on the vest, which most people who have CF use at least some of the time for daily airway clearance. If you'll remember, we are doing manual airway clearance 2-3 times a day for about 20-30 minutes. This vest will take the place of that most of the time. It will take the same amount of time, and we will still need to sit with him while the machine is working, but we won't necessarily have to experience the wrestling match - which is what it has become - every single time he needs airway clearance. It's not that he dislikes the manual therapy, he just has so many other things he'd rather be doing!! Furthermore, as it is now, we are only clapping each of the 6 lobes we do for 3-5 minutes. This machine provides the compression/vibration for all the parts of the lungs for 20-30 minutes.

The therapist showed me the 3 different machines I could choose from, and she demonstrated all of them on herself. I chose the one that is pictured, and then we tried it on Brett. He wasn't feeling his best, so I wasn't sure how he would react. He just curled up against my chest and kept sucking on his pacifier like nothing was even happening. Therefore, I said, "Order it!" No word on how long the process will take since it has to be approved through our insurance company. If you'd like to know more about the process, you can read about high-frequency chest compression below.

High-Frequency Chest Compression


High-frequency chest compression (HFCC) is widely prescribed for patients with numerous diseases and conditions that compromise the body's ability to clear secretions from the lungs.


HFCC works by administering rapid but gentle compressive forces to the chest via an inflatable jacket. These "compressions" increase air flow within the lungs to loosen, break up, and help your body mobilize and clear those secretions.


After starting HFCC therapy, most patients notice:
* easier breathing
* fewer respiratory infections
* greater exercise capacity
* fewer visits to the clinic
* reduced hospitalizations

A Long Day at UNC

After yesterday's unscheduled visit to UNC (an hour drive both ways), I got home in enough time to help Mark with homework then it was off to soccer practice! After soccer practice, Rob and Erica took the boys to get dinner (drive-through at Chick-fil-A!) then home and I went to 2nd grade parent orientation at school. By the time I got home, Rob had already left for his hockey game (they are in the playoffs again - woo!). It was after 10 PM before I got Mark to sleep, and then Gantt woke up! Ended up just putting him in the bed with me and hitting the sack.

In clinic yesterday

Today we had 4 scheduled appointments at UNC - physical therapy, pulmonology, nutrition and gastroenterology. After the docs looked at Brett yesterday, they decided to do a throat swab and a nasal swab - to test for bacteria and for viruses. He was so listless and lethargic, he hardly even had the energy to protest much. They also ordered some blood tests, but before they did them, they made a courtesy call to Brett's gastroenterologist (GI doc) to see if she wanted to order any tests since they were already going to be drawing blood. That is one thing I like the most about this hospital staff - they always work together to care for the patients. Today we had his pulmonologists, GI, and nutritionist all in the same room, discussing Brett and what changes to make in his care regimen. It is a very effective way of doing things in a system (American healthcare) that oftentimes is the farthest thing from effective. Today Brett is feeling a bit better, but I still wouldn't be surprised if his viral panel shows that he does have a virus. If this were the case, we wouldn't treat it unless he developed some respiratory distress.

New formula - yay!

The blood tests came back great - they mainly checked white blood cell count (if this number was elevated it might suggest infection), CRP (inflammation), and IgG (immunoglobulin). The IgG is already falling since his last supplemental infusion.  All the tests the GI doctor wanted were surprisingly good - showing that he is in fact absorbing his nutrition pretty well. Unfortunately this was the 5th visit with weight loss. However, he just finished his steroids last week, so much of the weight loss is due to losing the water weight the steroids made him retain. Since we haven't increased the feeds in quite a while (and before he started crawling and moving around so much all day, burning up calories), we decided to increase the rate of the 20 hour feed. Also, we will be switching him from Pregestimil infant formula to Peptamen Junior toddler formula. We hope he tolerates it well. For us, this means in a couple weeks we will be DONE mixing formula!!!! Yeah!!!

*Breathe*

It's been a challenging few weeks! This past week was a lot better, but it was still a challenge as Mark started his first week of school and our new nanny, Erica, began her first 40 hour week. She worked quite a bit over the summer and she's doing great!

Here is Brett's most recent PICC line in his arm. For his daytime infusions, we'd hook up the syringe and pump and put it in his backpack so he could keep playing while he got the treatment. It worked out pretty well.

Last Sunday (August 15), I e-mailed Brett's doctor to ask if we could stop the IV antibiotics. It was getting really difficult for us not to get as much sleep since you have to stay up real late and now we have to get up at 6 or 6:30 all the time. He said that would be fine if I thought Brett was not coughing as much and he was "back to baseline". It had been 17 days of antibiotics already. I thought so, so we stopped. Since he still had the PICC line, we still had to flush it everyday, though, and the next Tuesday night I couldn't get it to flush. I called that night to let the doctor on call know, and we went to clinic the next day (last Wednesday, Aug 18). The good thing was that Brett's doc got to actually see him and agree with me that he seemed well enough to come off the antibiotics. Since we came to that course of action, they just removed the PICC there in clinic instead of trying to get it to work again.

This is the wrap we put over the PICC line for bathtime. 

The bad thing for us is that now that Brett has had pseudomonas, he will be treated as if he always has psudeomonas growing in his lungs. For right now that means going back on TOBI for the rest of the month. (TOBI is the inhaled version of the antibiotic Tobramycin. When Brett gets IV antibiotics, it's usually a combination of Tobramycin and Cefepime). It's basically one month off, one month on. We are having an extremely hard time with it. I don't know what to do to make it better. It's the time commitment of one hour in the morning (20-30 minutes chest PT then 30 minutes TOBI neb right after) in addition to all the other things we have going on in the mornings, and the screaming all the day through the 30 minute inhaling. We can do the other neb (Pulmozyme) in the afternoon if we find time for that, but if we don't and we have to tack it to the night time routine, he's got to do the Pulmozyme neb for 15 minutes, chest PT for 20-30 minutes, then the TOBI neb for 30. This also falls during the time we are trying to get the other 2 kids to bed as well. We don't really have any options as far as timing goes because the TOBI doses should be 12 hours apart, ideally. He's hardly even awake 12 hours, truthfully! I'm told that 10 hours is the very least the doses should be spread apart.

Everything seemed fine until this weekend, when Saturday Brett seemed just a tiny bit under the weather. By Sunday (yesterday, August 22), he was sleepy and lethargic all day long. We do have an appointment tomorrow, but based on the way he felt I thought it was not wise to wait that long to see the doctor. Again I called the on-call doc and she made us an appointment for this morning around 10:30. Today he's actually acting a bit better. He's so complicated! The good thing is that they all realize how complicated and tricky Brett is too! I'll update when I can!