August 11, 2011

CF Clinic

Yay, great clinic day!

Well, I was so sure his PFT  results today was going to be terrible, as his wet cough is still there. He blew 95% FEV1 which is the best result since 2009. The doctor was pretty amazed at that result. He lost a few ounces, but grew a little bit. They aren't extremely concerned with his weight, but the dietitian wants me to try to add a half a can extra through his G-tube.

The doctor wants me to continue with the antibiotics and the increased treatments. He may be on the antibiotics for a full 14 days depending on how his cough sounds on the 10th day. The doctor wants to really knock whatever it is out of his system, since it originated in his sinuses.

The dietitian made me feel more relaxed as far as Azer not eating. She was basically saying there is no reason to be forcing food in his face if he is just not hungry. So, I guess at this point we are focusing less on eating and are being a bit more dependent on the G-tube. I'm not sure how I feel about that, since they have mentioned they didn't want him to be completely dependent on the G-tube, but I am so grateful that we have it as a tool to fight CF!

Well, I am just thrilled about his lung function! I guess we are going to keep on running!!

August 9, 2011

Antibiotic Time

Well, we've had a good, long run without any need for antibiotics, or increased treatments. I knew it was coming eventually. I just didn't expect it while it's still summer.

It started two weeks ago, with a drippy, stuffy nose. After a few days, I could hear it migrating into his lungs. This past week, I could hear that deep, junky cough. The mucus has been white to clear, no I'm hoping there isn't anything too major going on in there. When I listen with the stethoscope, I can hear squeaky noises. I'd had already started increasing his treatment time. I know he has lost some weight. His appetite hasn't been great at all. Some days, he won't eat anything all day long, and then eat a very small amount for dinner. Thank God for that G-tube!

Well, I called the doctor yesterday, and he prescribed Augmentin. This time, instead of liquid, it's these gigantic pills. Their seriously huge. They looked at his previous culture, and it was just Staph and normal flora. So, I am really cracking down with treatments now. Yesterday we managed to get in 2 hours worth of Vest time. We are definitely keeping up with the running during this, as well.

I hate it when he gets sick, and I know it just by looking at his face. The paleness comes back, and he gets dark circles under his eyes. I hate seeing CF on him. It's like an entity that overtakes him... well, in my mind. It's always strange to me that, as many times as I've done this, it still overtakes my thinking. I mean, I've been through this so many, many times. Seeing him get sick, increase treatments, start extra medications, start antibiotics. It's really not a big deal. But, somewhere inside my head, I'm going, "This is a big deal, this is not good, yep ... this is a good opportunity to freak out. Yep, we are out of control here!".

Our CF appointment is next week, so hopefully with the antibiotics, the running, and endless days of breathing treatments will get it cleared up!