Friday Morning Update

Brett slept like a rock through the night since he was so completely wiped out from yesterday's events, and now he's back to his smiley self! It was actually around 8:30 this morning before anybody bothered us at all, which is kind of a miracle if you know anything about hospitals! We survived the inevitable morning battery of doctors and residents and nurses, and for Brett we also have respiratory therapists and physical therapists coming in about 7 times a day total. This morning he is in a good mood, although still fairly tired.

His peripheral IV in his hand was put in place last night, to start a milder antibiotic. However, in order to administer the more powerful antibiotics he needs to fight this lung exacerbation for the long period of time we will need it, we must have more stable, permanent access. The plan for today is for the PICC (peripherally inserted central catheter) line team to look at him and see if they think they might be able to get one in him. He did have a PICC back when he was in the NICU, but I was told that those are a lot smaller, and you also can't go home on one of those, so it isn't really an option. Hopefully we will be successful in getting access today and will get going on these drugs, because the sooner we get the regimen started, the sooner we can go home! It's hard to get things done on a weekend, and with this being Friday, I really want to get set up. If things get pushed back, we could be here well into next week. Another good thing is that he will probably come off the oxygen at some point today - at least while he's awake. This is progress needed in order to go home, too.

Why didn't we know he was sick? Clinically, the subtle increase in his work of breathing was the only indicator at home we could've noticed, and we wouldn't really have been clued in to that until it was a little worse. It was just kind of lucky that we were here for a check up yesterday. The good news is that coming in for this check up probably saved us from ending up in the emergency room over the weekend, and possibly another PICU stay if his respiratory distress had heightened. What happens with CF, particularly in babies, is that the teeny tiny distal airways become affected with inflammation first, and the changes are so subtle the patient nor the parent often even knows the disease is worsening. For awhile, the patient will feel fine until the exacerbation (or infection) gets worse. This is another important reason to come in for regular check ups and pulmonary function tests. Once the child grows, the airways also grow, so when the child is older they are able to clear those airways better with medication and manual airway clearance and postural drainage.

Part of the other reason we didn't know he was sick is because his weight gain over the past month has been phenomenal, and so when you're doing well weight-wise, the symptoms of illness take a little longer to show up. He's gained an average of 18 grams a day! He now weighs about 16 pounds and 5 ounces! I am increasing his feeds every 3-4 days as he can tolerate it and that combined with the enzymes and supplement is really working to put weight on him. He's also doing so well in physical therapy that his muscle mass is also increasing. Coming in this early probably prevented him from getting dehydrated, too. So for now he is sleeping peacefully and we are just enjoying the quiet time together. I'll post later to share what happens today.