Tuesday, January 20, 2015

Keepin' on keepin' on

It's been so long since I've blogged that I don't even know where to start! I guess I'll tell you a little bit about what's been going on with Drew, and then either after that or in a separate post share a little bit about some of the work that I've been doing lately.

I think I left off with the PICC that Drew had for IV antibiotics in November (seriously, how is it already January!). While the antibiotics didn't seem to make much of a noticable difference in his cough, the cycling of inhaled Ceftazadime and Tobi constantly since the PICC was removed has seemed to help. We are now at 3 hours of treatments a day. Every. Single. Day. Sitting through all of that with little to no complaining is Drew's superpower.

We saw the doctor in January for a clinic visit, and while our cough was nearly non-existant, nasal congestion was at a epic high since his sinus surgery when he was two. The doctor said that he was full of nasal polyps and it was likely time for another surgery. She referred us to his ENT for another opinion and likely scheduling of the procedure (less than pleasant I tell you).

At the NACFC this fall, Drews doctor and I had also talked a little bit about HGH (human growth hormone). Kids with CF often tend to have lower than average levels of this hormone and sometimes need a supplement. The supplementation is often useful in increasing appetite and weight gain, and during the conference we also discussed how it may be useful in promoting lung growth, something that we want and need. Drew has always had low level of HGH, but his growth is mostly on track, with BMI falling in the 50th percentile or above since he was about 6mo old (I still have the growth chart from the dietician from when he hit the 50th!). Well, a few months ago with his annual labs we found once again that his HGH is low. Prior to our visit, his doctor had consulted with his endocrinologist about whether HGH supplementation was necessary. This comes in the form of a shot (I'm not sure if its daily or weekly?) but I was dreading having something else to manage, even if it could help him. The even bigger headache, I feared, was the rumors that I'd heard about the difficulty of getting this approved by insurance. I've fought the good fight, and i'll do it again if I have to.

To my surprise, the endocrinologst almost laughed at the notion of putting him on HGH given his current growth curve. However, when our doctor shared some of what she had learned at the NACFC about it helping to promote lung growth, we all decided that it would be best to have a follow up appointment and look at all of the different things that go into making this decision. That appointment is coming up in March.

After the appointment, I started to think about Drew's sinus congestion. We hadn't been doing the nasal sprays as often as we should, but quite frankly given the new 3hr treatment times that we make him sit through, we have decided to spare him the nasal cleansing, which his absolutely hates. It sounds silly, but almost worth an awful one day surgery and a long span of no issues to forgo 30 seconds of screaming and squirming and spraying a series of medicines up his nose.

Then I had an "ah-ha!" moment. After Drew's last surgery, his doctor suggested that without regular cleanses he would likely need this surgery every 6-12mo. In thinking of alternatives, I signed him up for swim lessons. Drew has been swimming, at least weekly, since his last surgery, and then in November when he got his PICC and was out of the pool for 8-10 weeks, all of this sinus stuff returned. Well, I got that kid back in the pool faster than I've ever done anything in my life, and wouldn't you know, the sinus issues disappeared!

Because we had already scheduled the ENT appointment, we went, just this past Saturday, and the doctor said that he has no polyps and there is no reason or need for surgery. I told him about the pool, and he [who has poor bedside manner] not so politely stated that there is no scientific evidence that chlorine can shrink polyps. Now I'm no doctor, but 3 weeks prior there was a nose full of polyps, so many in fact that we were getting ourselves ready to schedule a surgery. We had tried some sprays and antibiotic drops that didn't so much, and it was not until this kid was in the pool that his nose cleared right up. I'm not suggesting that this will work for everyone, but I also don't want to dismiss the fact that it worked for us. I bet my YMCA membership would cost my insurance company less than a sinus surgery. Just sayin'.

Overall, Drew is doing really well. I would like to get off some of these inhaled antibiotics and get some of my time back, but right now it's working, so for the foreseeable future we shall keep on keepin' on. With registration right around the corner, the thought of Kindergarten lurking in the back of my mind makes me nauseous (thoughts for another post).


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