Tuesday, July 19, 2011

Time off

Last night, I spent a good 45 minutes writing an update on Drew. When I clicked "Publish", the whole thing disappeared and I was to mad to re-write it. I'll give it another go now, but its never as good the second time around.

One afternoon last week, I got a call from Drew's CF doctor, Lisa Burns. She was our fellow from day 1 and recently accepted a full time position at Childrens, and we decided to stick with her. I have no problem with our other doctor, but I felt really connected to Dr. Burns and I'm happy that she's hanging around. Anyway, she called because she was going through some of our paperwork and remembered that we had discussed having another bronchoscopy done this summer when Drew was healthy. At the suggestion of setting up an appointment, I pushed back pretty hard. I told her that I do get why they want to look - if they have a good understanding of the physical shape of his airways it may be easier to distinguish if the sound that accompanies his colds is just his malacia and other abnormailites or if it is a nasty bacterial infection - but I need to understand the benefit over the risk because he always seems to get sick when we have one of these done. She said they would want to see if there was any improvement in his malacias. I told her that I hypothesize that they would say its slightly better but that's about it, and honestly how would that change any course of action we take. She agreed. Then she said that they would want to get a good culture for pseudomonas and I was like we caught the last two orally. There was a report from Australia a few days ago that seemed to indicate that it wasn't any better to get a bronch sample than an oral one. She was like well, we just dont know if we can trust his throat ones because of the collapse he has when he coughs. I get that. But because we were able to catch it before with an oral sample, my fear that there is something horrible going on that we are missing has subsided. Our last two cultures were negative for just about everything, and the previous two had been positive for pseudomonas, so I believe its gone, or at least not causing any problems. She said that if he does have it then we would want to cycle him on some inhaled antibiotic, like Tobi. But to her point above, the reason we decided to go with IV antibiotics was because of the theory that the collapse from his malacia was preventing the appropriate amount of antibiotics from being inhaled. Really not worth to much more discussion since we don't even know if he has anything.

So she said she would talk to Dr. Wood (the doctor who actually performs the bronchoscopies) and if they both decide its best to get one while hes healthy then she would let us know and we could get it scheduled before the germy fall season. I got this email from her yesterday:

Hello Erin,
I spoke with Dr. Wood further about looking at Drew's airway. He agreed that if we did not need a culture for any reason then we could postpone looking at his airway. We should be able to assess how well he is doing based on the frequency of antibiotics, admissions, etc. Hopefully he will have less infections during his second year of life since he has already seen some of the viruses this past year. Let me know if you have any questions.
Yay! Have I mentioned that I love these doctors? I feel like they will really listen to me and my questions and concerns and still make the decision that's best for Drew. If they really felt like having a good look at his airways would prove beneficial going into the fall/winter, then I was fine getting it set up. But a bronch means anesthesia and an IV, both coming with stupid hospital risks that I don't want to take if we don't have to. So for now, we will just enjoy and appreciate our health until some other procedure is required.

I haven't spent much time on the blog this summer. I think its because Drew's been so healthy (knock on wood) and sometimes I just wanna forget about CF, to the extent possible. We still have two treatments every day, 30+ minutes of inhaled medication and Vest treatments, daily medications at breakfast and dinner, and enzymes before everything we eat. But in between all of that, we're playing at the splash park and with the train table and reading books and watching movies on rainy days. Not spending hours on the phone and the internet trying to get things scheduled and questions answered and prescriptions approved. Its nice to have some time off from CF, even if its just an hour or two of my day.

One final update. Shortly after I posted about Drew's desire to eat anything but peanut butter and fruit, he changed his mind. I'm not saying he will eat anything, but we've had corn dogs, hamburgers, spaghetti-o's, ribs, and chicken curry, and he ate them all without hesitation. Veggies are still off the list, but per some recommendations, i'm going to try to sneak them into things like smoothies and casseroles that he will eat. We'll see!

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