Sunday, June 21, 2009

June Pulmonologist visit

On Wednesday, we went to see Dr. G2, Brooklyn's pulmonologist. The basic stuff first: she weighed in at 19.8 pounds and was 29 inches long. Her respirations were 36, and her oxygenation was 95.

Just like the rest of Brooklyn's doctors, Dr. G2 was very pleased with her recent weight gain, and was happy that she has caught up on her motor development!

Let me explain what has been going on with Brooklyn's laryngomalacia, since I know I haven't blogged about it much lately. She still has a stridor much of the time. Sometimes it is really loud, but sometimes it is just moderate. It is usually at it's loudest when she is walking around and playing and when she is sleeping. She had stopped making that really deep, jaggedy sounding stridor that sounded like she was trying to catch her breath about two months ago, but now it is back. We hear it probably 10 times a day lately. On a positive note, she does have periods of time where her breathing is completely quiet, sometimes even when she is sleeping.

Over the past couple of weeks, Brooklyn has started having some intercostal retractions again. It never lasts for very long - I'm talking less than a minute at a time. Sometimes it's when she is playing and working really hard, but sometimes it's when I am just holding her and she is sitting still. We hadn't seen her have any retractions for months, so I was shocked when she did it when I was holding her before bed the about 2 weeks ago. I asked my mom if she had noticed this at all, since she keeps her during the day. She said that yes, over the last couple of weeks she had probably seen Brooklyn have retractions about 6 or 7 times. I don't understand why this is coming back all of a sudden. We had thought she was completely over that.

When we saw Dr. G2 at the end of March, he had told us that Brooklyn should completely outgrow her laryngomalacia by the time she was 14 months old. Obviously, this has not happened, and she is 15 months old now. Not only has she not outgrown her respiratory problems, in some ways they seem to be worsening.

So, needless to say, I was ready for our appointment with Dr. G2. Throughout the entire office visit, Brooklyn was playing and walking around the exam room. This was a good thing because Dr. G2 was able to hear what her breathing sounds like and how noisy she can get when she is being active. (At our last appointment, Brooklyn was really quiet and wouldn't crawl around so that he could hear her!)

Dr. G2 said that he doesn't know why Brooklyn hasn't outgrown her laryngomalacia. I questioned him about it two different times, and he just didn't have an answer for us. He said that Brooklyn may have to have another bronchoscopy soon so that he can look at her airway again and try to figure out what is going on. He wants me to email him a video of what her stridor sounds like when she is sleeping this week. He said that he will decide whether she needs another bronchoscopy after viewing that.

He increased her Bethanechol dosage by 25%. Dr. G2 always gives us a copy of the report that he sends to her doctors after each appointment, and the report says this is because "this medication may have an anecdotal effect of increasing airway tone and therefore help with some of the malacia symptoms." So we are hoping for a side effect. Weird. He said that he isn't too worried about the intercostal retractions since she is only having them for short periods of time.

So, to sum up: No answers. Possibility of having to put Brooklyn through another surgery. And did I mention no answers? I am so frustrated with being told Brooklyn will outgrow her laryngomalacia at 4 months...6 months...8 months...a year...14 months....and then it doesn't happen. Why not? Dr. G2 didn't speculate on when she would get past it this time. Not the positive visit I had hoped for. Sigh.

1 comment:

Hope said...

((Hugs)) Laryngomalacia sucks. Ava isn't outgrowing hers either, so I feel your pain (or anxiety). I'm hoping you get some answers!!

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