All went well at Brooklyn's appontment yesterday. The pediatric pulmonologist decided not to do the scope on Brooklyn right now. She goes back on July 30, and he may do it then if nothing has improved.
He said that the noises she is making actually sound more like laryngomalacia than tracheomalacia, but he can't be sure without doing the bracheoscopy. It's the same thing basically, just higher in the airway. He put her on two new medications for her reflux, because he said that her reflux is causing her airway to swell and is making the problem worse. If this doesn't help, the scope will be needed to make sure there are no other problems such as growths or tumors causing her breathing issues. Her respirations were still high, and he pointed out what he called "intercostal retractions" (sp?), where her diapraghm kind of goes in and up under her ribs when she breathes. It means she is working too hard to breathe. He told us to watch her color and explained what "respiratory distress" looks like so we would know what to look for in case that happens. We are not to lay her flat on her back as this can cause the airway to collapse down further.
On the positive side, her oxygenation was still 97%. She had more chest x-rays and they looked great as well. She was so brave for them....she didn't even cry!
She weighed 9 pounds, 13 ounces and was 22 1/4 inches long. She is now 3 months and 2 weeks old. The doctor wants to keep an eye on her growth because she is so small. She may be burning off too many calories by working so hard to breathe, causing her not to gain enough weight.
I appreciate that the doctor didn't want to immediately do the invasive procedure that we thought we were coming to the appointment for. He said that it is very invasive and doesn't want to do that to her if he doesn't have to. That's good. I don't want her to hurt or have procedures done that she doesn't need. But I still worry about what could happen between now and her next appointment, if things don't improve. All of these doctors warning me that she could stop breathing is scary as hell.
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3 comments:
Thanks for the update. How scary -- as if worrying about SIDS and all isn't enough pressure on you huh! Hopefully she will grow out of all this. Edie make a weird noise too that seems to have just stopped -- it was like a seal or something. It freaked me out but she grew out of it. Since they are 3 days apart maybe Brooklyn will start breathing normal soon too. Those kids are always freaking us parents out. Good luck SAM
I only just back to see how Brooklyn went.
Maybe it is the reflux like the Dr said.
What a brave beautiful girl she is.
It can be very scary when they struggle to breathe.
One thing i know is if the Dr was really concerned he would not have waited to do the procedure so that is a kind of positive...invasive or not he would done it if he was more worried.
I will be thinking of you.
I was lurking and found your blog about your daughter having laryngomalacia. My daughter is approx. the same age and sees a pulmonologist for the same thing. You aren't alone! Those stridors can be scary. Good luck!
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