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Quick Update

Posted Mar 15 2013 5:34pm
This is just a quick update that Ainsley is feeling better. The fever broke. She still has an awful lot of secretions though and a runny nose. She slept through the night without requiring care for the first time in who knows how long, 6 months at least. Steve and I were remarking to each other, "Oh this is what a good night's sleep feels like." In part that may be due to the We are sticking close to home and cancelled therapy. Luckily it is a non-school day or she'd be kept home for the 6&1/2th day. This is the most school she's ever had to miss (except for surgery recovery).

Yesterday I got the lab results and it turns out in addition to the ear infection brought on by Human Metapneumovirus her trach culture grew pseudomonas , a bacteria that is frequently colonized in trach kids. The pulmonologist wants her on a 14 day course of Tobrimycin delivered via Nebulizer. If you can believe it Ainsley has never used a nebulizer or received any breathing treatments of any kind. So we are working with our home care people to get the equipment delivered, hopefully today.

I learned recently, by chance from the trach forum, that Tobrimycin is said to potentially cause ringing in the ears that can lead to hearing loss. A frightening side effect for a non-verbal child who cannot complain of ear ringing (remember she didn't even complain about the "raging" ear infection.)So I was able to ask about that when they said they were prescribing Tobi. The pulmonologist said (via nurse) they did the study that concluded there was a risk for hearing loss and that it was based on systemic (oral) Tobi, and that inhaled Tobi poses minimal to no risk. The same would be true for Tobridex drops used to treat tracheitis. The concern is when the whole body absorbs the med and it gets into the organs.

With any luck we will do our first nebulizer treatment today. Even without it, Ainsley is smiling and that is what I love to see. Ainsley's had a lot of secretions these last few months so it sure would be nice if this got her back to what I call her "summer baseline".
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