Things went pretty good overall.
Her BMI has dropped to 50, mainly because she grew 2 inches in height! I've had a lot of people tell me lately that she has gotten soooo tall, I guess they were right!
Her nose is yucky, again. So, in thinking of ways to help keep her nasal passages cleaner (she has an extreme fear of sprays/and or water going in her nose/so we don't do rinses)....her doc came up with the idea to try hypertonic 7%, twice a day, with a mask. She already does all her nebs with a mask, so that was no change for her. She tolerated it well in clinic and did this morning also. She coughs some during the treatment and has since coughed a few wet coughs this afternoon.
She still hasn't got the hang of doing pft's, so we don't have any numbers for that. They did her normal throat swab, results will be next week.
Discussed the H1N1 vaccine, they want her to have it as soon as we can get it. We were not sure if we were going to give her to her, but after talking with her doctor, it sounds pretty rough. They have many kids pretty sick with it. They stressed to me how hard it hits the lungs. So, I guess as soon as we can find it, she will get it.
Due to the fact that Zoe won't use an inhaler for her albuterol (she nebs it), now with the added hyper, she sits for 90 minutes in order to do albuterol, hypertonic, pulmozyme, then 30 minutes of vest. A long time for a little 5 year old girl to sit, but she is a trooper, takes it so well.
Speaking of Ms. Zoe, she is begging me to play with her.....sooooo....off I go!
Jada
Zoe for Life.... Our journey with Cystic Fibrosis....
Is your clinic okay with doing pulmozyme and vest at the same time? Some are dead set, mine encourages it. Then, you could be working on two things at once.
ReplyDeleteI can't imagine sitting that long. I get bored sitting there for 30 minutes doing HTS and vesting.
ReplyDeleteA big hug to you little princes and to a wonderful family from Italy!!
ReplyDeleteHey Aunt Jada and Uncle Scott, it's Aubrie. I just read most of the blog, i'm sorry you're having siuch bad luck lately.. Things aren't so amazing here either. I hear Nana's operation went okay, if i'm correct. I was very glad to see all the updated pictures of my cousins :) I miss you guys and i want to come visit sometime soon. It being my senior year, i'm going to get pretty busy. Please write back, right now i'm in my enior Seminar class and i've decided to do my big Service Learning Project on CF. I want to use things about Zoe in my slideshow and help out someway, raise money, things like that. I would really love to her from you guys! love you.
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