I had taken Ayla to her pediatrician last week and he heard a crackling in her lungs. For someone who doesn't have a "cough" whenever I hear a cough (wet or dry) my mind starts going. Some people just cough with CF and coughing is good to bring up some of those thick secretions that can get gunked up in the lungs but Ayla doesn't and so if she does it makes me think....
He wanted to take the "wait and see" approach to see if that would get cleared up through coughing. But as much as we love her Dr he is not a Pulmonologist and when it comes to the lungs they are the experts. So I took her back to him on Tuesday to see if he still heard that noise and he did. I left there and got on the phone with Nemours Children's Clinic.
I had been pondering bringing her back to Nemour's instead of Shand's for a few weeks now. I drive 4 hours to go to Shand's and I have been seeing a student Dr and really don't like that. Having resident's in the room is all fine and dandy but I would like the person with the credentials to be making judgements about my daughter's condition. And the benefit of having a specialist locally is very important for reasons above.
So yesterday I took her to Nemour's and saw a new Dr. who had come from AZ. She has worked in 3 CF centers and even has some patients flying from AZ to book appointments with her (impressive!)!! She spent a lot of time with us and Ayla really took to her. I really got the sense that she "gets" CF.
We talked about her cough and any changes that have been made over the last month. I told her that she was taken off HPTS when we were at Shand's last. She was having a bad reaction and coughing to the point of vomiting.
She said that she may need to get back on that. Hypertonic Saline has 2 main benefits:
1. Causing coughing
2. It works to correct the Salt chloride level in the channel (people with CF need extra salt)
But...she said she shouldn't be coughing to the point of vomiting. Albuterol should work to protect her lungs if given correctly prior to doing the HPTS. And albuterol given through her spacer (device to administer albuterol) isn't doing a good enough job. She recommended Nebulized Albuterol. So between that and the HPTS and Pulmozyme we are up to 3 nebulized meds per dsay, 2 of which are twice a day and the other once a day.
If you know anything about nebulizer's you know that you can't mix meds in the little cups that attach to the hosing, and you have to keep them separate and they must be disinfected after each use. So for three different meds given multiple times a day and vest therapy to do for an hour a day we are going to be busy folks.
But whatever we need to do to keep our girl healthy-is considered a pleasure.
The Dr. also ordered a chest x-ray and ct of the lungs if the xray doesn't show what we need to see. We had that done this morning. I am no doctor but I thought I could see some scarring. We will see if I am right when the Dr. calls. She also did a throat culture-we won't have those results till next week.
I feel like we have a plan in motion and really feel good about the change in Docs. Now if we can figure out what this noise is and how to treat it we will be good to go!
By the way my child is a TROOPER! She was not happy about having the culture done yesterday and covered her mouth. The RT talked her hand away and she agreed to do if she could do it herself. He put her hand on the swab and he did most of the maneuvering but she really thought she was cool and in control herself. She didn't shed a tear. Then today getting the x-ray I stood behind the glass (b/c of the baby bump) and this nice x-ray tech gave her a stool and she stood tall and took orders like a pro. I was able to see the images so that was cool. I have to admit she may be getting to big for mommy's liking!
Will update with more information as I get it.
1 year ago