Pulmonology update

Thursday was our 6 month follow up with our new pulmonologist. :) We absolutely love this new doctor. When I used to visit the PICU I would see him all the time and he is just the kindest doctor.

So....after his examination he said she sounded great! I told him about the croup she had and he wasn't too concerned. We had the oxygen and pulse ox machine at home to manage it so there was no big concerns for recurrent episodes if that happens. (Megan I know you've dealt with your share of this with Elijah)

One thing that shocked me was when he asked if she coughs at night. Well, she actually does. I asked if that is a symptom of asthma and he said it was. Can you believe that? I had NO idea. I know she has been diagnosed with asthma after her bronchoscopy but to me she has never shown symptoms so I rarely think about it. He asked how often this happens and I told him honestly I can't tell you because I never paid much attention to it. He told me from now on if she coughs at night to give her the albuterol inhaler and if that helps get rid of her cough to keep it up as needed. So the past 2 nights I've been paying attention to this and guess what...she coughs before she wakes up. This is a child that has NEVER slept through the night. So now I'm thinking...HELLO it's been her asthma acting up this whole time. Yeah, you should of seen the light bulb going off inside my head. The more I started thinking about the past year the more it makes sense. She likes to be held in an upright position sometimes at night and that has to do with her needing to get more oxygen into those lungs.

So.....I will no longer deprive my child of her much needed asthma medication. I'm not sure about continued use of Albuterol since this is an inhaler. Is there anyone out there that has a child with asthma? If so can you tell me what type of inhaler your child uses on a daily basis. :)

Then I asked about preschool. That's right I said it....PRESCHOOL. No...I do not want her to go to preschool but when she turns 3 she will loose her early intervention program and if she still needs therapy we will have to take her to a public school for that. The Arizona Early Intervention Program likes to start prepping children for preschool about 6 months before they have to go. I know we have a few months before we would have to start anything like that but I've also learned with a DiGeorge child you can't just ask 1 doctor if you can do something, you have to ask several. So this is how I ask....."From a lung (or heart, or immune system, etc.) perspective can she go to preschool?" So the answer is.....yes...if the class is no bigger than 5 children. That will be pretty hard to find in a public school so I'm not banking on her going to preschool when she turns 3. Also, she turns 3 in November during RSV season and she will not be getting her synagis next year so I'm not comfortable with that anyways. So we have decided she just needs to do more playdates. So if anyone lives close and wants to get together just give me a holler! :)

Next week we will be seeing cardiology (my stomach is already in knots) and ortho but I'll post again tomorrow with the pics from our CHD Awareness Party.

I just had to show you the tattoo I put on Arianna tonight. It says "Mended Little Hearts" the name of our support group. She thought it was SO cool!