Well....after having a couple of weeks since my initial meetings with Haven's doctors and getting in to fit her on the cpap we are feeling much more comfortable with Haven's recent sleep study and the results.
Since Haven's treatments (which you can read about to the right of the screen) she has changed drastically. Many of her symptoms regressed or went away entirely. Again telling us what we already felt and that we are happy with the decisions we made to go further with her chemo. But then we had a bad sleep study....right?
When I spoke with her doctors over the Christmas holidays I was definitely concerned that her sleep study had changed so drastically from only 8 months previously....but then I was reminded of a few areas:
1. This was the first sleep study EVER that we agreed she slept like she did at home. None of her other sleep studies really made sense to us since she barely slept.
2. January 3rd Haven had a chest xray showing a bronchial infection of some sort. She'd had a cough since November. Her pediatrician gave her an antibiotic to take for 5 days. It did help a little.
So maybe Haven has been the same throughout all the years but never really had a good sleep study. Plus she's never had a cold or cough in her life so this was new to us.
Haven did the PFT (Pulmonary Function Test) - first without an inhaler and the second try with the inhaler. This gives the Pulmonary doctor info as to whether or not her bronchial tubes are narrowed in due to inflammation or something - possibly like Asthma. Although we have been told she does not have Asthma.
Haven did test better AFTER the inhaler of Albuterol. So it was confirmed that she would take two different inhalers -
Flovent - which is a steroid to open the tubes and she will use this twice a day for one month. Then we will check to see if she is doing better.
Albuterol - just for emergencies - like if she is having a coughing fit at night or something.
So I'm fine with these - nothing major. My brother lived on an inhaler for years due to asthma so I understand them.
The doctor said it could take 3 weeks of Flovent to notice a difference.....
Medically I can't say there is a difference because I don't have her hooked up to a test each day but after one week Haven has minimal coughing during the night and is definitely feeling much better. We haven't had to use the Albuterol yet - which she is happy with because she says it tastes funny.
Now if we can just have a full night sleep - sleep walking is amazingly draining!!!