Flovent inhaler working! :)

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!!!

Visit with Pulmonary

In November 2010, Miss Haven had her 1 millionth sleep study (well not millionth but it feels like it). This was the first time she's ever shown signs of anything. It was minor but enough changes to warrant the need to have her on a Cpap machine - at least to see if it even helps.


She met with the nurse and respiratory therapist to fit a few masks and to figure out which one she liked best. Her mask will only cover her nose - which is nice. The one in this picture is not the one she chose. She didn't like the way it touched the top of her lip and she didn't want to see the blue. We let her make the decision of which one was best for her.


Ultimately she chose this one. It is completely clear and fit perfectly on her nose. I told her it looked like she was heading in to space. She will need to wear this each night once she has built up a tolerance for it. Which I'll explain that in a few.


After being fitted for her cpap she had to have a Pulmonary Function Test. This is a great test to check many things - some are:

Air volume going in and out of the lungs
How fast the air can be moved in and out
How stiff the lungs and chest wall are

The first part of the test was just Haven doing it on her own without stimulation to the bronchial tubes. We were also looking for signs of asthma with her recent chest xray results.

Once she finished the first part of the testing she was given two puffs of Albuterol. Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness caused by lung diseases such as asthma and chronic obstructive pulmonary disease (COPD; a group of diseases that affect the lungs and airways).

Then she had to redo the tests again to see if there was any difference in her lungs.



Here is a video of Haven doing the second part of the testing. She did awesome.


Looks like a 2 year old scribbled on the computer but this was Haven's breathing results.

Ultimately it showed us that she is in the almost normal range...she was still low on her testing but not too bad. Then it showed us the difference the Albuterol made in her test - which was quite significant.

We ended up getting an inhaler - Flovent - which she will use twice a day. This is a steroid to open the lungs. We will use this for one month and see if there is any change.

Then we got another inhaler - Albuterol - which is only used as an emergency type inhaler. This is for the coughing attacks that she might have in the night - they can last for 2 hours at a time and she will sleep through it all but I can't!!! It will help with the wheezing as well.

The Cpap machine will be delivered tomorrow. We will start her off slow - as I'm not even sure I want to do this. Too many variables that no one knows about with ROHHAD and the breathing machines.

Initially she will use it while watching TV but without the machine hooked up. About 20 minutes a day - just to get the feel of the mask. Then we will move to hooking the machine up for about 20 minutes while awake and supervised. Then she will move in to sleeping with it for 20 minutes while we are awake and can check her. Pulse Ox machine is required to be used during this time as well. Slowly we will graduate to 1 hour. She will remain at 1 hour until her next sleep study is concluded and the tests have been read.

I am happy with this decision. I like taking it slow and if I see anything I don't like we can quit and call the doctor. Haven is happy with it too.

Next up is her ENT appointment to check her adenoids and tonsils - but with the statistics of it only helping 60 - 80% of the patients we're not really in to adding another surgery right now.