Since Haven's treatments with chemo she has done so remarkable that we are starting to have a "normal" life...whatever that means! :) But she is only regularly scheduled for hospital visits for IVIG every 6 weeks and then has her Endo and Pulm appts scattered throughout. Much better than 2009-2010 when she was at the hospital 4 days a week.
Meeting with her Pulmonary doctor last week was definitely good news. Talking with him - if Haven didn't have ROHHAD he would probably not put her on a cpap machine at all. Her numbers were within normal levels for him but with ROHHAD he just feels it's better to be preventative than reactive.
In 2006 we started going crazy wondering what was going on and then in 2007 ROHHAD and Cancer took over our life....everything we did was reactive. A symptom would pop up and we'd have to attack it with no time to think about what we were fighting and where to go after. Now that Haven is at a point where she is stable and we aren't chasing symptoms we're able to jump ahead of ROHHAD and kick it's butt where possible.
Tackling the Cpap machine:
In an effort to be preventative we have begun to work with Haven on a cpap machine. It is more like a testing phase for her than a necessity. Since she isn't having any major breathing issues and is showing no signs of central apnea at this point we all feel it's good to be precautionary.
A Cpap machine has a setting of 4 - 20. With that, 4 is the lowest it can go. Haven's machine is set at a 5. So just one point above the lowest setting. I am much happier knowing this!
- For the first week Haven has been instructed to wear the mask (without oxygen) while watching TV for 15 minutes each night. Just to help her get used to feeling it on her face.
- For the second week Haven has been instructed to wear it for 30 minutes with oxygen while watching TV. Again just to get her used to it.
- The third week she is to wear the mask for 30 minutes while sleeping with oxygen.
- The fourth week and so forth she is to wear the mask for 1 hour while sleeping with oxygen.
At most Haven will stay at 1 hour each night until her next sleep study. At that point they will monitor her to see if it is at all affecting her sleep. She definitely will not go on a full night sleeping with the cpap until all tests are done and we know it's not harming her. I've mentioned before that I am not a fan of the cpap and that I do believe it can cause harm with the ROHHAD kids if not watched very very close. Just my beliefs after speaking with a few other parents and her doctors.
Although Haven's breathing has definitely gotten better since the inhalers we are still moving forward with this. However, her dad and I are slowly having doubts that she even needs the cpap at all yet. But it's always better safe than sorry.
Once we start actually testing the machine at night I will update everyone on how she is handling it.