Tuesday, October 7, 2008

Changes?

A large percentage of babies with Down Syndrome are born completely healthy. Many are born with heart defects and other problems that are easily repaired. In a few cases the problems are serious. In Ralph's case, pulmonary hypertension makes DS look like a walk in the park.

Ralph has been pulling off his oxygen at night and when his blood oxygen levels fall his O2 alarm goes off. Nothing really new about this! I've been getting up countless times at night to fix the cannula for many, many months. Some days I wonder if I will ever get a full night sleep again!

Lately things seem to be changing. The alarm is going off less and less often. Even with the cannula off his O2 levels are not falling enough to set off the alarm! During the day, Ralph likes to take the cannula off and chew on it. Of course, I can't monitor his O2 levels during the day, because the meter just doesn't work when he is up and moving around.

So...do these changes mean that his pulmonary hypertension is resolving?

I talked to Ralph's cardiologist's P.A. today and we have a plan. Since he has an echo scheduled for later this month I will cut his liter flow in half, from 1/2 liter to 1/4, for the next couple of weeks. We will then see how the pulmonary pressures look on the echo. As I know from experience, blood oxygen levels don't always tell the whole story where PH is concerned. But, I'm still optimistic that Ralph's lungs are growing and remodeling and his PH may eventually be nothing but a bad memory.

2 comments:

Michelle said...

that would be wonderful if his PH were resolving! I'll keep Ralph in my prayers for a good report at the cardiologist visit.

Debbie Yost said...

We were fortunate to have one of the babies with very few health issues. We never had to deal with the heart problems although I know many parents who have. I hope you are right and that Ralph's PH is resolving! What wonderful news that would be, both for him and for your ability to get a good night sleep. Of course, with that crew, I'm not sure that's going to be possible for a very long time! :) You are all in my prayers.