Peter - Carepage - January 28th, 2008

I woke up with a sinking feeling today, sort of sick to my tummy from nerves and quite anxious about the echo. I wish I could say my fears were unfounded, but they weren't....maybe a mother's instinct? Sorry if this is repetitive to all you who checked in with me today. But here is the synopsis. Peter got a cold on Friday which apparently is now "acute bronchiolitis" (not sure how that is different from bronchitis....still need to look it up). As a result, his lungs are "damaged". This caused his saturations to drop to the 80's, which in turn caused his pulmonary pressures to shoot up so over all the echo didn't look good. (His pressures should be under 30 and they were around 70) He is still breathing ok, but Dr Duster (our cardiologist) said if it deteriorates he could end in the hospital on a ventilator. Dr Duster says "the junk" is going around and is lasting 4-6 weeks....I am soooo hoping that is not the case! I'm hoping our beloved pediatrician Dr McCaffery will call me back - but either way we will see him tomorrow. When I gave the nurse the run down she almost had me going in for an x-ray - but decided to have us see Dr. McCaffery tomorrow first. Dr Duster also said given where Peter is now, he will have pulmonary hypertension for the rest of his life. He is optimistic it will remain reactive and not fixed which is the fatal form. He wants to get Peter to the point that he can live in Colorado Springs without oxygen during the day - but probably on it at night for ever. However, if he doesn't improve by July/Sept will have to put him on medications. The med is actually the active ingredient in viagra - so that should make diaper changing interesting! We may also get to the point of having to move to sea level so that Peter can have quality of life. So with that said - I need a nice glass of wine and a good cry! Then I can pick up my pieces and keep putting one foot in front of the other.....I have so much to be thankful for that I need to remember that even when I feel discouraged. Will keep you posted on Mr. Peter Bear over the next several days/weeks. Thank you for all your continued prayers! God knows when is the right time and way to answer our prayers - just once in a while I wish it was exactly like I asked!! Hugs! catherine