Thursday, June 10, 2010

Ralph - Cardio Update

Ralph is three. He is fun. He has a mind of his own. He is a diaper escape artist. He totally cracks me up!

He gets medicine at 11pm. Here is what I found last night when it was medicine time:

He had shorts on when I put him to bed, but they were obviously not snug enough!

This is what I found this morning when I gave him his 7am meds:


Do you see him? Under the sheet? I'm laughing just thinking about it now. The sheet was still secure at all four corners. I can't imagine how he got under there without ripping a corner of the sheet off. That boy!
Ralph had his cardiologist appointment yesterday. He's a little rock star at the cardio office. All the ladies fawn over him whenever he shows up. Yesterday was no different.
EKG time first. It is always mildly humiliating...the things we have to do to get him to sit still and not pull wires when he gets his EKG. Bubbles, silly dances, anything to get his mind off the wires stuck all over his chest. This time wasn't so bad.
Then came the echo. We took a walk down the hall to the echo room and they already have a Sesame Street video playing. Ralph wanted to watch the video, but he didn't want to lay down to do it! I convinced him but he kept scooting around.
I used to keep my eyes glued to the echo screen, trying to see if I could guess what the doctor would say about the size of his heart and the pulmonary pressures. But, I came into this appointment very confident that these things were improving, so I only snuck a quick glance.
We don't have to wait long for echo results upon returning to our room. Ralph's heart is less large than it was five months ago. Good news! Especially since he has been off his diuretics for about that long.
Ralph's pulmonary pressures have not improved. They are about the same as last time. This is NOT what I was expecting. It's not terrible news, but it is enough to take the wind out of my sails.
Here is the reality: Ralph has pulmonary hypertension. It is a chronic, often progressive, disease. He can grow out of it, sure. He might not. At this point in time, we cannot afford to let his pulmonary pressures increase at all.
I've been sloppy with his medication schedule, thinking that he was doing just great. Well, no more of that. He is back on a strict 8 hour schedule. And his dosage has gone up, since he is growing.
This is not what I wanted my family to have to deal with when I'm out of the country adopting Alec and Zhenya. I need to put together a little check sheet to make sure the important things like medication get done on time. I'll put that on my list. To make a list.

3 comments:

Regina said...

The cardio. appointments always make me nervous! I'm always hoping to hear good news but preparing for the worst. I'm sorry his pulmonary pressures weren't any better. I know that sinking feeling! He seems to be doing great otherwise! Looks like he's ready to get rid of that diaper ;)

TherExtras said...

Me, too, :( about the pulm pressure. Cheering myself with the thoughts of how happy and inventive he is for sleeping in the buff.

Barbara

Marianne said...

Okay, those pictures crack me up (no pun intended)! LOL! What a ham!