It's 10:30 pm. I'm mentally done for the day. Actually I've been done for awhile! But I can't go to bed yet.
Ralph gets medicine in one hour. He takes Sildenafil every 8 hours - 7:30 am, 3:30 pm, 11:30 pm - for his pulmonary hypertension. He'll be soaking wet because of the Lasix that he takes at 7:30 pm, so I'll have to change his diaper and possibly his PJ's and bedsheets, too.
It's getting old.
I know of a few other kids with DS who have pulmonary hypertension. It's a terrible disease. Ralph seems to be outgrowing it! (I'm almost afraid to type that, but I don't believe in jinxing.) Some other kids...not so much.
When I start feeling weary, or sorry for myself, I like to think about people like Parker and his family. When you send your kid into a heart cath procedure expecting improved numbers because he's looking SO healthy lately...and you get a slap in the face...it just sucks.
Parker is touring the medical specialists again so some good friends have put together a Scentsy giveaway. Could you spare a 5 spot for a darling boy with Down Syndrome and a case of pulmonary hypertension that won't let up? You could win some yummy holiday scents!
2 comments:
We did that with sidenafil too. Then we were cut back to 2 doses and now my little J is not on it! But I'm a little scared to find out his numbers at his next echo in December. Hopefully they are good! I'm glad your little one is out growing the PH too! It is a lot scarier than dealing with DS!
I almost forgot! I'm leaving my email. It's srmctavish@msn.com. I would like to talk more about our boys and the similar experiences we've had and they are close in age, only a month apart. You can also look me up on facebook if you want!
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