Day 8 - PH

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!

'tis the Season

A biotech company called me the other day. They wanted to make certain that they have current insurance information for Ralph. You see, cold and flu season is fast approaching. Ralph's pediatrician wants him to have monthly Synagis shots again this year.

Synagis protects against RSV, a respiratory virus that can cause life-threatening illness in premature babies and those with lung disease. The series of monthly shots begins in October and ends in March or April. The good news is that our insurance will normally cover Synagis if the doctor writes a letter stating that it is medically necessary. The bad news is that the co-pay is $250 per month, at least it was last year. Probably more this year because Ralph is bigger. We only managed two shots last year.

Ralph DID end up in the hospital with a respiratory virus last year, but it wasn't RSV, it was adenovirus. I'm not sure what to do this year. Ralph seems to be so much stronger and healthier than ever before. But, babies and children with Down Syndrome are especially vulnerable to respiratory viruses. Is spending $250 each month to protect against ONE virus a wise move?

Oh, and the flu shot...what to do?