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Wednesday, November 12, 2008

It's Like the Weather In Chicago.

Dovi's blood pressure, that is.

If you don't like it, come back in an hour. It'll be different. As in completely different.

One of the lovely symptoms of FD is blood pressure instability. Dovi's blood pressure can fluctuate from insanely high to insanely low and back again in a 15 minute time frame.

I cannot tell you how many times we have had to gently push the nurse's bugged out eyes back into their heads upon taking his blood pressure in the morning when he is inpatient at the hospital.

"You mean that 230/150 is not normal? Neither is 65/35? Come back in 15 minutes. We'll try again."

Now this is not to say that Dovi walks around all day with these insane blood pressure readings. What it does mean is that Dovi is on no less than three blood pressure medications given at different times of day, all trying to get him to an even keel. There's the 4 am one to lower it and the 6:45 am ones to bring it back up, as well as the 12pm one to keep it up and the 7 pm one to lower it back down again.

And overall it works. But there are definitely times during the day, especially if he has fallen asleep briefly, when he will need Pedialyte to bring it back up. We usually know that by...ummm...the falling over/drunk looking walk. No, Dovi did not enjoy a nice bottle of wine. Or two. He merely just woke up.

Why is this all on my mind? Dovi's amazing, fabulous nurse, who allows us to sleep five nights a week, despite reading tons and tons of literature on FD, cannot wrap her head around this concept.

She called us this morning at 7:15, after she left at 6:30, just to tell us that Dovi's blood pressure was low when she took it at 6:15 before she left. Right. He gets his meds at 6:45, and that nice blood pressure of 65/35 will pop right back up.

I seriously cannot understand why she cannot understand it. Whatever. We slept all night. Unlike Saturday night when Dovi woke up at midnight, 1 am, 4 am, and was up at 6am for the day. All that waking equaled two pajama changes, two linen changes, a bunch of diaper changes, and very little sleep for two tired parents.

Lovely.

1 comment:

Raphi said...

Put Dovi on the camp schedule, it works like a charm for a good nights sleep!! jk :-)