1-4 h update

[Guest guest]

Well things are definitely looking up around here. h's sats have stayed a

lot better during the day -- even off bi-pap for around 3 hours! Overnight we're

still having some issues with hovering at 87-91 for a few hours. I really

believe the solution to that is switching to an LTV, but the thought process

around here is to wait until she's well to do that. I can somewhat see what they

mean because I know how much easier it is to get the kids used to a new machine

when their well. The question is: wouldn't she improve faster with better

ventilation? Thoughts on this are welcome.

I do believe we've figured out the BP issues and the answer was unbelievably

simple. The first night we were here they took h's BP on her arm in the ER

and it looked good ( a little elevated but she was sick so that was reasonable).

Once we moved to the CCU they put it on her lower leg/ankle. I questioned that

because I'm sure the circulation there isn't good at all and they said that it

was fine. That's how they did it until yesterday. A nurse yesterday at 5am got a

BP of 79/27 and at that point I KNEW it wasn't right. I told her to do it again

and it was close to the same. I made her do it on h's arm and we got a very

nice 109/63. We've only had one *low* reading since and that was 91/78 and even

that is on the low end of normal. So problem solved?

The heart rate issue is ongoing. They are getting a 24 printout here (for sats

and heartrate) and then once we get home we're going to do a 48 hour holter

(sp*) monitor. HOWEVER.... Thanks to the wonderful (who can raz me about

the war issues all she wants at this point) I think we may have found the

culprit! Miss called from all the way across the atlantic to ask if

h's potassium levels had been checked. Well.. no they hadn't. So I came back

up to the room and started adding up what's in the tolerex and multi. There have

been no fluids w/ potassium (IV only hooked up for meds and then flushed w/

saline) so for days that was all she was getting. What I came up with is this:

The RDA for a kid h's age is 1600-2000mg/day. What h was getting was a

total of 440mg/day. On top of the low intake she had the antibiotic pooh issues

and some vomiting (which could also have been caused by low potassium!) which

would further deplete her levels. This explains why when we

came in her HR was normal/stable and after a few days it was erratic w/ periods

of tachycardia and periods of bradycardia. Right now I'm waiting for an order

for a serum potassium level and possibly (probably?) some supplimentation! I

will still move forward with the monitoring because my concern is permanent

damage due to drops in potassium during illness. Couldn't this explain why so

many of our kids get sick and THEN develope bradycardia episodes?

So that's my novella for this morning *LOL* Thank you to everyone who has made

it this far and for those who have been checking for updates and saying prayers!

Love and Hugs

Jeni