Asher's HOME! More autonomic nerv. system ?

January 23, 2005

Hi all,

Asher got discharged this morning. Yea! We are home and very exhausted but HOME!

He is doing much better - able to keep his 02 sats up where they should be most

of the time and his lungs are clearing. We were sent home with a nebulizer and

xopenex (thanks Tom!)and Biaxin... and appointments with the pediatrician

tomorrow, the pulmonologist on Friday, and we have to schedule a sleep study. We

decided to come home without the pulse/ox and I hope we made the right decision.

I think it would've driven me absoutely batty right now - the pulmonologist said

that, if we decided we wanted one, he'd write a script on Friday or if we called

him. He kind of discouraged us from getting one but also said he'd understand if

we wanted one and would help us get one.

This hospitalization raised some more questions for me. Rosy, you might be

particularly helpful in this area, but I'm sure others will be as well. It seems

to me that Asher's whole autonomic nervous system (his lungs, his heart, and his

GI system - lots more residuals from feeding so I assume his gastric emptying

has slowed down) is just not " up to par " right now.

1. Asher's heart rate dropped to 55 for quite a while during the night. His

parameters were set at 60-160. I'm struggling as to whether this is " normal " or

whether this is another issue that has to due with his autonomic nervous system.

How low Rosy has Max gone? I know you've struggled with this issue and would

love your feeback.

2. His 02 sats are good much of the time during the last 24 hours but they drop

below the paramenters at night (to 90, 91). Then the alarm went off, I changed

his position and he was fine. Is this something to be concerned about? I just

can't imagine getting up every 15 minutes or so to change his position all night

- I'll be in the hospital (probably the padded room) if I do that! The

pulmonologist is not too concerned but does say that if I see his head being

down on his neck, etc. I should change his position. And he recommended a sleep

study which we will schedule and will probably take months to get into...

Any thoughts on this issue?

I really appreciate all the good information and all the well wishes! This was a

hard week!

Anne R

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