aubrie's surgery

[Guest guest]

Aubrie had her surgery yesterday. With all the illnesses and bad doctor

experiences on the list lately, I'm happy to report that we had a

wonderful (or as good as it gets with CHARGE anyways) experience. We go

to St. Louis Children's Hospital. Everyone there, from the cafeteria

workers to the surgeons, go out of their way to be cheerful, helpful,

etc. We had only one glitch-- we thought we had a 12:30p surgery time.

So we were planning on leaving Tue am. Well, when the nurse called Mon

afternoon with instructions, I found out we had a 7 am surgery time. So

we hustled around here and left Mon night for a hotel ( Mc

House was full). It turned out better in the long run because we got a

winter storm through the night Mon and Tues am.

As far as the procedures tho, Aubrie did great. They did not put shunts

in her tear ducts -- just probed and opened them with a balloon. They

did whatever it is they do to styes -- lance, cut out, whatever. The

unknown lumps on her chest were removed and sent off to the lab. Her

Gtube was replaced with one a bit shorter so we hope to have less

leakage and movement. They took blood to test for cow's milk allergy

and did a heart echo. Of course, I don't have any of the lab results

yet.

Aubrie was eating cheerios in the car on the way home. She was so

hungry! She's never fallen asleep in her dinner plate before, but she

was dozing off as she fed herself cheerios. This morning, she's a bit

tired but doing great.

Thanks for all the input as far as weaning from the night feedings. I

guess I should clarify that for Aubrie this also means weaning from the

tube totally as she's only fed at night now. When we took her off the

night feedings a week or so ago, there was a big increase in her daytime

oral intake. Now that she's back on the tube, her daily oral intake has

declined. We definitely have to get rid of all tube feedings in order

to give her a chance to eat more. It seems like a catch-22, but one way

or another we will work it out.

I have the Danny-sling that we used in Aubrie's crib when she was

littler. It is a fabric sling-type thing that ties onto the crib rails

and then the child is velcroed in between the legs. It kept Aubrie from

scooting all around and getting tangled in the tubing when she was

smaller. It gave me peace of mind and she felt comfortable being secure

all night. We don't use it anymore. It's for kids up to 13 lbs I

think. If anyone is interested in it, I'd be happy to send it on. The

other thing I liked was that it kept her facing up in her bed. With the

head of the bed elevated for reflux, I didn't want her to scoot herself

upside-down and make it worse.

Take care -- I hope everyone's getting some sleep out there!

Zzzzzzzzzzzzzzzzzzzz....

Michele

Aubrie's mom (14.5 mos) CHarGE

[Guest guest]

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I think a Bard and a MicKey are basically the same -- just a different

brand and slightly different design. The MicKey has a water-filled

balloon which holds it in place. That's good for us because we can

change it at home if we have to. No special tools needed.

Michele

Aubrie's mom