Re: Digest Number 108

[Guest guest]

In a message dated 12/9/1999 11:05:39 AM Eastern Standard Time,

bcbrooklyn@... writes:

<< This will probably be my last message before Hannah's surgery so here's

wishing everyone a very Happy Holiday! >>

Cheryl, Barry & Quinn:

Just a note to let you know we are all pulling for you! Our prayers are

with you!!

(Mommy to Karlee, 7mos. mds)

[Guest guest]

Carla:

Thank you for your prayers for Hannah Quinn. We have a lot of people

praying for her and I just know that she will come through this surgery

OK. As far as complications go, I think she will fair well and I do

intend on keeping up with the quarantine after she comes home. But one

never knows...

I have read a little about the nuritional therapy, Nutrivene, etc and

have read both sides of the issue. I don't even know where to get some

of these vitamins, whether they are covered by insurance, does your doc

have to prescribe them, etc. Hannah gets Polyvisol every day, but if

these other vitamins will keep her healthier than I might consider

trying them. Any info you or anyone on the list can provide will be

helpful.

Everyone:

Hannah had another appointment with the cardiologist Wednesday because

he wanted to do xrays and check her out since her symptoms were

intensifying. Last Wednesday he put her on captopril, 5 ml, and it

didn't seem to change anything. Her respirations, even at rest,

continued to be around the 65-75 mark. On Monday he doubled the dose of

captopril, and by Tuesday she seemed to be getting a little better as

far as respirations and sweating were concerned. Anyway he told us

yesterday that Hannah is a great candidate for surgery next week, that

she is in far better shape than most babies getting ready to undergo

this operation for avsd. He said she is bright, alert, strong, and

" looks good " and he didn't think we had anything to worry about. He

also said she is not in congestive heart failure yet like I thought.

And he said that her lungs looked the same as they did a month ago, so

no changes for the worst there. She had not gained any weight, still at

10 lbs 3 oz, and he said he almost attributed it to her MDS, and not her

heart defect. So that was all good news. Her surgery was moved back

one day due to a schedule change, a baby was born this week needing

immediate surgery, so everyone got moved back a day. In the meantime,

no ng tubes, thank goodness, just keep up what were doing and take her

in for preop testing next Wednesday. They'll do chest xrays, an echo,

bloodwork, etc. I'm a little upset that they moved her from the morning

surgery to the afternoon surgery because I can't feed her for six hours

before her surgery. That means that I'll have to deal with a very upset

baby all morning before her surgery, rather than waking her up in the

a.m. (which it was originally scheduled for) and whisking her off to the

hospital with her pacifier for only a short time before she is sedated.

I'm still fighting for the morning surgery because there is a 12 year

old girl scheduled for the morning. I've asked them to switch the two

but I don't know. Hannah's was the last one to get rescheduled from

Wednesday so this 12 year old's original schedule has not changed. I've

asked them three times to switch them and I'll find out today. I know I

may sound whiney, but they just don't understand that when Hannah is

hungry, and since she just grazes when she eats, she gets really upset,

and I have to race to get a bottle warmed for her. Sometimes this can

be a half hour after her last bottle.

Anyway, we're hanging in there. I've done no Christmas shopping yet

this year since we've been quarantined and we have four other kids, all

out on their own. I think there will be money in the stockings this

year!

This will probably be my last message before Hannah's surgery so here's

wishing everyone a very Happy Holiday!

Cheryl, mother to Hannah Quinn 3 mos MDS, Rob 22, Lyndsay 19, stepmother

to 19, Marta 29

[Guest guest]

Hi Cheryl & Barry,

I will be saying a prayer for Hannah. I hope everything goes well. Have a

good Holiday.

Jeanne (Mom to Nicky 12, le 10 and 5 MDS)

[Guest guest]

>I have read a little about the nuritional therapy, Nutrivene, etc and

>have read both sides of the issue. I don't even know where to get some

>of these vitamins, whether they are covered by insurance, does your doc

>have to prescribe them, etc. Hannah gets Polyvisol every day, but if

>these other vitamins will keep her healthier than I might consider

>trying them. Any info you or anyone on the list can provide will be

>helpful.

Cheryl and Barry,

There is lots of discussion on this topic in the digest. Look up # 108

and #95 to start. Also you can easily order nutritional supplements from

International Nutrition or Nutri-Chem off of the internet. Right off hand, I

don't have the addresses, but will look them up.

Carla

MO Maggie (3 1/2-mds)