Re: Open Heart Surgery (discussion)

March 27, 2007

It would be kind of interesting to me, if we kind of took a

vote........maybe we have already??, to see what percentage of the group has

children with

heart problems... what percentage has bowel problems....and what percentage has

no health problems........

~~Angel~~

Mom to , 14, MDS/HD

Lance 18, Ty 15, 12

Jaeda 10 & Shayne 4

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March 27, 2007

Misty,

Dylan is going to be 4 on May 1st and had his first open heart surgery

at 4 months old. He has a complete AV canal defect. We live outside of

Austin Texas. I am sure that most Children's hospitals are just as good

as the one here. So I will tell you the process we went through. The

day of the surgery after they take your child away, a hospital worker

should visit with you and your family. The lady that met with us was

awesome. She brought in diagrams and presents for Dylan. The diagrams

were of a child and what they would look like after the operation. They

explained exactly what each tube was and what it was for. They called

us as soon as they got Dylan put under, then after he was put on bypass

and then again about every 30 minutes. They call the waiting room and

ask for your family and tell you how it is going. Then the last call is

to tell you to meet them in the hall so you can see your daughter. This

will be very BRIEF because they will be manually breathing for her.

Then they will take her to the Pediatric ICU and hook her up to a

million machines and monitors. They will put her on a respirator so the

machine can breathe for her instead manually. This will take about an

hour and then they will come out to get you so you can see her.

After this time you take it one day at a time. I never left the

hospital. I stayed right there in Dylan's room. Each day that goes on

they will remove tubes. They will then do what the call exgavate her

off the respirator. I hope I spelled that right. Basically the process

is to remove her from the breathing machine and see how she does on her

own. Then it gets to the point where they will need you to try to feed

her because the feeding tube will be removed. Dylan would not eat and

they told me if he did not start that they would have to put the feeding

tube back in, which meant Dylan would have to stay in the hospital

longer. I asked them to please let me hold him and once I was able to

do that, he drank the whole bottle.

Remember kids bounce back so FAST. Dylan went in on Tuesday and came

home on Sunday. Just remember to take her favorite toys up there, see

when you can hold her and it will all be over so fast. Also remember

that they probaly will not sew up or staple the chest. They just use

the sterie strip to close the cut. That was surprising but it works

fine and it so much better because it heals on its own and helps with

not making more scar marks.

Take care and let me know if you have any more questions. Abby will be

just fine.

Cheryl

________________________________

From: MosaicDS [mailto:MosaicDS ] On

Behalf Of Kristy Colvin

Sent: Monday, March 26, 2007 3:13 PM

To: MosaicDS

Subject: Open Heart Surgery (discussion)

Misty

It is great to hear that Abby is doing so well! I know that you are

worried about this surgery. I think all parents who go through it are!

EVERYONE: IF YOU HAVE GONE THROUGH HEART SURGERY WITH YOUR

CHILD...please chime in here! Tell us about your experiences! Let Misty

know what to expect and help her with those details that you wish you

had of done or known about.

When is the surgery again Misty? I don't remember???

Kristy

misty cool <mistycool81@... <mailto:mistycool81%40yahoo.com> >

wrote:

Well we got some good news about Abby on friday. Her nurse came and she

is right on track with learing what she is suppose to. She is getting so

big fast and all I can think of is this open heart surgery. It will be

here before we know it. I also wanted to say I love reading what

everyone has to say.

Misty Cool mother of Abby 4months mds and 2 yrs

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March 27, 2007

Hello Misty:

Maitlan, our son, had open heart surgery at 3 months of age. I was so worried

about him being so small and so fragile. He made it through surgery with flying

colors. Then the tough time started seeing your child lying there hooked up to

so many tubes and machines ( I know this is hard to think about but if you are

prepared I feel it is not as shocking). We made sure we brought tapes, his

white noise machine. I had read somewhere the noise helps them heal. We also

sang and read to him all the time. To this day I think this is so true.

Maitlan was taken off most of his machines in two days and came home on the

fifth day after his surgery. Maitlan is now 4 years old and we are told that

his heart is like nothing ever was wrong.

(Mellissa 23, Morghan 20, 17, Maitlan 4 (MDS), McKlaine 22 months

--

-------------- Original message --------------

Misty

It is great to hear that Abby is doing so well! I know that you are worried

about this surgery. I think all parents who go through it are!

EVERYONE: IF YOU HAVE GONE THROUGH HEART SURGERY WITH YOUR CHILD...please chime

in here! Tell us about your experiences! Let Misty know what to expect and help

her with those details that you wish you had of done or known about.

When is the surgery again Misty? I don't remember???

Kristy

misty cool wrote:

Well we got some good news about Abby on friday. Her nurse came and she is right

on track with learing what she is suppose to. She is getting so big fast and all

I can think of is this open heart surgery. It will be here before we know it. I

also wanted to say I love reading what everyone has to say.

Misty Cool mother of Abby 4months mds and 2 yrs

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March 27, 2007

Thank You Misty, for asking for those on this group to share their open

heart surgery stories. I too am very worried about my daughters open heart

surgery coming up. She is to have an ASD repair the end of May. The date is not

set

yet. They wanted to do it this winter but I asked to wait to spring because

I felt she would be in better health. I also wasn't ready for it. She has

upper respiratory issues in the winter and by spring she usually dries up. I am

a

Nurse so knowing what to expect is even scarier. Knowing what can go wrong

is the worse. I wish I didn't. My husband isn't as afraid as I am. The anxiety

about this surgery is killing me. She just seems so healthy. You can't

really tell she needs it looking at her. It is hard to hand over your child to

have their chest opened with all the risk that comes along with it, when they

seem OK without it. I know she needs it and their is no question that it will

be done but that is the hardest part for me. I too would like to know how

others got through it. I can imagine surgery day is very difficult to get

through. Thank you, and 18 months old (MDS)

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March 27, 2007

What type of surgery did have? and 18 months MDS

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March 27, 2007

Misty,

My daughter had open heart surgery when she was 7 months

old. I was very worried and scared and had alot of emotions I can't

even describe. I knew she would be swollen when she would come out

but I never dreamed I wouldn't almost not recognize her. She had

some complications after, so we were in the hospital for a month.

She had an allergic reaction to some medicine, then her heart would

not beat properly. So we had to wait for up to 14 days to see if it

would repair itself, but that didn't happen. On day 13, they took

her in and implanted a pace maker. While they were installing that,

they clipped her lymph nodes, so we were there longer to be able to

stop the leaking and she was put on a low-fat formula to a no-fat

formula, and back to the low-fat formula until it qiut leaking. On

Mothers Day we were able to take her home, but still on the low-fat

formula. It took us 2 days to get home because we live in Great

Falls, Montana and we were in Salt Lake City. She is now 5 and on

her second pace maker and this on will last at least a total of 8

years. She is doing great. and her Cardiologist says he can barely

hear a murmur and that was what he was hoping for. She is now down

to seeing him but only once a year now. Her pace maker checks are

monthly with doing them over the phone and once every 6 months in

the hospital. Good luck with the surgery and I'll be praying for you.

Norma

> Well we got some good news about Abby on friday. Her

nurse came and she is right on track with learing what she is

suppose to. She is getting so big fast and all I can think of is

this open heart surgery. It will be here before we know it. I also

wanted to say I love reading what everyone has to say.

>

> Misty Cool mother of Abby 4months mds and 2 yrs

>

> ---------------------------------

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>

March 27, 2007

is 18 months and 25% MDS She was really low tone at birth and she

wasn't hitting milestones until late. That changed after turning one and she

started doing everything so fast. She started walking at 16 months. has

her share of health problems. She was born with a large ASD (Atrial Septal

Defect) and was oxygen dependent the first couple months of life. She is off

oxygen now. She is due for open heart surgery the end of May. She was failure to

thrive not weighing more than her birth weight still at 2 months old. She

had a NG tube placed to get extra calories in her for 4 months. Due to that she

developed even worse feeding issues and started having sensory problems with

her face and food aversion. She stopped eating totally and had a G-tube

placed @ that time. She still has it, and is starting to taste food and drink a

little now. She has reflux and is on Prevacid. It used to be awful and she

would throw up all the time but it happens very little now! She had frequent

ear

infections and had ear tubes placed last summer. She has had only 3 ear

infections since they were placed. That is a huge improvement! She has extrobia

?

of the eyes. She sees the eye doctor every couple months to keep an eye on

it. It isn't bad enough to need surgery or glasses yet so we are hoping it

improves with time. She has Genu Valgum of her knees. We just saw the

Orthopedist and he is hopeful she will outgrow it by age 6. If she does not,

surgery

will be done. He is worried about her right Hip so she is having a brace made

to wear at night in a couple weeks. She is slightly speech delayed but I am

not concerned yet due to her age. She had an appointment with a speech

therapist to evaluate her but it was a mutual decision to give her a couple

months

and then re-evaluate. I just bought some videos designed to help kids learn to

talk. I hope it starts to help. Well, I think that is all her medical issues.

She does not have any bowel problems or thyroid problems, I think we have

enough to deal with for now. She is such a joy though! mom to

18 months (MDS)

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March 27, 2007