Upcoming Surgery

[ERIKASMOM]

My daughter Erika is scheduled to have her pulmonary valve placed on Dec. 6I have been doing alot of reading on these boards and on the story page as well. They have really helped me feel more positive about what we are about to go thru. Even tho this is our 2nd time around with surgery. The 1st time she was 3 months old and that was a scary experience but of course she doesn't remember a thing!! This time we have different issues since she is a teen-ager! I think she is keeping busy with her activities and doesn't dwell to much on the surgery she worries more about what she will miss when she is recovering. I, however am on pins and needles just waiting for the day to arrive!

 

[Karlynn]

Welcome Erika's Mom! I'm glad you have found this site helpful. We are a supportive community, with a lot of very knowledgable members. I hope you'll feel free to ask any questions that you have.

 

[BDMc]

Thoughts and Prayers

Thoughts and Prayers

Dear Erika's Mom, I'm glad you found us too. When you reach out for your mouse just think you are reaching out for our hands. We are here for each other! I will be thinking of you both, and wishing you the best. Brian

 

[geebee]

Welcome. You will find a lot of answers and support here. Please let us know how we can help.

 

[hensylee]

wE ARE GLAD TO have you among the membership of VR. The more members who come in, the wider the variety of patients - from wee babies to older folks.

I am so sorry your teen has to go through this. We are here 24/7 to answer any questions you may have. Maybe your dear daughter will stop in from time to time if she has any questions to add to yours.

Read all you can to educate yourself. This is the best site you can ever find.

Welcome - and our prayers go with you all as your child ascends the mountain to recuperation on the other side.

 

[catwoman]

Dear Erika's Mom, I'm glad you found us too. When you reach out for your mouse just think you are reaching out for our hands. We are here for each other! I will be thinking of you both, and wishing you the best. Brian

I love the way Brian expressed what we do here.

I will be praying for your daughter and your family. She's a very active young woman, so she will be sitting on the sidelines for a little while, but she'll bounce back fast.

 

[Marguerite53]

Welcome!

Welcome!

Welcome to this wonderful community. Please feel free to ask anything and everything of these kind and widely experienced people. Some of us (like me) are in an extended Waiting Room knowing we'll need a replacement, but no idea when yet, so we don't have the experience to share. But we're great on support!!

I have an 18 year old daughter who is in her first year at college. High school can be very busy!! But the nice thing about your daughter's Holiday vacation timing is that she won't miss as much and she'll probably bounce back so fast that she'll have a great new year.

Good luck and keep us posted.

Marguerite

 

[ERIKASMOM]

thank you

thank you

Thank you so much for you encouragement and prayers. I guess the one thing I have been struggling with is what I should be talking to Erika about to prepare her for surgery and recovery. I don't bring it up alot, becuz I don't want to constantly remind her, but I feel like I should be doing more or talking to her about what to expect, but then again I don't want to scare her. She had a hard time getting the flu shot! So any advice from those of you who have been there would be appreciated. I realize everyone is different and handles things differently but just getting some input on how to help her would be great.
Thanks again.

 

[Kate]

Hi Erikasmom!
I think you are starting off on the right foot by understanding that everyone handles this in their own way. Depending upon how old Erika is, my guess is she has some ideas about what would make her feel better (or will be able to come up with some if encouraged to). I think this is a great chance for you to help her learn how - women usually know how to care for others but not always how to care for themselves!

One thing that I found very helpful in getting ready for surgery was I really tried to think of things that would be special and comforting during my recovery. For me, this turned out to be pajamas, novels and some special foods that I don't normally eat. Before surgery, I bought myself all these things - more than I would normally allow myself to spend but certainly not so much that it put me into debt. Maybe $200 total? Then I put them away for when I came home from the hospital. This allowed me to feel like I was actively doing something to prepare prior to surgery, gave me something to look forward to when I was in the hospital and made me feel pampered when I came home.

On a more spiritual note, I also found mind-body exercises very helpful - deep breathing, guided imagery, muscle relaxation - but this isn't for everyone.

 

[KathyH]

I will keep your daughter and you in my thoughts and prayers. If my daughter were to have surgery, I would just ask if she has any questions about the surgery. That way it will open it up, if she wants to talk about it. If she doesn't, then just let it go. As some one else suggested, go on a little shopping trip with your daughter before surgery. She may want some new CD's to bring with her to the hospital. I found it very comforting to listen to my favorite music. Best Wishes for a good trip up the mountain.
Kathy H

 

[gijanet]

Hi, _________ (fill in blank), AKA Erikas mom

Hi, _________ (fill in blank), AKA Erikas mom

Welcome to the group. Sorry you HAVE to be here, but glad you found us, if you know what I mean. I could give you a just recently turned five year old's opinion of heart surgery, but I don't think Erika would truly appreciate Katie's perspective. ("Don't cry, Granmommie. Me just goin' to have heart surgry[sic]. Me be back soon." This as we were walking out the door to go for heart surgery numero tres when she was three.) But Lyn should come along soon. Her son Justin is 17. He just recently had his valve replaced, too, so Erika might be interested in "talking" to him. Justin's carepage info is www.caringbridge.org/nj/justinw

Anyway, from one parent to another, I'm sending my hugs. Having been through this four times now, well five, if you count the two for one sale this past July, it never gets any easier. I was a complete basketcase the two months before. God and this group got me through. We're here if you need us. Many hugs. Janet P.S. What type of valve is Erika getting?

 

[Curtsmum]

Hi just wanted to wish you and Erika the very best of luck, i will be thinking of you, hope that Erika has a very speedy recovery and you can still have a great christmas , sending prayers and hugs your way for december.Paula x

 

[Georgia]

Hi - welcome. A couple of things.

I think the music is a great idea - perhaps she'd want to participate in her planning by downloading her favorites to an MP3 or iPod? If she doesn't have one, perhaps now would be a good time for an early Xmas present?

Another thing that's been discussed here before: women who are menstruating seem to have problems with this immediately after surgery (I was past all that so I didn't have a problem). This could be awfully embarrassing to a teenaged girl, so you might want to broach the subject so she won't be blindsided.

I do think that shopping is about the best pre-surgery therapy available; she needs to get her shopping and wrapping done and she'll be quite cold after surgery so she needs to have warm, cuddly jammies and robes and throws (you might want to invest in a couple of silk undershirts to protect the incision; they're smooth and lightweight and very warm).

If you don't have a recliner that she's comfortable in, please consider purchasing one for her; sleeping lying down is often impossible; and nothing beats a recliner for resting during the day.

A small footstool for the shower; the hot water can make you quite light-headed and she will want to shower long and often when she gets home.

I'm so sympathetic to all of you mothers of kids who need this surgery; it would be so hard not to panic and to hover and drive you and the kids crazy; it's a fine art to be the kind of supportive parent while feeling like you're screaming inside.

Best of luck.

 

[Emma]

My experiences with heart surgery will be different I'm afraid as my daughter was under 2 when she had all 3 of her open hearts but does have a mechanical valve and I fully appreciate how you must be feeling as her mum.
So I just wanted to say hi and send you huge hugs!!!
Love Emma
xxx

 

[ERIKASMOM]

Update

Update

Hi Everyone,
Thank you for your wonderful responses. Erika and I had a great talk tonight, she had alot of questions and I think one of her big concerns is seeing her incision as well as other things that might make her feel queasy. Of course she has lots of concern about pain, but I hope I was able to reassure her and told her what I read on this site concerning pain.
We also have already gone on our shopping trip and have bought comfy clothes, slippers, etc. cuz ya know she is a 15 year old girl and any excuse to shop will do!! In fact I think another excursion is planned this weekend and that is just fine with me
Well, Monday is pre-op and Tuesday is the day and as Erika said, time is flying by!
Thanks again, Judie

 

[Lynlw]

My son is 17

My son is 17

and Just had his pulm valve replaced well he had his conduit replaced and just got a pulm valve for the first time in May.It was his 4th OHS but he still remebers the one he had at 10
Sorry I didn't see this before, Janet gave you Justin's page (thanks Janet), Justin is pretty good at talking ot any of the teens that have questions, if you email me at [email protected] I can pass on his aol sn and email.IF she emails him, please tell her to cc me also since he doesn't always check his emails right away and if I know she wrote I'll make him check, oh she doesn't have to cc me, just email me,and let me know that way she won't worry about me reading anything. )
we just had another friend who is 17 get a pum valve a few months after Justin and Just gave him some helpful suggestions, if you want I can look for them. If you have a recliner it would be great for her to sleep in the first couple days when she gets home since it seem to be easier, if you don't have one you might want to borrow one they really help. also if you look at Justin's care page, it is a free thing for families going thru medical issues, Erika, might like to set one up, they are really easy (believe me easier for teens then me lol) and it helps you to get out up dates from the hospital and not having ot worry about calling or being on the phone all the time, also there is a guestbook and Justin really enjoyed reading all the messages from his friends when he was in the hospital. oh check out his photo page I'm pretty sure there is still a picture of his incision 2 days post op.
tell her she really shouldn't have much pain make sure they keep on top of her pain meds and tell her to be honest when they ask how bad it hurts, Justin tried to act brave and said it wasn't too bad, so he really paid for it, after that he let them know right away if it was starting to hurt. oh take a small pillow (about the size of a throw pillow for her to hug when she has to cough, they make you cough alot to clear your lungs and it doesn't hurt as bad if you hug a pillow, if you are near a tower records, Justin had an uglydoll (www.uglydolls.com ) for his last heart surgery (even tho we have been making fleece hug pillows for heart kids for 4 years now) and it was just the right size and worked so good, we actually bought a couple for other teens having surgery,
well i'll stop now. please email us w/ any questions, I'll keep you both in my prayers. oh talking, Justin didn't really like to talk about it much before surgery (which was postponed 3 times, so it was a long tough time) but I just made sure any time he wanted to talk I was there, I hate to say this, but he really was afraid of dieing, he never told me, but as soon as he woke up post op he asked if it was over and was he alive, i felt so bad.oh I don't know if you have a laptop, if you do I would take it. Justin loved to talk online w/ his friends (some of the teachers even let the kids IM him during class) if not some of the hospitals lend them and some parts of the country have organizations that will lend laptops to kids in the hospital
lyn www.caringbridge.org/nj/justinw

ps teen boys love to shop too lol

 

[Cris N]

Judie,

I'm so happy to hear that you & Erika had a good talk about her upcoming surgery and a good shopping trip to deal with some of it! You and your daughter will be in my thoughts & prayers.

Cris

 

[gadgetman]

Judie,

Our thoughts and prayers will be with you and Erika while you both go through this.

Good luck and,

May God Bless,

Danny

 

[nia]

Hello Judie,

I had my mitral valve replaced when I was 21, had to take a semester off of college to recover. I usually don't care too much about how I look, but when I first saw my scar in ICU, I bawled (I'm a girl). Some of my family members insisted that I get some kind of plastic surgery later to get rid of it. That wasn't exactly what I wanted to hear so early in the recovery process (she started that while I was crying) since it just made me feel like I had something that was not acceptable for a girl to have on her body. One good thing about the whole thing though (not the scar) was that there was an anesthesiologist who was unbelievably hot. Too bad he was married.

It's been almost 2 years since my surgery, and the scar is keloid (especially the top inch or two). I went to my college graduation ball wearing a dress that showed that part, and no one said anything (except for my mother who saw the photos). I took swimming for PE and no one said anything.

It will probably be shocking for Erika to see the fresh scar; it might take her some time to sort of get used to it. If you and/or she wants to talk to me, please feel free to email me at: [email protected]

Take care