Open Heart Surgery for 5 Year Old

Hi H....

I have little advice to offer...just a lot of hugs. MY daughter also has a CHD. She is 2.5 yrs.a nd growing big! We already have 2 open-heart surgeries under our belt and will have at least a coupld more in the future. I know a bit of what you are facing...and I wish you peace and strength to get you through the days ahead.

If the Surgery at Children's in Milwaukee? There heart team is fantastic and can probably answer a lot of questions for you.

Another resource would be www.littlehearts.org Great site...full of lots of great stories and tons of hope!! I am betting that there are tons of people there who would be happy to answer your questins and give you great advice!

Best of luck! I will keep you family in the thoughts :)
Jen

Hi H..
Understandably as a parent your stress is great-- worried.
Please do know that open heart surgery recovery isn't as tough as you are fearing it.
I know this as I do it for a living- running the heart lung machine .
And I also have several acquaintances who's family members (including my own - an adult) have had the surgery-- many of them children.
Children are so so much more resilient than adults in recovery.-- as they are with most things.
Yes-- the first 2 weeks will be hard-- the first 4 I'm sure they've said will be in the ICU.
That will be most hard on YOU as parents.
Your daughter will likely be home within the first 4-6 days-- likely the earlier end.
What is hardest is they tend to feel better than they ARE-- so you have to keep them quieter than they want to be.
Many tend to have the surgery during summer breaks so as to avoid school-- your daughter most likely being only 5 can be home without that.
I bet within 2 weeks-- you will find that she is ramping up and raring to go............
So-- have positive thoughts and take some deep breaths.
One of my best friends was a mental wreck for her daughters first heart surgery-- the second one was easier as it's the unknown that scares you. And most Mom's would rather have surgery on themselves than know their child will be in pain. That day will no doubt be hellish for you as you wait and its a rather quick surgery so yea in that.
Trust your team, take something to calm YOU so that doesn't make her scared too- you're in a great area for peds surgery.
Hugs from another mom who does in different ways understand your concerns....

About me: 49 yo perfusionist, wellness coach also doing a nationwide online biggest loser for $$, wife, mom to 8 yo twin girls

B. J

I'm in Austin, TX and my son had an Atrial Septal Defect repaired 4 years ago when he was 4. It's all a blur now- like we lost a week of our lives. We spent several days sleeping in the hospital room. i didn't even go home the whole time, just to the Ronald McDonald house for 15 minutes at a time to get a meal. The hospital had a lady that met with us during the first part of the surgery and went over a detailed desription of what they were doing and what all of the tubes and monitors were for so we wouldn't be as shocked when we saw him. The worst part was sitting with him in ICU. I remember him complaining over and over of being thirsty but not being able to let him drink because he couldn't keep anything down yet. Luckily, he was so drugged that he doesn't remember much of it. After he moved to a room, the hospital we were at let us bring in a potty chair from home(didn't use much but made him comfortable to have), and video tapes. He slept a lot and couldn't move because of all the tubes. By the end of our time at the hospital, we were able to go around the hospital with a wagon, and he went to a room with other kids to play with toys, read books, and paint pictures. I think at the time I was very surprised, even though they had told me ahead of time, just how fast he recovered.
From what I remember after going home, he was almost back to normal. I think the restrictions were no bath for a certain amount of time while things were healing, strips of tape were supposed to peel off gradually, take aspirin for 6 weeks, no monkey bars and no fast food playgrounds for a couple months. At the time, he was going to school for just 30 minutes a week to work individually with a teacher, and I don't think he had to stay out for very long. He didn't want to sit on my lap to listen to a story any more- he was too busy moving. Within a few months of the surgery, he gained 4 pounds. I remember being very protective of him for a while after that though. Several months later at Chucky Cheese a boy kicked him in the chest and I over reacted. Things are better now. He's still not *interested* in sports, but is more active. We only have to go back to the cardiologist every 2 years, and he doesn't have to take antibiotics before the dentist anymore.
I joined 2 support groups, http://www.itsmyheart.org/ and http://www.savinglittlehearts.com/

Hello H.
My heart goes out to you. Knowing your child needs major surgery is very stressful. My daughter has had 2 major heart surgeries and is doing very well. She was born with 2 VSDs, and ASD, and other heart defects. She will require more surgery in the future.
Recovery from this surgery is surprizingly fast. Within 2 weeks you will be trying to stop her from running around. WIth children the chest bone knits back together faster than adults. Avoid the tempation to keep her in bed all day. Sitting up and walking around keeps the lungs clear and also takes the pressure off the chest so the bone knits back in alignment.
Children bounce back quickly but they also sense your emotions. Try to stay calm and positive. The perfusion (heart-lung bypass) used during surgery can cause mood swings after surgery and it may take a few weeks for her to settle down to her usual self. So try to keep things familar to her and the home routine as much as routine as possible.
She may loose her appetite so you may need to tempt her with her favorite foods to get her eating again. Yoghurt and mashed bananas were my daughter's favorites.
As she grows the scar will fade and be lower down on her chest but probably still slightly visible with normal clothing. My daughter likes to wear necklaces - not to hide the scar but it deflects attention away from it.
Best wishes with the surgery and that you will soon have a well daughter with plenty of energy!

Buy a child's "doctor kit" from a toy store, and schedule a visit to the hospital now to see exactly what their procedure is. Ask them for one of the disposable face masks they will use for the anesthesia, and a doctor's face mask and head covering. Bring it all home, and start playing hospital with your daughter. Go through the steps, including a cheerful "goodbye," before going to surgery, etc. Use her dolls and stuffed animals to get her used to the kinds of things that you expect she'll encounter at the hospital. Allow her to play "doctor" herself.

Also, I'd strongly recommend getting a relaxation/meditation audio recording to prepare for the surgery. There are some excellent ones available at www.healthjourneys.com Put "children" in the search bar and a list of options will come up. You might want to get "successful surgery" for yourself, and start using that to help you manage your own stress, just modifying the imagery to suit your needs. Your calmness and confidence will be very soothing for your daughter.

Do the relaxation exercises with your daughter, and also incorporate them into the play, having the toy 'patients' do them as well.

Best wishes for a smooth, quick recovery for your daughter!

I don't have any advice because I have not been through this but it is a possibility that my son will have to have some heart and liver repairs when he is a little older so I am always on the look out for this type of info. Good luck and stay strong for your little one. I can't imagine how stressed out I would be with a surgery coming up. Let us know how the recovery goes, and I agree with the person who said ask friends to help cook or bring dinner, I'm sure they would love to help out in some way, or watch your daughter so you can go on a walk or something once in a while. My thoughts are with you,

.

So sorry your family is facing this stressful situation. You are very wise to be thinking ahead and seeking support.

I think sleeping in the same room as your daughter will be so comforting for her. She will know you are there whenever she wakes up.

No specific advise, but I would just like to offer encouragment. A preschool classmate of my son's had this procedure done almost 10 years ago. She had no complications and made a full recovery. Best wishes.