[mommamarci]

Anyone have any experience with open heart surgery to close a hole in a toddler? We found out today this is a possibility in our future. We don't know yet that it is happening, but I am, of course, beginning to freak out already... We should know more in the next few weeks.

Thanks!

[SuzBerg]

Marci - I'm sorry I missed your post. There are a few of us "heart moms" on this board so hopefully others will see your post and respond as well.

Our daughter is 6 and has had 5 open-heart surgeries (she has MAJOR heart defects, as well as a pacemaker). I do not have experience with the surgery you mentioned but I'm here if you have any other questions or just need someone to listen to you vent.

I know all about "freaking out" but I also know that modern medicine is amazing and miracles do happen. Please pm me or post again. HeartHugs - Suz

[mommamarci]

I think I am most worried about the recovery period. Cameron is a very active kid. he climbs constantly. He falls a lot and then laughs and gets up to do it again... So, I am worried about how he will survive the recovery period.

With your daughter, how long was she in the hospital for her surgeries? How did she handle recovery?

[devildogwife]

Originally Posted by mommamarci

I think I am most worried about the recovery period. Cameron is a very active kid. he climbs constantly. He falls a lot and then laughs and gets up to do it again... So, I am worried about how he will survive the recovery period.

With your daughter, how long was she in the hospital for her surgeries? How did she handle recovery?

I know your questions were directed at Suz, but I should be able to answer some of them. Cameron was just hospitalized for the 6th time and is always on a "heart" floor when he goes in. There was a 3 year old boy who I saw walking around with his parents and SMILING who had just had his 3rd and final stage for HLHS. Cameron has had 4 major, major open heart surgeries and for the last one, he wasn't kept on pain meds for more than 3 days. Kids really heal so quickly and his nurse practicioners have told me they really don't feel breast bone pain for as long as we think they do. However, between surgeries 3 and 4, Cameron was so tolerant to sedation that when he went back on the vent (like the 7th time), he had to be paralyzed with a med called Vec, or he could have really damaged his vocal cords. But with your son not having narcotic issues, it shouldn't be a problem.

For Cameron's first 2 open heart surgeries, he was in the hospital for 1 month. The second 2, almost 4 months. The hospital stay depends on so many things; how sick are they going in (my Cameron was VERY sick), how long are they on the ventilator is key! Really, it it's not a complex CHD (like HLHS), you probably won't stay there months on end like we do.

There was a thread from a few months ago started by Tweety, that Suz and I contributed too. I'll see if I can link it. That will give you lots of ideas for the hospitalization.

Also-feel free to pm me too about Cameron's care page.

ETA-here's the thread:

Helpful Hints for Hospitalizations

[SuzBerg]

Marci - My daughter's first surgeries (at birth, 2 months and 11 months) were before she came to us. And at that time she didn't crawl or walk (she was/is pretty delayed physically), so not the same as your running jumping toddler.

I CAN tell you about the surgeries when she was with us though . At 3.5 she had the Fontan (supposed to be 3rd and final surgery for HLHS). She did VERY well with this one. Surgery was on Monday, she was extabated before she went to ICU (like ddw said how long they are on the vent is key). She left ICU on Wednesday and we went home from the hospital on Saturday. She did lay around at home a lot and watched a LOT of Nemo! But about 6 weeks later school started and she was ready to attend pre-school on her regular schedule. Plus she never really had run or jumped or played physically alot so for her lying around a lot was more normal.

The surgery she had last fall was a doozey for us (but nothing like DDW and Cameron). She had a Fontan Revision (so obviously the Fontan was not her final surgery and she probly still needs more eventually), they also had to repair a leaky valve that they weren't expecting. She had surgery on Monday but was on the vent for 3 days and in ICU for 5 more days and we were in the hospital 2.5 weeks (plus another 4 days at a Ronald McDonald House close to the hospital). So it was more of a 3 week visit than 5 day visit that time. Her recovery on that one took a LONG time. Her surgery was October 15th and at Thanksgiving she was still recovering. By Christmas things were much better and she was able to return to kindergarten (only 1/2 days instead of full days) after the holidays in January.

BUT my daughters heart condition is very complex and she didn't attend school full days before the surgery (but the last month of school she was able to!). I think your sons recovery time would be much easier and faster because he's a healthier kid to start with. My daughter has pretty much always been "sick" so it's much different.

Please keep posting and we will help you any way we can!

Hugs - Suz

[SuzBerg]

Marci - Here's another thread we had about Heart Surgery/Hospitalization you might find helpful as well. Surgical Consult

[SuzBerg]

Marci - I wanted to post - because tonight as I was getting a book to read to Em for her bedtime story I came across her "heart books". I think Em is a lot older than your son (she was 6 when she had her last surgery but developmentally more like 4ish) I don't know how old your son is or how much preparation you are planning to do with him if he needs heart surgery, but I have some fantastic books that helped Em so I thought I would share the titles and if you're interested you can see about getting them.

* "Matty's Heart - A Child's and Parents' Guide to Open Heart Surgery." I love this one it has lot's of pictures and explanations - I don't read all the words to her (some of it is a bit deep) but I talk to her about it.

* "Matty's Heart Cath - Story and Coloring Book" (I'm not sure if your son would need a cath if he has surgery but this is a good one too)

(I purchased both of those books - as well as several others- from KIDSWITHHEART.ORG)

* "Do I have to Go to the Hospital? A first Look at going to the Hospital" by Pat Thomas

And then I think we also read a Berenstein Bears go to the Doctor and Curious George goes to the hospital and another one I can't think of when she was 3 and had her surgery.

Some of the heart books, even though they are children's books, really helped ME. It makes it very easy to understand in non-medical language. I don't speak "doctor" very well. I also recommend "It's My Heart" from the Chidren's Heart foundation. It's a resource guide for parents of kids who have congenital or aquired heart disease.

Hope everything is going well for you and your son!

[mommamarci]

Thanks guys!

My Cameron just turned 2. We still don't know anything. We probably won't know for another week or week and a half. I will keep you posted as we hear more. If we find out the surgery is definitely a go, I am sure I will have more questions.

[kelceesmom]

Marci,
My nephew has had 3 open heart surgeries. This last one at the age of 17. He has done great thru them all. Young children are so much more resiliant than adults. Everyone recovers differently but hopefully Cameron would follow suit and do great in recovery if the surgery was needed.

[devildogwife]

that your Cameron is having his first cath in a couple weeks. If you have any questions or just need support, let me know. My Cameron has had 3 (one emergency) caths. His 4th open heart surgery was actually done in a hybrid cath lab and there are only 2 in the country.