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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Open Heart Surgery Recovery process

Greetings Friends,

So we scheduled my daughter's open heart surgery for this Spring to repair her ASD. The surgeon said it would be a total of about three hours. First hour for anesthesia, second actual repair and third hour recovery and trying to get her off breathing tube etc...

I am so nervous about what awaits us, but surgeon said children usually do very well and her heart should return to normal in time and she should make a full recovery!!!.

How long does it take for breathing tube to be removed and for her to begin breathing on her own.. Do you usually wake up after anesthesia with no memory loss? They did not give us timeline for when she can return to school. Any ideas? I am so scared about how she is going to deal with everything but am grateful that it can be fixed and she should have a normal life after the repair. How am I going to keep it together during the surgery? It's just a parent's worst nightmare!!!

We are meeting with child specialist soon to help us through the process. Any input would be greatly appreciated!

Warmest Regards!!! XOXO

I just spoke with child life specialist and she suggested that we briefly tell her a few days before pre testing day and bsed on her reaction modify the details. They are giving us a book and a doll with tape across her chest and told us that we could stay with her during the entire hospital stay. They did not give us actual amount of time that she stays home from school bc it varies per child. I am feeling better about the process. :)

My daughter had open heart at age 15. she was off the breathing tube by the time we saw her in ICU, but surgeon said if there is pulmonary hypertension they would keep it on her for overnight.

You will feel like you are in a trance the day of surgery. What kept me going was prayer and texting relatives throughout surgery.

Stay strong. It's a blessing that you know she needs surgery. So many children pass away not knowing they have congenital heart defects. You are not alone, lots of parents, lots of kids, you will get through this...

My daughter was a freshmen in high school, she missed three weeks of school. In two months she was back on the basketball court even though her ribs and shoulders still hurt. then in the spring of the following year she began track and starting throwing the shotput and discus. she is strong, stubborn and no stopping her now.

I am a child life specialist and I also had an ASD repair this past October. It’s way different for adults that it is for kids because kids tend to recover much more quickly. If I were you I would contact the nurse practitioner who works with the surgeon. They have such experience with this and will likely be able to answer your questions prior to admission. However, I think most kids spend about 5 days in the hospital and return to school at about the three week point-limited activities at first.

well I was 48 at the time, so I'm not sure how this relates. But in my case, the breathing tube was removed just a few hours after the surgery. I was well-medicated, so it caused no discomfort at all. In fact, I slept again right after that, and was sleeping peacefully for the next 12 hours or so, before they got me up to get x-rays and do some walking.



Chromedome said:

well I was 48 at the time, so I'm not sure how this relates. But in my case, the breathing tube was removed just a few hours after the surgery. I was well-medicated, so it caused no discomfort at all. In fact, I slept again right after that, and was sleeping peacefully for the next 12 hours or so, before they got me up to get x-rays and do some walking.

Thank you Chromedome, It does help. I guess I'm trying to prepare myself as to what she may look like when I see her and reassure myself that she will be comfortable. thank you



GFSCCLS said:

I am a child life specialist and I also had an ASD repair this past October. It's way different for adults that it is for kids because kids tend to recover much more quickly. If I were you I would contact the nurse practitioner who works with the surgeon. They have such experience with this and will likely be able to answer your questions prior to admission. However, I think most kids spend about 5 days in the hospital and return to school at about the three week point-limited activities at first.
That's a great idea! I'm just trying to arrange my work schedule and her school schedule. Thank you!



Sophie said:

My daughter had open heart at age 15. she was off the breathing tube by the time we saw her in ICU, but surgeon said if there is pulmonary hypertension they would keep it on her for overnight.

You will feel like you are in a trance the day of surgery. What kept me going was prayer and texting relatives throughout surgery.

Stay strong. It's a blessing that you know she needs surgery. So many children pass away not knowing they have congenital heart defects. You are not alone, lots of parents, lots of kids, you will get through this...

My daughter was a freshmen in high school, she missed three weeks of school. In two months she was back on the basketball court even though her ribs and shoulders still hurt. then in the spring of the following year she began track and starting throwing the shotput and discus. she is strong, stubborn and no stopping her now.

That's amazing!!!! Thank you for your advice. XOXO

My kiddo just had her large and patched via OH on the 29th... here's is what our experience was like.

1st my child is 4, so I kept her info very simplified. She knew when she had the echo they were "looking inside" her. So since she loved doctors I told her that when they were looking they found that her heart was sick and we were going to take a trip to St Louis where my nephew goes when his heart is sick. At this point we discussed there would be lots of really nice doctors and nurses. Since she is a very out going child she was excited for a trip (without her sister) and to get to meet LOTS of new people. She started calling it a party. This is also because my nephew told her that there were lots of toys and fun things to do there once she started feeling better.

2nd arrived the day before for pre-op labs and tests. Again, being a children's hospital, she was enjoying all of the attention. I continued to remind her that we were there to fix her sick heart, with her humor she would just laugh and say "yes mom, I know but it is more fun to call it a party" The surgeon explained the procedure in front of her, but didn't discuss the before and after. I was waiting until my pre-surgery consult with the anesthesia nurse to get more details and then prepare her. this was our last appointment of the day. they said that they would give her sleepy juice so she wouldn't even care being separated from me. Then the put her under with a mask. So no needles to warn her about. They told us that the her procedure repair would only take roughly 20 minutes. The rest of the 3 to 4 hours was sedation put opening, "stuff to prepare" for repair, then the same in reverse. They called us every step of the way to let us know what they were doing and what was next and roughly when the next call should be. They said the only thing SHE would have connect to her if all went well would be an IV for fluids and meds, IV for measuring her blood pressure, chest tube for drainage, and simple nasal oxygen tube and a catheter. Since she is young they keep them sedated so they don't pull stuff out.

3rd- recovery will all depend on child. Our doc said 3 to 5 days stay. She was discharged in 24 hours, which I was told is unheard of. Surgery was at 7:30 am, at about 2 am they started weaning her off the sedation by 6 she was awake and walking to the bathroom (she didn't understand the catheter so they humored her), eating and by 10 am they removed her chest tube and was walking the ICU halls. PLEASE keep in mind this recovery time line is not the norm but the staff wished it was. They say 2 weeks recovery away from crowds, and 6 weeks total time for the ribs to heal.

I hope this helps.



Sophiasmom said:

My kiddo just had her large and patched via OH on the 29th... here's is what our experience was like.

1st my child is 4, so I kept her info very simplified. She knew when she had the echo they were "looking inside" her. So since she loved doctors I told her that when they were looking they found that her heart was sick and we were going to take a trip to St Louis where my nephew goes when his heart is sick. At this point we discussed there would be lots of really nice doctors and nurses. Since she is a very out going child she was excited for a trip (without her sister) and to get to meet LOTS of new people. She started calling it a party. This is also because my nephew told her that there were lots of toys and fun things to do there once she started feeling better.

2nd arrived the day before for pre-op labs and tests. Again, being a children's hospital, she was enjoying all of the attention. I continued to remind her that we were there to fix her sick heart, with her humor she would just laugh and say "yes mom, I know but it is more fun to call it a party" The surgeon explained the procedure in front of her, but didn't discuss the before and after. I was waiting until my pre-surgery consult with the anesthesia nurse to get more details and then prepare her. this was our last appointment of the day. they said that they would give her sleepy juice so she wouldn't even care being separated from me. Then the put her under with a mask. So no needles to warn her about. They told us that the her procedure repair would only take roughly 20 minutes. The rest of the 3 to 4 hours was sedation put opening, "stuff to prepare" for repair, then the same in reverse. They called us every step of the way to let us know what they were doing and what was next and roughly when the next call should be. They said the only thing SHE would have connect to her if all went well would be an IV for fluids and meds, IV for measuring her blood pressure, chest tube for drainage, and simple nasal oxygen tube and a catheter. Since she is young they keep them sedated so they don't pull stuff out.

3rd- recovery will all depend on child. Our doc said 3 to 5 days stay. She was discharged in 24 hours, which I was told is unheard of. Surgery was at 7:30 am, at about 2 am they started weaning her off the sedation by 6 she was awake and walking to the bathroom (she didn't understand the catheter so they humored her), eating and by 10 am they removed her chest tube and was walking the ICU halls. PLEASE keep in mind this recovery time line is not the norm but the staff wished it was. They say 2 weeks recovery away from crowds, and 6 weeks total time for the ribs to heal.

I hope this helps.

You are an angel and yes this totally helps. (My daughter is named Sofia too!!!) talking to others that are going through same thing is the only thing that makes me feel better and I really appreciate your time and experience. Your Sophia sounds amazing!!! We also have a three year old boy who we are leaving behind. I am so worried... worried about actual procedure and aftermath, but I know it will all go well. Thank you!!!!

XOXO

I am still in the coping with the aftermath stages. How old is your Sofia? I will send you a private message too.

One thing that i was concerned about that I didn't realize i fixed until i changed her dressing tonight was fear of pain.

Yesterday she had a meltdown about taking a bath. She wouldn't even let me clean off the sticky from the bandages and EKG pads. She didn't trust me. I didn't realize until I was changing her bandage the she thought her chest tube hole was still open and bleeding. I took a picture so she could really see what was there. I explained it wasn't open anymore. Then I realized she thought water would get in her tummy. I showed her that it is pink and looks just like her skin when a scab falls off too soon. That seemed to have done the trick, because today dressing change went easier than any time before. A friend was here and she explained to her what we were doing, how and why. Made momma very happy. Best advice I can give you is sleep when they sleep and make sure you take care of yourself. The stress and everything you don't want to get sick too. Xoxo



Sophiasmom said:

I am still in the coping with the aftermath stages. How old is your Sofia? I will send you a private message too.

One thing that i was concerned about that I didn't realize i fixed until i changed her dressing tonight was fear of pain.

Yesterday she had a meltdown about taking a bath. She wouldn't even let me clean off the sticky from the bandages and EKG pads. She didn't trust me. I didn't realize until I was changing her bandage the she thought her chest tube hole was still open and bleeding. I took a picture so she could really see what was there. I explained it wasn't open anymore. Then I realized she thought water would get in her tummy. I showed her that it is pink and looks just like her skin when a scab falls off too soon. That seemed to have done the trick, because today dressing change went easier than any time before. A friend was here and she explained to her what we were doing, how and why. Made momma very happy. Best advice I can give you is sleep when they sleep and make sure you take care of yourself. The stress and everything you don't want to get sick too. Xoxo

Dear Sophiamom,

I think we are going to be facing the same thing. I spoke to the child life specialist at CHOP and she said each kid is different regarding surgery. I think my Sofia is going to be angry after surgery because she's already terrified of having something wrong with her. We are going for pre-op and meeting specialist and she said to tell her little and we will see how far we can go during pre op visit based on Sofia's reactions. I am going to reach out to child psychologist for pre and post surgery so Sofia has an outlet. I told off two weeks of work, hopefully that will be enough and I have relative staying with us for three weeks. Our Sofia turned 6 in October andwe found out about her ASD at annual checkup this November. She had no symptoms but its large (16MM)

What did they use to patch Sophia's ASD? I think shes doing really well. She's only a few days out! She sounds super smart but I guess being a doctor may not be in your Sophia's cards right now. Hang in there yu are doing a super job and an inspiration to other mommies, so thank you. Warmest regards!!!! XOXO