1 Year Old Having Heart Surgery

[88mph]

My youngest is has coarctation of the aorta and will be having his third surgery soon. We're waiting for the phone call in the next few weeks.

His first was when he was a few days old and the second was a balloon stent when he was 6 months so unobtrusive.

This time he's almost 18 months and will have full open heart surgery for the first time. Has anyone been through this and can you give any advice on what to expect, especially afterwards during recovery, and any tips for a hospital stay?

I'm worried about the recovery, and how he'll cope if he has to stay in ICU without me (there are no parent beds there) as he still wakes for feed in the night.

Thanks

I've not been in this situation but my DS had surgery when he was two days old so I know how hard it is.

I hope someone will be along with some answers soon

Its likely while he's in icu he'll be either completely or patrially sedated so he's not sore and able to rest and prob wont be taking oral feeds. As he gets back to normal feeding and waking he'll likely be moved to a ward. In icu its 1 to 1 nursing so a nurse will be with him all the time so even if youre not there he wont be alone amd they'll be really experianced in looking after kids.

I dont know much about the specifics about the operation but if you can get him some front fastening pyjamas/baby grows that would be best for him to wear on the ward so they can check his wound etc easily. If you dont stay close to the hospital, ask if they have any accomodation for you while he's in icu. Make sure as well as packing nice things for him you have plenty of books and magazines for you. Maybe download some music and films onto your phone so youre not relying on hospital internet which can be terrible! And dont forget headphones! Bring comfy clothes you can layer up as hospitals are always either too hot or too cold!

Thank you both. That's a good point about the clothes, I'd forgotten that! I hadn't even considered getting a bag together for him. I'll make sure I keep my kindle charged and get some music on my phone, their WiFi is shocking.

Luckily the hospital is local to me so I don't need to find accomodation, which also means if I forget anything it's easy to nip back and get it.

Hopefully once he's not sedated he'll be moved to the ward where I can stay with him. I know of course he'll be well looked after, the staff there are amazing, but it's horrible thinking of him looking for me and not seeing any familiar face!

You should get some rules for when you get home from the hospital, mainly about activities and not picking up underneath the arms for a month or 2 due to the sternum needing to close up again.

My son had OHS at 6 weeks, so a very different age. He was mostly out of it whilst on the ICU and we didn't stay the night. Are there any rooms nearby the ICU you could stay in? Also, he'll probably have a nose line for food as you won't be able to feed him on the ICU due to all the hook ups to machines and things. So, make sure you have a good pump if you're breastfeeding still.

They manage the painkillers really well.

My son was home a week after his operation, they bounce back so quickly.

Good luck, it's a tough time.

Thanks, foxy. Luckily we live a few minutes from the hospital, so we won't have to worry about that. Not picking him up will be so hard! He's a heavy 18 month old now, but not walking yet so still needs carting around.

I'll add my breast pump to the list, I haven't used it for so long I need to check it's working ok!

We had a call on Monday wanting us to come in and the op was meant to happen on Tuesday, but he has conjunctivitis and can't have the op until he's clear of the eye drops for 10 days. So frustrating!

It does give me more time to get a bag together and be ready I suppose but we've been waiting so long we just want it over and behind us!