My 8 month old is having heart surgery next week, what do I need to take to the hospital?

[RNW]

Hello,
My 8 month old is having some investigations, and open heart surgery next week on a large VSD. He will be in for about a week it looks like. The whole thing has come as a bit of a shock, and we are reeling quite frankly.
Any ideas of a list of things to take to the hospital would be great, as I can't think straight. I will be allowed to stay with him. I also need to find a way of expressing milk whilst I'm there. It will be at the Evelina Children's Hospital. Thank you.

[tholeon]

Glad he is through it but so sorry about the complications, I am sure there are people in the echo support group who have been through the same thing x

[beautifulgirls]

Hi RNW, I have been wondering how things have been. So sorry to hear about the complications. I hope things get sorted out soon and he is on the mend X

[DameSaggarmakersbottomknocker]

Glad the op went well RNW but so sorry about the complications.

I post and mod here on the Heartline message board - there are parents with children who've had trachys and also a couple I can think of with vocal cord issues. Do pop over for a chat if you wish to. x

[minmooch]

Hi RNW glad your DS op is over and that the repair was successful. So sorry he has had other complications and hope that these get sorted quickly.

My DS is much older and has other problems (brain tumour) but at whatever age it is terrifying to see your child so vulnerable and the feelings of helplessness can be overwhelming.

Hospital living is very draining (and yet I was terrified when we were discharged) so keep resting when you can and I hope you get home as soon as possible.

[Seriouslysleepdeprived]

So sorry you had complications, I can only imagine how stressful the whole thing must have been.my thought are with you for a speedy recovery. Hope your LO is home with you soon.

[NosFarlotu]

Very happy to hear the repaor was successful but so sorry he has had so many complications . Thank you for updating, I have been thinking of him and hoping it had gone well, I will keep everything crossed for a full recovery. for you, you have been on a rollercoaster to hell and back.

[RNW]

Hiya,
Just a quick update,we are still at the hospital in PICU, the staff have been wonderful-kind,compassionate and brilliant at their jobs. We've had some rather rough times, my poor baby has been re ventilated 3 times so far.The repair for the VSD was successful,but in doing that and trying to do other bits,the nerves to his vocal cords got damaged and are paralysed.He will be having a tracheotomy later in the week. I'm hoping that this will be short term.

[NosFarlotu]

Good luck, thinking of you and hoping it all goes perfectly.

[Ilovecake1]

Good luck and I hope all goes well.

[beautifulgirls]

Good luck with everything. Please update us when you can X

[RNW]

Thank you very much.We are in the hospital and settling in for the pre-op process.

[DameSaggarmakersbottomknocker]

Good luck for tomorrow RNW.

[DameSaggarmakersbottomknocker]

The waiting's the worst bit RNW,hope it comes round quickly for you. When dd had her longest hospital stay I had two little ones too; thankfully had lots of support at home.

[RNW]

Thank you for your good wishes and continued suggestions. We have been given a date for a week on Wednesday, I am little disappointed we aren't in next week as the waiting is torturous,but I'm really glad that cancellation has been mentioned-if I keep that at the back of my mind as a possibility,then hopefully I won't have a melt down if that should be the case.
I have 2 other young children,so at least I have longer to get organised with them, and for them to have some normality for a week or so first.

[scaryg]

Also just noticed your bfing, there will be expressing facilities in PICU and on the ward. If you haven't done it before, be sure to ask for help asap. Also my DD feeds frequently (probably due to the heart prob) and we normally co-sleep and I was knackered after I handed her over for surgery, so I'd recommend just chilling out e.g don't go for a long walk just sit quiet somewhere.

also would say don't overload yourself with visitors right at the beginning, we've decided not to have anyone in PICU but wait until she's back on the ward for people to come.

[scaryg]

Hi, my DD 9m is due to have OHS at Southampton, we're just waiting on results of some blood tests. She has already had a catheter procedure and I found having a sling and/or pushchair useful for time spent pacing with her when she was nil by mouth before the op. Also check if the ward has a facebook page, I find ours really helpful, you might catch up with those staying at the moment.

[Seriouslysleepdeprived]

Just wanted to wish you luck too. DS has a VSD & is u set the Evelina. Hope it all goes smoothly.

[DameSaggarmakersbottomknocker]

Hi RNW - my dd has a complex heart defect so just wanted to wish you all the best for the surgery. tholeon is right about the cancellation issue, it happens quite a lot and is very difficult especially when you've psyched yourself up so fingers crossed it goes ahead first time. x

[tholeon]

My ds's issue was a double aortic arch, he is a healthy three year old now. The one thing I would add is to be prepared for the possibility that the op might be postponed at short notice, due to another emergency, either needing the operating theatre or the picu bed. It happened to us twice and I found it very stressful as I was all psyched up for him to go and then we had to wait longer, so best to be aware it is a possibility. The staff on the ward are all lovely and you will probably meet and talk to other parents which will get you through. Be prepared for little sleep and line up as much practical help as possible if you have things that need doing at home and/ or other dcs, because you will want to pretty much live at the hospital. X

[RNW]

Thank you.Very handy to know about the support group forum. I'll have a look and find their website. Hopefully the op will take place next week now.They have pinpointed further complications involving the aorta,but they seemingly have a plan to sort that and the VSD out in one go.We'll just keep our fingers crossed that the surgeons have steady hands!

[tholeon]

Can't add much to what others have said but my ds had a cardiac operation at the evelina three years ago, when he was five months. They are very good. There is also an excellent patient/ parent support group, called echo. There is a website and an email forum so you can find others going through the same experiences. X

[beautifulgirls]

Sorry you can't put this behind you today after all, but sounds like the longer term may be better for him anyway. Let us know how you are getting on.

[RNW]

Thank you once again for the suggestions. We are now back home until tomorrow when he needs an MRI scan before the major op,which will probably now be next week. The doctors found a couple of problems yesterday which make the operation much more serious, but when fixed should mean that he will be much healthier overall. So,the waiting games continue! At least going in yesterday gave us all a better idea of what to expect..

[Sunshine78]

Hi

My dd has a lot of hospital trips and I always take (although if having an op perjaps get someone to bring after when can eat) any favourite drinks/nibbles your child likes as my dd want always eat/drink what hospital provide!

I also take things like wordsearches (dont use much brain power but keep brain occupied!) Tacky magazines are another good time filler!

Lots of changes of clothes/layers for both of you - amazing how much you get through (I always leave some at home as you dont always get much space but already packed for dh to grab and swop with the dirty ones I have with me.

Flip flops/crocs - so you can keep them on when having a shower are an essential! Even is clean you dont know who else has been before you!

Just remember anything you have forgotten some one can probably drop off for you or hospital will have emergency supplies (once a nurse even gave my asprin from her own back as I looked so rough with a headache!)

Just remeber to take care of yourself and eat even if you dont really feel like it!

[FarloWearsAGoldRibbon]

Good luck this week RNW, thinking of you and hoping it all goes absolutely perfectly.