5 year old son having VSD closure

[MrsMarsh19]

Hi all, after a few years of being told that my son has a small VSD and nothing to worry about, we were then seen by a consultant from St Georges and then Evelina at our new local hospital as we moved counties and it turns out he also has a coronary cusp prolapse so he is having open heart surgery at Evelina to close the hole in 2 weeks. His pre op is next week, so hoping we will find out some info then, but I only know what I've found on Google and Evelinas website. I was wondering if anyone could tell me what to expect, including when you got them home, has anyone stayed at Evelina too? As that's what we're going to do. It's really started to hit home that this is happening now. He's the most awesome kid.

[Khartoum7]

Horrible time for you...I would imagine you feel really helpless BUT they've found the problem and they will deal with it properly and professionally.Try and stay strong...people will be thinking of you!

[Hidden]

Dear MrsMarsh19

I am so sorry that I can’t help with your question, I am here just to send love and thoughts for your son and the rest of your family.

Take care and please let us know your progress

[Hidden]

Hello

I cannot tell you what to expect and I can only imagine what you are going through and bless you Son he is so young but I will say he is in the best hands these are the best the experts and before you know it he will be running around and full of energy again

Please let us know how it all goes and know you can come and talk whenever you want and always someone to listen even if like me I don't have the answer I can offer a listening ear which sometimes helps x

[Chappychap]

I can only imagine what you're going through, But be assured, the heart surgery teams in the NHS are some of the world's best trained medical staff, so your boy really will be in the very best hands.

This is a leaflet that's given to open heart surgery patients leaving hospital, it's from Liverpool hospital bit they're all pretty similar. It's for adults so much of the advice (ie driving and going back to work!) may not be relevant in your case. But at least it will give you some idea of what to expect in terms of recovery times, and perhaps prompt some questions for when you next meet the doctors.

lhch.nhs.uk/media/1099/card...

One of the key lessons I learnt from my open heart surgery was given to me by a very experienced cardiac nurse. She explained that as soon as the chest cavity is punctured the lungs collapse, and they stay collapsed for the duration of the operation. Fully reflating the lungs is one of the most important challenges for the patient once they get home. It involves breathing and coughing exercises to be completed multiple times each day, and daily walks of regularly increasing length. These are the key things that will ensure the last little pockets of micro collapse in the lungs are fully reflated.

In the first couple of weeks none of us really feel like doing these exercises, but encouragement and cajoling are the order of the day, because the more diligently they're completed the faster the subsequent recovery progresses.

I appreciate the stress you must be feeling, but the professionalism and compassion of the hospital team will absolutely blow you away. These people are totally inspirational, and I'm 100% confident that they'll bring their "A game" for your boy!

[Heyjude31]

Hello, I am not able to provide any answers, but suffice to say I am thinking of you and sending you lots of love and to say your son will be in the care of the professionals who undoubtedly will provide the best care possible. With love and strength, Judi

[Midgeymoo17]

Being 5 he will probably be a bit tired, need time out of school etc. But life around the house will just feel a bit like a normal sick day from school. I was damm bored after my surgy. I could easly over do it but was bored stiff as I did not feel unwell- so maybe try and come up with a list of low enegry activities for his mind.

On the tiredenss note- there maybe more sleeping than normal and as the adult you may need/ or feel the need to put the breaks on a bit to prevent overdoing it. However, do not over restrict. There is nohing wrong with extra sleep afterwards- the issue is when its feeling ill from overexertion instead of just needing to sleep. If he wants a friend round to play or something - let him. His other development areas must ,as far as possible, not be neglected including social time with friends. Equally if he wants to visit friends t/ paticipate i Birthday Parties etc try and find a way to accomodate it. It is important for him, his recovery, return to school and it is equally important for you psychologically as a parent to to regain your trust that normality will return and your son will do normal things. I am speaking from my memory of being off school aged 5 after major abdominal surgery for a congenital issue- an 2x OHS where I stayed with my parents and seeing their reactions.

You might need to watch out for example- reaching for things above his head if you are told by his surgeon not to do that. An action like that is intuitive if for example he wants toy that is above his head but might be unadvisable. They understand no but if it something they really want they will forget.

I am preety sure, I was also told when applying to volunteer in a boarding house of children recovering from OHS by an Israeli Charity - do not pick them up under the arms. The lifting action can be very painful and puts pressure through the healing breastbone and should be reserved for moving them only if they are doing something that would endanger them. It is preferable to get hold of their hands and guide them. --- but check with your surgical team. This memory is now maybe 7 years old.

[Milkfairy Heart Star]

Hello,

You have had some great advice already.

Are you aware of the various support groups for families with children born with heart problems?

You may find these groups can help you further.

chfed.org.uk/

tinytickers.org/

I wish you and your son well.

The Evelina is an amazing hospital and I am sure your son will receive the best of care.

[Solesofhershoes]

Massive well wishes for his op and surgeons are amazing so he will be back to normal very quickly I’m sure. Take care ❤️🙂

[Exie8]

Wishing you well. Your son will be in the best of hands and the hospital will give you all the support and advice you need. Children do bounce back very quickly after surgery.

[Glynnw]

Hope it gies well & Im sure it will.I had a similar OP at 5 yrs old . No problems since.

[Redsea]

Hi , my son had a VSD repair two days prior to his 11th birthday. He had surgery at Alder Hey Hospital in Liverpool a few years ago. We endured many years of worry and concern but thankfully with just a couple of minor problems post op he did very well. Be prepared for several hours waiting and worrying whilst you precious child is in surgery, if you can get out of the hospital even if you just sit in the hospital grounds do so. When back in intensive care don't be alarmed at all the monitors ,they are keeping your child safe. The thing that shocked me most was when I touched Tom, he was so very cold! I had forgotten they cool their little body to protect it from damage. He spent 24hrs on the ventilator, this varies from child to child, day two he was moved to high dependency for another two days, during this time he was pain free, eating and drinking, by day 10 he was discharged home. The difference in our son was what I called a miracle! After years of stress and worry with him being poorly, too thin and no energy, within a month he gained weight, was able to play football and enjoy being well. When he went into Alder Hey he wore aged 3/4 year clothes, he made me cut labels out because he was embarrassed, in two months he gained 3 stone. He was seen in outpatients until he was 18. Now he is healthy happy and we wish he would move out! We are so proud of what he's achieved, we never thought he would make it, but He Did! You will go through a journey of worry and stress but hopefully your little darling will come through this and will be fixed and have a wonderful happy, healthy future. I feel for you, if you need to talk about anything let me know and I will try to help. Good luck and I hope you are all excited and happy very soon. Xx