Need to Scream

emg

scrappie wrote: »

I'm sure the hospital involved are not trying to 'avoid a tricky operation with high risk' - they are trying to make sure that a patient undergoing a high risk operation receives the best possible care, with the prospect of the fewest complications.

This. It's frustrating for you that they have changed the plan so late but it will be due to someone deciding the risks are too high and can be decreased by using the specialist anaethetist. It's about giving your son the best possible outcomes and will also be partly driven by risks around litigation.

HooCanTellMee

You have all made me feel very self centered and selfish. Despite your own problems you have taken time to talk to me and I am so grateful.
j.e.j.
I feel for you, to be cancelled twice must be horrendous even if the surgery isn't urgent the stress levels are hard to bear. I really hope that it is third time lucky for you.
marisco,
If waiting makes it safer I would be happy to wait, but this is a last minute decision that wasn't made by the surgeon. I thought he was meant to know best! This is an operation that has been months in the planning, plenty of time for someone to step in and object. I am finding it hard to believe that the surgeon would take unnecessary risks.
sassyblue,
That is all we can hope for now.
grannybroon,
My son seems to be dealing with this situation better than the rest of the family, but we were so strung up and now just lost! I don't think we will be given the choice of where the operation is carried out, and if it is truly safer in London then that is where we will go! I am sure there are cardiac anesthetists in Scotland, just that the surgeon had already got two anesthetists and felt confident with them. I don't know where we go from here, or even when.
scrappie,
I won't argue with anything you say, it is all very sensible. I want the best we can get for my son, wherever or whenever it is. It is hard to understand how we can have gotten so far then everything changes. Being told with less than a week before the surgery was such a shock and if there had been a more urgent case, a team member unable to attend or any unforeseen circumstance it would have been understandable. This just seems to be lack of foresight!
The pc tech,
Yes it is Scoliosis and I am so grateful for your offer of advice. However, it is the combination of problems that make this so much more difficult to deal with. I am not trying to say Scoliosis isn't a very serious condition, just that what can be done for my son is very different to someone with a "normal" heart. After my vent, I have calmed down and really do want the safest option. Now I have accepted that the operation will not happen on Wednesday I can start to move forward. Your offers are very appreciated and I hope that you keep in good health.
mum of lewis,
You especially make me feel guilty, you have a lot to deal with yourself and yet you take time to help someone else. I don't know how old Lewis is, and I know very little about diabetes, but my heart is with you. Sometimes hospital feels more like home than home! My son kept surprisingly well, so it was mainly regular clinics and he coped very well with his limitations. I think they often cope better than we parents! So extra thanks to you Janette, best wishes to yourself and Lewis, xxxxxxxx
gunsandbanjos,
Yourself and mum of lewis put me to shame, I don't know how old your daughter is, and although I can't call my son lucky he hasn't had to have many interventions. He has also been able to fulfil most of his plans so far, university and independence being the main ones. I can't even imagine going through the stress of many cancellations, two have been too many for me! Next time I feel like blowing up I shall think of you and realize how selfish I am! I wish you the best of outcomes and hope your daughter also manages to fulfil her plans, whatever they may be.
emg,
The decision that the risk is too high is totally understandable, the fact that it happened less than a week before the operation isn't. It takes away our confidence in the team, the surgeon and even the hospital. The vent was spur of the moment, I am still upset but resigned. The operation will not happen this week and that is fixed in stone!

gunsandbanjos

You're not selfish and self centred, you are a stressed mum who wants the best for her son! Watching your child go through surgery is stressful no matter how old they are, unfortunately from my experience a lot of hospitals work off 'emergency' lists and ops get bumped with very little notice to accomodate more pressing surgeries.
There is very little leeway in their schedules and the top surgeons are massively over subscribed.
I'm a member of http://www.scoliosis-support.org/ its a great little forum, loads of info for you and your son.

Thank you for your kind words about my daughter, she's a little star. She is 8 and was diagnosed at birth with scoliosis, had a spinal fusion done at 11 months old and growth rods put in when she was about 2.5, with lengthening done every 6 months. She has had great care so far - we're from Edinburgh too:) Nothing but praise for her surgeon and his team.

j.e.j.

Just wanted to say you are definitely not self-centred and selfish, - I can't honestly think of anything much more worrying and stressful than to have a child in need of a serious op. I do hope things work out for you and the op gets done asap.

Valli

just wanted to add that no, you're not self-centered and selfish at all. What you are is dealing with a difficult situation which I personally cannot begin to comprehend. Yes there are other people going through difficult times but, just right now, it's not necessary for you to worry about them, or empathise, or sympathise. Your energies are needed elsewhere.
And venting on here helps you get some of your stress and frustration out of the way thus meaning you can go back to supporting your family with renewed strength.

I do hope that the operation is done soon and that it's succesful. FWIW I would stick with having it where you are, rather than London; the 'team' there know your son.

And, once again, I count myself very lucky to have two happy, healthy, bright kids.

HooCanTellMee

Sorry for not getting back to the thread sooner, I guess my kicking up a fuss got some result, or maybe it was the surgeon. I have had several phone calls from various personnel at the hospital. The result is that they have decided to move his operation, but only from one Edinburgh hospital to another. We start the process again next week. So things may happen sooner rather than later! The reasoning is understandable, and we all want to minimize the risk but still can't see why we got so close to the surgery before they had a re-think. Despite my son just finishing his third year at University he will be treated by pediatric staff, who are more experienced with dealing with this combination of conditions. Wishing this had been thought of before, but only want the best for my son.
gunsandbanjos,
Yes, I was being selfish, there are a lot of parents out there, and you are one of them, that are going through so much. Sometimes we get so focused on our own what is going on close to home that we forget that we are not alone in having problems. Your daughter is having far more treatment than my son has ever had. For a lot of the time it was just check-ups and tests! I am not saying he doesn't have serious problems and limitations, but it could have impacted far more on his growing up. Your daughter is having treatment at least every six months! We may even be sharing staff now! Your daughter will be in my mind, I hope she keeps strong, children can be amazing, they just seem to accept their problems in a way that we just find so difficult. You found the time to care about someone else as well, in all honesty sometimes I don't!
j.e.j,
Thanks for that, but as I mentioned to gunsandbanjos it is too easy to get wrapped up in my son and his problems and forget that others can have far more to deal with. My son isn't a child anymore, he is at University. So he has at least gotten to adulthood and is independent. Lots of parents don't get the chance for the children to achieve what he has. I am scared, he will always be my baby, but maybe I should be counting some of my blessings!
Valli,
It is difficult, but I have to try to see a bigger picture, what has happened can't be changed now. My vent helped me deal with my feelings at the time, but it is now time to move on, we have new appointments to keep and reading the replies from gunsandbanjos, mum of lewis and The pc tech has made me wake up to what other parents are going through, it isn't just me and mine!

gunsandbanjos

You off to the Sick Kids then? May I be nosy and ask who his surgeon is?

Valli

HCTM - that is good news, hope the operation is done soon and is succesful
- but, as I said, yes there are people going through worse than you - but you are entitled to focus on you and yours and that is NOT selfish.

I know that, in my time, I have borne sole burdens - had I had to bear them 'all at the same time' I doubt I would be sitting here now. Sometimes it is necessary to block out the rest of the world and focus your energies inwardly.
Sometimes we can be givers; sometimes we need to be takers. That's the way of the world.
If I were nearer I would bake you a cake!

HooCanTellMee

Hi to you both, still on my side and for that support I am grateful.
gunsandbanjos,
Yes, back to where we started about three days after my son was born, fantastic staff, good at their jobs and so caring! Only complaint is about the terrible situation with parking near the hospital. We often take buses or trains rather than spend lots of time going round in circles. My son had a disabled badge for a few weeks after his heart surgery, but that didn't last long! Not sure about naming the surgeon, he has been very supportive but without asking his permission it wouldn't be fair to him, I do hope you understand. I need him to be on our side! We may even meet in a corridor! Don't know where they are going to put my son, an adult in a childrens ward? He will fit in perfectly, and will enjoy any fuss that is made of him! Hope he doesn't spend all the time chatting up the nurses!
Valli,
Don't, you will make me cry, I don't feel guilty about making waves to get my son treated, but it isn't about me and I really did need to get a grip! Don't mention cake, I am trying to give it up, my clothes are under stress! You sound a lovely person, so make the cake and eat a slice for me, you deserve it!

gunsandbanjos

Of course I understand, if its the same guy as does my daughters surgery you will be in very good hands (Mr T:)).

Have you made your muffins yet Valli?