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Big day tomorrow
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Hi,
I have been reading this with interest.My girl Shannon went for the plug procedure back in Oct,the same thing happened to her when they were in they discovered that the hole was to big to close this way.We were devastated we went from thinking its all over to all of a sudden been told she will need a much more complicated open heart surgery.
The we were given a date in late Nov/early Dec for the open heart surgery,and when we were just about to get into the car to head over to the hospital we got a phone call and told it was canceled due to a lack of ICU beds.This was another big blow its hard getting a 4 year old mentally ready for a long stay in hospital and then when you are just about to go its called off.
Anyway she finally got the open heart surgery done last Friday and it went without a hitch,the surgeon was very happy with it.We were told that should could be in for anything between 10 days to 3/4 weeks it all depends on how fast the child gets over it each child is different.I am glad to say some time today only 5 days after the operation I will be heading over to collect Shannon from the hospital.I spent last night with her and her recovery was remarkable even the doctors are surprised by it.
This procedure will be explained to you by more qualified people than me but from what I gather this is the most straight forward open hart procedure,its a bit daunting when they tell you its going to take 3/4 hours but this was explained well to be by the cardiac nurse.Basically any hart surgery it takes the guts of 2 hours to prepare the patient for the procedure,it then takes at least an hour and a half to tidy up again.So in this case its mostly preparation work and tidying up,the actual procedure they are going in to do could take as little as 15/20 min.
I hope this rests your mind somewhat,although all open hart surgery is a major thing this is the most straight forward operation these guys do.
After a long night with little sleep I hope this posts makes sense,if you fell you need to ask me any questions fire away as I no its nice to talk to someone who has been through this very recently.
Hi Dub, thanks for the reply
I'm really glad to hear your daughter is making such a wonderful recovery and she's being released today. It's certantly eased some of my own concerns but I think due to her being so small for her age and having Downs our little one will be recovering for a few weeks at least so we've accepted that as a given. I was told the procedure last night and it does seem that the bulk of time is taken up preparing and cleaning up but even the discription was pretty frightening. The waiting and then knowing it can be canceled at a moments notice is the worst thing, it's like you can't prepare yourself to cope on the day because you don't know for sure when that day will be so all you're doing is constantly trying not to get worked up. I'm in work at the moment and I can't concentrate at all. I hope your daughter makes a swift, full recovery and thanks again for easing my mind some. 
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She will be fine,and good luck to you all.
Another thing I forgot to mention is you will have a cardiac nurse assigned to you for the day,she will explain everything to you and what will happen and show you around ICU etc.But this most important thing about the cardiac nurse is she will ring you every 45min of so when the op is underway and explain what stage they are at,this helped us immensely.
I no its hard but the nurse told us once the operation is under way to try and leave the hospital for an hour or two,each min in the hospital can feel like an hour.We just went for a coffee and a walk and the nurse was ringing us as I said every once and a while.This helped the time move along a little faster and if you think you are up to it I would definitely try to get out for a bit,your girl will need you two when she comes around.
I knew we got assigned a cardiac nurse but I wasn't aware she phones every 45 minutes, that would certainly make a huge difference to both of us, 4 hours is a long time and the assurances that she's ok throughout would help alot. I'd agree that leaving for an hour or two would probably be a good thing but I doubt Hexx would be able to, she'd be in to much of a worried state and would have to go back but I'll sugest it to her. Thanks for all the info Dub it really has made a huge difference 0 -
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Clare Bear wrote: »Take care Hexx, you're being so strong, you really are. All the best.
That's my girl, in all fairness she has to put up with me 24/7 so this is a walk in the park
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tallaght01 wrote: »Hi Kazobel and Hexx.....
Just wanted to add my best wishes too.
I worked for several years at a childrens/babies cardiac specialist centre in the UK.
I don't know anything about the specifics of the case, so wouldn't comment on your little baby's case.
However, I'd make a few general points, things that tend to crop up again and again after operations.
1) Trust the team looking after her. Often these things get cancelled at reasonably short notice. This is usually for a very good reason. The human body is obviously very dynamic, and sometimes things just happen that mean you simply can't proceed that day.
Sometimes it's not even to do with your own child. People are often told the operation is cancelled due to "lack of ICU beds", which makes them pretty mad. But that usually means a kiddy has rolled into A+E dreadfully ill, who simply can't wait for an ICU bed. In those cases, we do sometimes have to cancel operations. It's not something we ever did lightly, and we hate doing it. it's also really hard to tell the parents/caregivers. So be aware that these things can happen,and try to keep strong if it does. Babies sense stress in those they love. If a parent/carer is stressed/upset, the baby will become stressed/upset.
2) These operations happen a lot. The team doing it will be very experienced. No operation is 100% safe. cardiac surgery is risky, no doubt about it. But bear in mind that the vast majority of babies do fine.
3) Be prepared for a rocky ride after the operation: Sometimes the time in ICU is the most difficult. Babies in ICU look terrible after they've been for major surgery. they have tubes and wires sticking out all over the place. Monitors will be beeping loudly, and there will be lots of activity. Sometimes these babies pick up infections, and can become unwell from that. Sometimes they need the ventilator longer than the doctors think they will. Sometimes they try and take them off the ventilator and it doesn't work, so they have to go back on it for another few days. All of this will be scary for you, but it's not unusual for the staff in ICU.
Some babies make a pretty uneventful recovery. Some have a real rough ride. But always remember that even the ones who struggle after the op usually end up doing fine. But it can take a good while to be out of the woods.Don't focus on the numbers on the monitors. Don't panic everytime one of them alarms. They will alarm all the time. Let the staff worry about that stuff.
4) Look after yourselves: Lots of parents understandably feel the need to be at the child's bedside 24/7. That's fine for the first day or 2. But the stress of this whole situation will exhaust you. You're of no use to the little one if you're exhausted. It will also impede your ability to understand some of the complexities of the treatment when it's being explained to you. When you're knackered, go home and have a meal. Then go asleep and don't set the alarm clock. Leave your mobile number witht he staff. they will ring you if anything happens.
5) Talk to other parents in ICU or high dependency. Many of them will tell you that their child was in the same position as your little one a few weeks ago. They'll tell you about weeks of hard recovery. Then you'll see their child, happy and feeding well, and you'll now there's light at the end of the tunnel.
As you know well, children with downs syndrome are very prone to PDA. So are very premature babies. I'm sure there's support group for the parents of babies with downs syndrome, and for the parents of those with premature babies. If you feel like it, contact them and ask if you can speak to a parent who's child has been through this surgery.
Sorry that's a long post. I would stress again that, as I know nothing about the specifics of your case, this isn't info specific to the operation that your baby is going to have. But it's stuff relating to the issues lots of parents face when their baby has surgery.
I sincerely hope it all goes well, and that you guys keep strong.
Let us know how you get on. You'll be in my prayers.
Hi tallaght01
I think this is the first time we've talked one on one, the post isn't to long and thanks for all the info but we do also know it all, I don't mean that in a bad way it's just my brother was a patient in Crumlin hospital too before he died and they were exceptional in how they cared for him so we know they'll do the best for Sarah. We know that an emergency might happen and an ICU bed may no longer be available on Friday but for now we have to assume it will be (It's a parental thing, you have to hope for the best). We trust the team 100%, they could have went ahead with the plug but chose not to only out of concern for Sarah and chose a more difficult procedure but only because they think she'll have a better chance, that must be a difficult decision for anyone to make and we have the utmost respect for them for being willing to take that responsibility on. The hardest thing for me now is Hexx was told today that after the operation Sarah will be in ICU for a few (6 to 10) days but the only people that can go in and see her are her parents, so her biological father (who's been down once for an hour to see her since she went in on Monday and wasn't there when they tried the plug) can go in but I can't, I won't get to see her until she comes out of ICU and that could be days
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It's horrible to think that they haven't a procedure to recognise the people who are important in your life, in these circumstances. In this day and age
But sure look the really important thing is that you know you both can trust the medical team. I couldn't say that of the staff in my local hospital.
I wish you all the best of luck!0 -
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