Mumsnet Talk

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.

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.

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.

Good luck for tomorrow RNW.

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

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

Good luck and I hope all goes well.

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

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.

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.

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.

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.

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

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

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