I'm in shock and I don't know what to do/say/whatever.
He's 20 months old. His heart failed last night, and he's now on full life support and they're just waiting to see whether he pulls through. That's all I know. They have a one-month old too. They're in London so I can't just be there. Her parents are already on their way. I'm jump on the next plane if I thought it would help, but I don't think it would help.
Any insight on child heart failure? Any suggestions on what the right things to say are, and how often I should be checking in and such? Anything else I can do from a distance?
Thanks for any advice on how to deal in this kind of situation. ============================
Slight update: he's currently stable, though still on a machine that pumps his blood. He's having a procedure tomorrow. No idea on cause.
This sounds encouraging to me?
And thank you so much to all of you for your thoughts.
Post by spunkarella on Dec 30, 2014 8:34:54 GMT -5
I don't have any advice, but my thoughts are with you and their family. Little bodies can do really amazing things. I hope he pulls through and is okay.
I know nothing, but, ugh, I'm so sorry. That is truly horrible. I like the suggestion about offering to help arrange accommodations if you think you could.
I don't know anything about it but could you be the point of contact for information? I know a lot of people set up a Facebook page or email chain? If the parents could text/email you what information they want released- then you could pass it along to preapproved people? It might help alleviate the calls/texts and emails on their end.
I also like the suggestion of hotel/logistics arrangement if you can help. Or organize a group of people who want to donate $ and get it to the parents for Giftcards, food, pet sitting, etc.
Post by bananapancakes on Dec 30, 2014 8:42:33 GMT -5
I'm so sorry. Hugs and good thoughts for you and your family. I agree with trying to coordinate some meals for them. When L was in the NICU, the hospital food got old really quickly and we were so thankful when people brought us real food.
I'm so sorry. Could you offer to set up a CaringBridge page for him and communicate it to everyone and keep it updated for them?
This was immensely helpful when I had a sudden and serious family illness. We could update in one spot and everyone knew where to check, and we weren't constantly updating people on his condition (which is exhausting).
CaringBridge can even be updated via smartphone app.
Otherwise, I have no experience with child heart failure
You know the parents best. Some like space, some like to be surrounded. Some like to share the news very publicly, like like it kept private/to close family & friends. I'd try to arrange some food options for them, as they're almost guaranteed to love that. Anything else, you can talk to the parents or grandparents and see what they would prefer.
So scary. I'll be thinking of the poor little guy & family. I can't even imagine.
I agree, if you're able to be the go between for information, that could be helpful. Be it an email chain, Caring page or FB page, it would alleviate the parents from being bombarded by family & friends looking for updates.