It sounds like you guys have seriously had your quota of bad luck and its time for it all to change. I hope you're feeling a whole lot better very soon Glenny. Thinking of you daily little Charlie.
OK-Here's the deal as far as we know it. Yesterday we were led to believe that the time had come for us to make a decision about whether we allow further intervention or decide that enoough is enough. This was a shock to us (to put it mildly) as this was the first time anyone had said anything like this to us. We thought we were a while away from that kind of discussion. So that is the story behind the brandy last night and thanks for joining me. I had a lot of bb girls posting pics of their drinks on my fb page and it gav me a lot of comfort.
Anyway- fast forward to today, after not much sleep we went into the hospital expecting the worst. We had a meeting with Charlie's docs. It's not good but not as bad as we feared. Basically, Charlie is not able to be weaned again off breathing support. He will not survive off support, it's a matter of how long do we let him live, sedated on life support before we do somehting. The original plan to manage this medically until 18 months or so when we could replace the valve is not viable any more. But the younger they are, the less sucessful surgery is likely to be. Catch 22.
The next decision to be made (and they are still dicussing pros and cons) is to put a trach in for the breathing tube to be placed through. So basically he would be breathing through a tube inserted into a hole in his throat rather than down his nose and throat. Main pro- doesn't need to be so sedated and can be awake and ligtly mobile. Con- massive infection risk.
So, main discussion at the moment is trach yes or no and then we need to see if he is putting on any weight and that will sway the surgery discussion.
There was a lot more talked about, none of it good and all too hard for me to bring up now. He's not in a good way guys. He's in heart failure, on life support and stoned out of his mind on methadone and ketamine.
I just don't know what to say to you Glenny. My heart is just breaking for you, your husbad and your poor little boy. It is all so horribly unfair. Sending you love and strength to face whatever the next few days brings
Glenny I'm sorry to hear this news. I have no advice. My baby son was in heart failure for 3 months. He had multiple ASDs and a massive VSD and stenosis of the pulmonary artery. He had some surgery at three days old which was meant to be a temporary fix until he was at least 2 which was deemed a safer age to have open heart surgery. His temporary fix didn't work, and he remained in hospital being fattened up until he hit 5kg and the Drs decided the risk of waiting became greater than the risk of bypass surgery on a baby. The odds were horrifying, and Reading your post made me flashback to some of the difficult conversations we had with our son's treating Doctors. We were given a 2% survival rate before the open heart surgery. I am very grateful he survived and is doing really well now. I wish you peace as you make these decisions. I know it's gut-wrenchingly hard. I am praying for wisdom for you, and the best possible outcome.
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Glenny you are an amazing woman and an amazing mum.
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