My baby had a broken heart!

I just had a baileys with you glenny, hope you enjoy your brandy

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I'll definitely have one for you tonight, Glenny.

Sending you hugs and strength.

Thinking of you today, Glenny.

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.

More waiting........

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

I don't know what to say, I'm so sorry you need to make these decisions :hug:

You and your little boy are constantly in my thoughts

I don't know what to say either :hug:

Will be thinking of you guys

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. :hug:

(hug) thinking of you and praying for you.

glenny Im so sorry you and your family are going through this. Sending love and strength to you and your DH as you face these difficult decisions xxx

:comfort: :hug:
Glenny, I wish I could give you a hug right now. Im so sorry you are having to have these talks with the drs, talks no parent should have to have aboutr their children.
We keep you ,master Charlie and your family in our thoughts and prayers. Sending you much strength, love, and support xoxo

Glenny :( I just can't imagine how heartbreaking it is to see your son like that. Thinking of you all xoxo.

Thinking of you guys as you have to walk this road with so many decisions and so much information to process :hug:

Glenny, still praying my ass off for your baby boy. Much love, always.

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Glenny, I can't imagine how hard this must be, sending love and strength to you and DH during this difficult time :hug:

I'm so sorry you are having to make these decisions. :hug:

I'm so sorry you have to face these decisions. Big hugs to you and your family :hug:

Oh Glenny :hug: :comfort: I am so sorry you are having to deal with these decisions. You and your family are in my thoughts every day, I wish there was more I could do get:hug:

So sorry you have such hard decisions to make. Huge hugs and love for you.

xoxox

Oh glenny. I'm so sorry. Sending you and Charlie strength.

Oh glenny hugs. What a difficult decision. I'm sending my prayers that you make the right choice. Sending my thoughts to you, your DH and poor little Charlie.

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Oh Glenny, what a rough day. :(

I hope whatever you decide he can gain weight and get strong enough for surgery as quickly as possible. :pray:

Hugs for you and your little man. Praying for you all xx

Thinking of you as you deal with this heart wrenching time. No one should have to be faced with these kind of decisions about their children. Get all the information you can. Make lots of notes if you're not already. Get second opinions. During stress, we often miss details or forget things people just said to us.

We make the best decisions we can with the information we have at the time. No matter what decision you make, later there may be what ifs. This is normal and you'll deal with them at the time. Right now, take time to absorb as much information as you can whilst you're in shock. Sometimes we just have to make the decision to do the next thing, then make the decision to do the next thing, then the next, without knowing all the permutations and possibilities. You can't predict the future, so take all the expert advice, then make a decision based on what you know about your son.

Do you have support from any social workers? If so, is it any good? If you think they're not helping, ask for someone else. Counsellors can often sit in on meetings and help interpret medical speak into laymen's terms, if you need it.

Also, in case no one has mentioned this, Heartfelt are available to take photos of sick children, whatever the prognosis. The SW should be able to organise for you. They are very kind and sensitive.

I really wish you weren't dealing with this nightmare, but given you have no choice, I wish you resilience and strength. Lots of gentle, healing cuddles to little Charlie.

Words fail me, so I'll go with what L&B said. She is a wise woman.. Lots of love and strength (and brandy) :hug:

:( I just cannot fathom what you all are having to go through. I'm so sorry, Charlie is holding a special place in my thoughts. Love to you all x

Sending you and Charlie love & strength :comfort:

Glenny, my heart just breaks for you hun. I wish that you weren't facing all this heartbreak and difficult decisions. I wish Charlie wasn't going through this, I wish he didn't have such a rough start in life. I'm always praying for you all, especially for little Charlie. I hope that he continues to find strength to fight all this. Massive hugs to all of you, and know that you're never far from my thoughts and always in my prayers :hug:.

Sending much love, support, prayers and thoughts. My heart is just breaking for you all. You are an amazingly strong little boy Charlie :hug:

Oh Glenny, I am so sorry to hear your latest news :hug: :hug:

Sending you strength, for you are being tested beyond belief.
Sending you love, because you cannot have too much.
Sending you hope, that each day he will prove them wrong, and continue to improve and surprise them.
Sending you comfort for all the hot bitter tears & grief. Your babymoon wasn't meant to be like this.
Sending you wisdom, to know that at every stage you are making the best possible decisions you can, despite negotiating a minefield.
Sending you forgiveness, because sometimes we beat ourselves up for the smallest and silliest of things. You are amazing. Charlie is amazing.

If the strength of my wishing could do it, he'd be better tomorrow. Thinking of you all, every day xoxoxox.

Thinking of you and your family Glenny
:hug:

Glenny if only there were words that could bring comfort at these times, may your lil fighter keep up the good fight & I hope you & your family getting all the support you need. Take care x you are always in my thoughts x

I am away with little internet access but I came in search of this thread. I'm so so sorry to hear this news Glanny. Much strength to all of you.

Praying for lil Charlie and the decisions you are faced with at the moment and in the future.

No words, just more hugs. :hug:

Oh glenny... I cannot imagine what you are going through... Sending you as much strength and love as I can :hug:

Glenny I don't know what to say, but just wanted to send you prayer and love for what your beautiful boy and family are going through.

Janie xxx

Oh Glenny. How on earth do you deal with this, how on earth would I ever deal with something like this. Positive, soothing Thoughts and wishes for your family.

I have no words. Just sending your family all the strength I could possibly muster.

oh Glenny:( i have followed this thread from the start but never knew what to say...and i still don't. no parent should ever have to make these kind of decisions about their children. i will keep praying for you and little Charlie and ask that you be given strength, guidance and support as you navigate this journey.

lots of gentle :hug: to you and little Charlie





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