A friend of mine

A virtual friend of mine's child is dying. She asked for advice and how we handled those last dark days with Jack. This is what I wrote:

Jana,
I am HEARTBROKEN to hear this news and I fear you aren't going to like my response. 10 days before Jack died the docs told us that he wasn't going to make it, that they could not get his kidneys functioning and that his infection was basically rampant throughout his body and not responding to the antibiotics. I could not believe it. Not my son, not this terrible scenario.

48 hours before he passed his lactic acid numbers kept rising, along with his white blood count. They could not tell us why either. 13 months (to the day) later, this is what I think happened. They could not get Jack's heart "fixed" enough to come off of the vent, he probably had a botched cath where the device did not fully deploy to close some VSDs that he dad. The next heart cath fixed those holes but by that time the damage to the rest of his systems was too great to overcome. He was on dialysis (another nightmare) and they could not get the fluid off of him. He also had a persistent infection that they kept monkeying around with the antibiotics. His WBC would get to a manageable level, then they would dial back the antibiotics and the WBC would come back higher. They did this one too many times, and the infection is what eventually overtook him. I hate the term lactic acid, it makes my stomach hurt. His rose steadily over those last few days, they told us basically that some muscle(s) in his body were dying and they did not know what or how to fix. I remember the general surgeon coming in on Christmas Day and shaking his head, saying there was nothing they could do.

In terms of what I would have asked differently, I don't know. I think that we asked all the right questions, it was such a muddled mess of things that there were no answers just sad looks and sighs. I wish that I would have been more persistent up until that point of fixing his damned heart and getting him off the vent. I regret that more than anything. I wish that I would have shaken Dr. Del Nido to his core and telling him to pay attention to this child and FIX HIS HEART!

The last days were so sad and dark. I was dealing with my mother in law and 70+ year old parents who were a mess. My husband was a mess. I was trying to manage them plus make my son comfortable. I now regret not taking time for myself to really take a step back and mourn what was happening.

Some things that we did leading up to 1/26/09.....

I made sure someone was always holding Jack's hand, kissing him and talking to him. We would talk about the things he liked to do, play with, shows he watched on TV and his brother. I wanted his mind to be fiilled with happiness, not sorrow or fright.

I called my other son and had him "chatter" to Jack on the phone, so Jack could hear Will's voice.

I kept the room dark, his noisemaker on and the chatter to a minimum. To be honest, I was quite a bitch about all that for I have a mother in law who likes to run her mouth and a mother who prays the rosary constantly.

When the time came, we took Jack off the oscilating vent and Sam held him, then I held him. It was very peaceful. I felt honored to have watched him come in the world, and then hold him as he left this world. I am not going to sugar coat this, it was awful (just remembering it has me crying in my cube at work).

After he passed away, Sam and I asked everyone to leave the room and he and I took every last bit of tape and gunk off of him (with a nurse's help) and gave him a bath. I am a big believer in the fact that my babies sleep better when they are clean. They brought a warming light in to keep him warm, we covered him up then the rest of the family, nurses, staff could come in and say there good byes.

I made molds of his feet and his hands, along with stamping imprints of them on paper. I also cut a lock of his hair.

Saying goodbye to my son, my firstborn, my challenging child was the hardest thing I ever had to do. If you think you can imagine how hard it was, think 100,000 times worse than that. Do not have any regrets, make sure YOU are comfortable with the decision, with the choices, with the way things go down. I regret not holding his hand more, for not fighting more, for feeling like we made the wrong decision in going to Boston. I feel tremendous guilt over any pain, uncomfort, fear or frustration he felt. I feel guilt over leaving him to go home to sleep, for leaving his room for one second. I will live the rest of my life with that guilt, for I was his mother, his advocate, his protector. Not that my husband isn't great, but moms are different that dads.

We have seen a grief counselor for the past year and she keeps telling me to let the guilt go. I have finally convinced her that I never will. That child grew inside me, I cared for him, I managed him, I handed him over to people who I trusted with his life. Those were our decisions and since he is not here, did we do the right thing?

This is probably more than you wanted to know. Sorry for that, guess I got on a bit of a tangent.

My advice is to follow your heart, do what you feel is best for Sophie, make her comfortable and don't have any regrets.

Peace and prayers to you today Jana.

With tears in my eyes,
Bridget