They came for me today.
Folks I’ve known for years now. Folks who have seen me through the transplants, the illnesses, the seizures and the surgeries. Through good blood-work and bad, these folks have always lent me an ear when I needed it. Folks I’ve had the privilege of sharing 3 of my sons with. Entrusting them in their capable hands.
They came for me today.
But it doesn’t really make the *talk* any easier, now does it? For them or for me. And yes, our Favorite Fellow had the *talk* with me at Thanksgiving, when the GVHD flared then and he couldn’t sustain his temp and his skin was all blistery and melting away. But this time, *sigh*, this time is different.
This time, it’s the folks who know us so well that have to be the bearers of bad news. The messengers that discuss DNR orders and how and when to decide when enough is enough. Can there ever truly be a time when I have to say ‘enough’?
His condition isn’t very much changed from yesterday. They tried to decrease his immunosuppression just a bit by reducing the steroid dose and stopping the Prograf. It worried me then and it worried me this morning. The last time they stopped the Prograf was Thanksgiving. I think we all remember how
well that went.
So when I came in this morning, after only a couple hours of fitful sleep, and saw the rash, my heart fell. My immediate thought was please re-start the Prograf. And they did. The steroids were increased as well. So far, no blistering, just a bumpy rash.
The biggest set back he had over night was with his ventilator settings. He has been on pressure ‘support’ since his original intubation at Thanksgiving. The adenovirus, the VRE, the excess fluid and the shear longevity of his intubation have all contributed to his lung’s inability to work effectively. So they switched him to both pressure ‘control’ and pressure ‘support’, increasing the settings as needed.
Capt Snuggles is a balancing act on so many levels. His kidney’s are weakening along with his lungs. There is a very real possibility he could end up on dialysis. If his lungs continue to weaken, a different ventilator will be brought in – one that does all the work of breathing. The one you unplug when you finally say ‘enough’.
It’s so hard to formulate thought when someone is calmly discussing at what point a DNR order should be created for your son. When someone says that you should call your family and ask them to visit, that maybe now is the time to let the boys have some time with their baby brother, when someone says these things to you – what do you say in return? Cognitive thought leaves you and all I could think was “Who the hell am I going to call?”
My mother ran away years ago, my father is 70 and won’t want to drive down from Chicago by himself. I can’t expect my older kids to run down from Chicago, leave school and do what? Say good-bye to a baby brother they never met?
My mother-in-law wanted to come down this afternoon, but the roads are bad with snow and she was upset, I surely didn’t want another catastrophe on my hands, so I told her to wait. Sister-in-law called to say they’ve got sickness in their house – I told her to stay away, the last thing we need is another bug.
How did we ever get to this dark place?
It’s almost comical in a near hysterical way – the one bright spot late this afternoon was his adeno counts coming all the way back down to 5 million from last night’s 15 million.
Life is a fickle bitch sometimes, isn’t she?
Someone asked me if it was okay to pray for us. Absolutely, Please and Thank You, feel free to send all the love and positive energy you can muster our way. I may struggle within myself about the Powers that may or may not be. But I don’t care if you pray to Vishnu or Buddha or Allah or Yahweh or Jesus or G-d or even, Zeus himself. I want those positive thoughts. I need those positive thoughts. I will be greedy in my quest for as much love and good, wholesome, positive energy as I can squeeze from you.
Does that sound fair? I will pour all my dark, heavy fears, hopelessness and negative energy out into the universe and you guys will send it all back, bright and new, a hundred times lighter and more positive than before.
Captain Snuggles is waiting……