While David’s lymphocytes did make it to zero this morning, he has not had the best of days. The real test will be if they remain zero. Only tomorrow will tell, what, if any, more steps can be taken.
The Shriner’s doctor came to his re-dressing today and suggested a different type of dressing. We were able to get him re-dressed in less than 2 hours, with an ultrasound thrown in for good measure. The day had been looking up.
For every gain he seems to make, there is always something taken away. During his previous dressing changes his core body temperature dipped quite significantly. But with the addition of his own personal heater called a Baur Hugger and layers and layers and layers of warm blankets to keep the warm air on him, he warmed back up, usually within the same amount of time he was uncovered. 4 hours uncovered the first day, 4 hours to warm up, 2 hours uncovered yesterday, 2 hours to warm up.
2 hours uncovered today, I expected him warmed up by 12pm. It is a full twelve hours later as I write this and he still has not warmed up. His core temperature hovers between 94 and 95 degrees. Infection is the worst possible problem for him right now. His inability to maintain his temperature is as dangerous as a prolonged fever. Maybe even worse. A dose of tylenol won’t bring up his temp.
This is yet another set-back I did not see coming. They have switched around his antibiotics, in the hopes they can catch the bug if that is truly what’s happening.
“I am concerned about this development.” This statement is almost the worse thing you can have the attending PICU doctor tell you at 1 o’clock in the morning.
“We need to have a talk.” That’s the worse.
Our Favorite Fellow came to have the *talk* with me, Monday night. You know the one. The one were the nice doctor comes to tell you your son is going to die.
Yeah…the one you never, ever want to have to listen to………again.
“Do you understand how sick David is?” Do I really have to say it out loud?
“We don’t know what’s wrong with Nathaniel.” I don’t understand…
“How do you think David is doing?” Really? Do I really have to say it out loud?
“There’s nothing more we can do for Nathaniel.” I don’t understand…..
“Would you like to discuss David’s condition with the other team members? ”
I especially don’t want to say it out loud in front of every one.
“We’ve turned off Nathaniel’s life support.” I don’t understand….
Have you told your family how very, very sick David is?”
I get that ‘very,very sick’ is a euphemism for dying – I get it – I do,
WHY DO I HAVE TO SAY IT OUT LOUD?!?!?!?
Do I have to come out and say, yes, I understand my son was laughing and giggling last week. My son was smiling at me every time he woke up. My son was happy to look at toys and snuggle against me every time I got to help change out his crib.
Do I really have to come out and say, YES , I UNDERSTAND that he’s riding the wave of narcotics that would OD the healthiest adult and all of his skin has sloughed off and his belly doesn’t work and he’s in immeasurable pain, regardless of the truck load of narcotics he’s on, he can’t maintain his body temperature, regardless of the fact it’s 90 frickin degrees in this room and he can barely open his eyes because he’s so swollen with fluid overload.
Do I have to come out and say that yes, I understand I can no longer hold my sweet baby and yes, I understand that he may, that he could very well die right before my eyes, no matter what else you do to treat him?
Why do I have to say it out loud?
Why can’t it be whispered to the wind, never to be heard, therefore never made into concrete thought.