His lymphocyte count remained at zero for the 2nd day in a row.
It is a teeny, tiny shred of hope.
Shortly before starting today’s dressing change, David was finally able to bring his core body temp up to 96.8. It took 24 hours and it’s still not normal, but it was a small victory, albeit short-lived. After this morning’s dressing change, his temp had fallen to 92 degrees. 8 hours later, it is still only 93 degrees.
Each day will be like this. The gut-wrenching anticipation of what the day will bring. My days don’t seem to have an ending or a beginning. Each day is just a continuation, hour by hour. I may sleep for a couple of hours then I may be awake for 20.
Time is irrelevant.
Except in terms of his comfort, then time is everything. David is on outrageously high amounts of pain meds,all running constantly. Fentanyl, Versed, Dexmedetomidine,and Dilaudid, these run continuously in an attempt to keep him comfortable and sedated. He needs to be sedated while intubated lest he self-extubates, again. And he’s in pain. Lots and lots of pain.
These meds are not enough.
He also receives scheduled doses of Methedone and Ativan, one every 3 hours.
These meds are not enough.
He receives no less that 6 PRN’s approx every 1/2 hour. Fentanyl, Versed, Ativan, Morphine, Ketamine, Dilaudid.
Theses meds are not enough.
If you or I ingested all of these doses in the course of a single day, it would kill us, no doubt about it. His body just chews it up like candy, enough just isn’t enough.
So high is his current need that they decided to try a ‘Propofol holiday’. Tonite he’ll get 12 hours of constant Propofol, increased when needed, additional PRN’s every ten minutes, if needed. The pain meds will be turned down. If they could get through the 12 hours and wean him off the pain meds completely, that would be ideal.
Right now his pain receptors are so overloaded, the pain meds aren’t working. Propofol is used in anesthesia, so it acts differently than all the drugs he’s currently on. This plan gives his pain center a chance to re-boot. They’ll re-start the pain meds at the end of the 12 hours, hopefully at a more manageable level.
He’s five hours into his propofol holiday. He’s resting comfortably for the first time in days. So far, so good.
Another tiny shred of hope.
All the doctors come to the re-dressing of the babe. The most important are the Oncology docs – they are the ones who treat the GVHD with a fair amount of regularity. They are the ones who determine his course of treatment.
They gather around inspecting his skin for the tiniest bit of improvement. Even though his skin is angry red from where the top layer of skin is sloughed off. Even though there are signs of new blisters forming on what little bit of intact skin he still has. Even though it’s only been 2 days since they administered the campath. They uttered words that were music to my ears…..
We are cautiously optimistic.
I will tuck it away and not flash it about, some things are meant to be savored, shared quietly among friends.
Maybe sleep will come a little easier tonite with that wee gem tucked under my pillow…..