First, the discharge threshold is really based on a patient's white blood cell count and specifically, the neutrophil level. Check...Parrish meets that threshold (exceeds it, actually). But this number says very little about a patient's pain, stamina and ability to perform daily functions. Parrish has shown a lot of improvement over the last couple of days, but by improvement, I mean that he has walked a few laps around the unit (and then had to spend the rest of the afternoon recovering from the exertion). I mean they are weaning him off of the morphine drip, as well as round the clock oxycodone; he is still having pain in his mouth, is unable to eat and can only drink about 6 ounces a day (as a result, he is still on IV fluids); and he is still having excruciating gastrointestinal pain (I will just leave it at that). Parrish is still receiving blood transfusions of platelets about every other day, as well as infusions of magnesium and potassium to regulate his electrolytes. He is beyond thin and extremely pale (which for Parrish is more like translucent). For the first time in a week, he actually wanted the TV volume on. Before now, he has just been staring at the wall, not wanting to watch anything, read anything or talk. Earlier this morning, he was trying to order something on his laptop and kept having to put his head down, too exhausted to even type (and yes, I offered to take over, but was met with a glare). Now, he is back asleep.
Perhaps the most disturbing thing is Parrish's personality. The last two weeks have been brutal for him, and he has experienced pain like I can't imagine. I am not sure if it is the pain or the morphine that has transformed his personality, but he has been downright mean. Edgy, agitated, mad...not the typical words a person uses to describe Parrish. He seems a little better today, but he hasn't been himself to say the least. The nurses promise me that this mood swing will pass and that it is common in transplant patients. Soon he'll be back to his old self, they say. But until then, the boys definitely can't be around him.
Just walking over the threshold of our house requires more energy than Parrish has. I get that Parrish isn't going to be able to pick up the boys or go on a walk with them or even help with baths and bedtime, but he is going to have to be able to smile, look excited to see them, and at the very least, engage with them for five minutes. Right now, that isn't feasible. Parrish can't get up the stairs to our bedroom unassisted. He can't stand up to take a shower. He can't get in and out of bed or back and forth to the bathroom with ease (or at times, at all). He can't eat. He still gets sick at his stomach most days. He can't be left alone...at.all. I guess in my mind, and because until this week I hadn't been told otherwise, I thought at discharge, a patient was just a little stronger, not 100%, but better than Parrish is now.
And, after discharge, Parrish will be back in the outpatient clinic everyday for a while. There, they will give him blood transfusions, electrolyte infusions, fluids, and more as he needs them. They will draw blood each day, see what his labs look like and go from there. There is at-home monitoring that I will have to do for Parrish (daily temperature reads, dietary restrictions, fluid intake and output, and more). And there are a variety of restrictions relating to what he can do, where he can go and who he can be around. I am sure Parrish will be really bummed to learn he can't help with any lawn care, housework, or food prep for quite a while (so some things won't change!). Until Parrish's platelet count reaches and remains at 50,000, he will be at increased risk for bleeding, so there are other activity restrictions relating to that count (for example, no driving).
I have mentioned before that the pre-transplant counseling that UAB provides is beyond sub-par. However, the in-patient nursing here has been amazing, and the discharge counseling wonderful. I adore Parrish's nurse and would really like her to go home with us. I just wish I had been given all of this information on the front end, months ago. I am someone who wants all the facts (maybe it is my legal training). I want to know the reality because then I can come up the tools to fit or fix that reality. I don't like to be surprised or scramble around. I am big on preparation, especially when it comes to protecting my family. I could have used a little more pre-transplant prep.
Even Parrish, who is all about pushing through and getting home, told the doctor yesterday that he was in no way ready to go home. That says it all to me. So, we have both voiced our concerns (did you ever doubt that I would fail to communicate my concern to someone?)...and we have been assured that they won't kick Parrish out before he is ready. But, we are moving in the direction of discharge. I have watched the required video on life at home with a transplant patient; I have met with the dietary clinician; this afternoon, I met with our nurse for detailed home life instructions; and tomorrow, I will meet with pharmacy to go over the at-home medication protocol. At the same time, my mom is working on the checklist for getting our house patient-ready. If there is a discharge test for the caregiver, I will pass it with flying colors, I tell you.
Today, please pray for continued improvement for Parrish...more strength, more stamina, more eating and drinking...and for peace for all of us as we enter yet another phase of this journey.
Much love,
Molly
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