September 29th, 2016 (Day +6)
The feeding tube was taken out today because, although it eliminated much of the pain on eating/drinking, it was adding to Jess’ throat irritation.
Her pain is much better controlled with the Fentanyl pump. Even with all the scheduled meds she is on for nausea there is still breakthrough and maxeran helps with that. Diarrhea has been a problem as well, I suspect because of all the fluids and no solid food to speak of.
She was able to have a shower and we played a game of Skip Bo. Even under the slight influence of narcotics, she beat me!
September 30th, 2016 (Day +7)
I can tell the pain is better controlled because Jess has asked me to bring jello, mashed potatoes, baby food (fruit), and .. wait for it ..steamed broccoli! We’ll see how much of it she actually eats but that she is fancying it is a step forward.
Little bit of urinary incontinence today (that’s exciting!) and she’s exhausted. The care is excellent but the CONSTANT vital checks, starting/stopping IV drips, pumps alarming, doctor, physio, pain doc visits not to mention having to get up, unplug all the pumps to pee every 30 minutes then plug back in and get back into bed there is very little opportunity for meaningful, rejuvenating sleep.
Tongue in cheek, she was looking forward to losing a bit of weight through all this; so far, she has gained about 2 kg while eating only nibbles for seven days now. I suspect it’s fluid.
Because her platelets are low she is bruised all over, has been having nosebleeds, and has a big broken blood vessel in her eye that kinda makes her look like she’s been in a fight … which I guess, metaphorically, she has for a long time now.
October 1st, 2016 (Day +8)
The great news is that Jess now has some white blood cells to speak of !!!!!!!! She seemed to have bottomed out at <0.02. The doc was ecstatic today when he came in because she’s at 0.1! Definitely going in the right direction … com’on new immune system … you can do it! I believe in you! You can be anything you want to be when you grow up, even a new Jess!
Jess had a mostly sleepless night because of some of many of the interruptions mentioned previously. Her legs and feet are very swollen from the copious IV fluids. This morning the doc halved her IV hydration because she is taking in more water/ice/Ensure by mouth now so she should see some relief from the constant bathroom runs and lower leg swelling over the next 24 hours or so.
She received a bag of platelets earlier this afternoon.
Mama bear that I am, her room has been prepared for sleep (shades down, check; white noise on, check; sign on the door that says “quiet please … she finally sleeps”, check) and I’m sitting guard. No one is disturbing her unless it’s imperative and they get past me … we are now one hour into a lovely nap.
This post has not been reviewed by Jess; she would never have let me tell you about the urinary incontinence or the diet plan 😉