Alexx writing with Mom’s input. Sorry for the delay in updates; sleep-deprivation got the better of me. But thankfully I’m well rested again and updating all of you lovely people.
April 25th and 26th Day +18 and +19
Last night I had a fast heart rate. 140s-150s. Dakota and Ric were here and called the nurse who took a while to come in. She said she would call the doctor This usually takes a long time, especially at night, so they called Alexx who hopped in a cab and came right over.
Thankfully it wasn’t anything serious. They did an Ekg which showed sinus tachycardia-meaning a regular rhythm, just fast. Alexx had them check labs to make sure my hemoglobin hadn’t dropped and increase the rate of the IV fluid since I was likely a bit dehydrated since they stopped the TPN. My heart rate improved to low 100s by the end of the night.
Alexx slept over and noticed that I was feeling down. She decided to bend the rules a bit and climbed into bed next to me (after a lot of purell and a new gown). It felt good cuddling with her and experiencing closeness. We talked about her childhood and listened to lullabies and songs from musicals that I used to sing to her when she was a little girl. We held hands, laughed and cried. It was a very special evening.
Today was quiet. I sat in the chair and did PT. We played cards and Rummi-Kube. I haven’t had the strength or attention span to play games in weeks so that seems to be an improvement.
My numbers are good. Albumin is slowly improving despite stopping the TPN. My liver enzymes/LDH improved. I drank an entire can of Ensure and my tummy tolerated it with out issue.
My repeat fungal cultures are negative thus far. I’m tolerating the Amphotericin without issues–my kidneys and electrolytes are good.
And the best part of today…..Michelle came! We have been friends since we were 9 years old, that’s 50 years of friendship!
April 27th, Day +20
Last night was quiet other than issues with my Foley catheter. My numbers continue to improve. I tolerated one can of ensure yesterday without issue. Today my goal is for 1.5-2 cans of ensure. The fungal culture from Friday night came back. It’s a fungus called Candida krusei, fairly common. And the good thing is that it’s sensitive to a medication called Voriconazole, which comes in oral formulations. The doctors may try to switch me to the anti-fungal pills tomorrow. So hooray for less IV medications!
I am requiring less platelet transfusions so it looks like they are finally starting to engraft.
The doctors told Ric that medically I am stabilizing and soon the focus will be shifting away from medical care and more towards rehab and physical therapy. We may be able to fly home in the next 10-14 days. Not getting my hopes up but that would be amazing. I’m really worried about getting on a 12 hr flight. I’m sad, frustrated, and scared that I will likely be going home without the ability to walk. I really didn’t anticipate that. Hopefully over the next 1-2 weeks I can get strong enough to transfer from the bed to the wheelchair.
Linda, my wonderful and kind physical therapist. She gave my family a list of exercises to do with me so I can work out every few hours.
That’s all for now. Hopefully going forward it will be nothing but good news. Today is one day closer til I get to come home to New York!!!!