Jump for Joy - 5/24/22

OK, this might not be a photo of us, but it is the elation of the day. John's stay in the ICU is over. The care and attention were amazing on 2C but we are thrilled that he has graduated back to 4E (BMT/Apheresis Unit).  

I'll keep this short but John is back on the road to recovery, but he has a much longer recovery ahead with the setbacks. He is extremely weak and unable to stand, walk, use his phone, feed himself as of today, but he is getting there. 

It was the greatest sight to see him sitting in a chair when I walked in this morning. He hasn't been able to be out of bed in a week and a half. He needs a couple therapists and a lift to get him there, but I am certain with the way they are working with him, he'll be assisting soon. 

He still has moments of the neuro toxicity but it seems to be making improvements each day. He struggles with his phone, but he is eager to talk and communicate so feel free to call or text. He was thrilled to have his Fire Stick connected and eager to get back to Ozark and his favorite shows. I try to spend most of my time between the hospital and the new house from 8:00 - 8:00. I am just working from there when I can so I will help him answer the phone and get texts. He can't dial yet and if he is in therapy or dialysis he can't have his phone, but I will help him call you back. He doesn't have strength to talk for long, but the voice of dear friends has really lifted his spirits. He isn't wanting video calls right now but a friendly voice is great medicine.

The blood products continue flowing through the door, but is it at a lower frequency. Dialysis is remaining daily to help clean out the toxicity. The feeding tube still keeps him nourished, but he has started taking a few bites of solid food. We are treating food like medicine right now, a necessary evil to getting stronger and moving his recovery along. Anyone who followed him last transplant may remember that he is at the point where most food and liquids are toxic tasting. We also mentioned that he had ice therapy before, during and after transplant to help with mouth sores. It did help but with a vent tube down your throat for a week, it got raw.  As his doctors all keep saying: baby steps, but any step is a good one right now.

They also started talking about next steps. He will most likely be discharged this weekend or as soon as he is strong enough for a rehab hospital. This is needed to help him regain his mobility and strength. It is a bit more tricky because of the neutropenic precautions (sterile needs) and his dialysis, but the Mayo team is working on that for me. Our goal is to start training for home hemo dialysis the first of July. A minor setback from our May 30th plan, but we'll take it. 

And our move is this weekend so I know I am a little slower to respond, but know all of the thoughts, messages and love are appreciated.

Thank you, Julia