May 12, 2016
I once again dropped Em off at school and caught the train into the city. Den has a very full schedule to day:
- 9AM – Occupational Therapy
- 10AM – Physical Therapy
- 11AM – Nurse Education
- 2PM – Speech
- 330PM – Occupational Therapy
When I arrived, Den was just starting to get dressed. He shocked me when he finished getting dressed and stood up from the bed on his own, with out assistance! Den’s therapists had been told that I was coming today, so they tailored his morning to work with us both on moving him around and getting us both ready to bring him home in a few weeks. Our first stop was OT, we worked on “tub transfers”. This is where Den gets in and out of a bathtub with little or no assistance. He can only take showers, but we don’t have a walk in shower at home, so the tub at RIC is perfect to get him acclimated. Then we headed to PT. We worked on getting Den in and out of bed with my assistance and sitting and standing in a low chair. Later he had to walk across very low obstacles (yard sticks placed on the floor). Finally, before I left, I had MY first test. Mark, Den’s nurse today, had me do Den’s dressing change…with no assistance. He simply watched to make sure I was doing everything correctly. He told me I had passed and only needed one more nurse to sign off before I could do his changes with out supervision!
Em was happy to see me when she got out of school. I was just walking up to the school when she came out. We had a nice evening together and called to say good night to Den before we all turned in for the night. Den’s weight is 228…he is gaining muscle now.
May 13, 2016
Den didn’t sleep well last night. He said he was up a lot. He had his usual schedule….2 OT sessions, 1 PT and speech today.
Roberta and her daughter (who is also Den’s dentist) came by to see Den. He had been having trouble with his denture since he started to lose weight in November. Dr. Therese surprised Den by bringing all of her equipment to reline his denture and give him a better fit! He was so happy he could not contain himself! One of Den’s OT sessions had all the participants playing BINGO! Den said he won 4 times, but only took 2 prizes (one for me and one for Em).
I got a call from Becky, the research nurse for the study. She gave me the first check in appointment for Den. The date she gave me was very close to Den’s estimated discharge date and I asked if it would be a problem. She told me to call if Den was not discharged by the day before…then she could reschedule. At the appointment Den would have the following…..6 minute walk, Labs, chest x-ray, echo cardiogram, and evaluation from the VAD team.
When I talked to Den in the evening, he told me that he had an argument with one of the nurses. He had called and asked for help to get to bed (he was exhausted) and waited almost 2 hours before anyone came to help him. He ended up moving himself since he was falling asleep in his chair and was afraid he would fall out of it.
Em and I went shopping when she got out of school. We went to Cabella’s to see if we could find a vest or shirt that would work better than the ill fitting harness that comes with all of Den’s LVAD. We found two that we thought might work.
May 14, 2016
Em and I had arranged to spend the night in Den’s room. We brought our air mattress, the laptop and some movies. Den still had therapy sessions and most were in the morning. Em and I arrived around 1PM and went to work making the room livable for the night. We showed Den the vests we had found and he wanted to try one on right away. He was sick of the harness and consolidated bag…both had issues he could not resolve. Den decided to try on the olive green vest we had found. He loved it so much that he said he would never take it off! He even wanted to sleep in it that night. We spent the night talking and watching movies. Em ended up having the entire air mattress to herself as Den and I cuddled up on his bed.
May 15, 2016
Today is Sunday and Den has no scheduled appointments today. I was allowed to do Den’s dressing change again and another nurse signed off that I was proficient! One hurdle cleared! Since he didn’t have any therapy sessions scheduled, Den decided to do some laps of the floor. He did 4 full laps and then did all of his upper body exercise. Den decided to wear the tan fishing vest that Em and I had found. He likes how it feels, but I need to make a few small modifications to accommodate his controller.
Em and I headed for home late in the day, we both wanted to spend as much time with Den as possible. (Em only got to see him on the weekends at this point.)