My Mom had a cardiologist appointment on 5/31. I offered to go with her and my Dad to help them with her wheelchair and oxygen tanks and whatever else they would need. We showed up at the doctor's office and Uncle Mark was there. He wanted to be able to talk to the doctor about how Grammy was doing. She wasn't doing great - not breathing well, hadn't been eating anything really for a couple of weeks and hadn't been drinking anything for 3 days. She had had fluid on her lungs and her heart, and had had the fluid drained from her lungs a few weeks back. They were monitoring the fluid on her heart every couple of weeks to see if/when they needed to do something about it.
After having tests run, the cardiologist said that there was more fluid on the heart and that it needed to be drained. There were two options - to put a catheter in to drain it, but that it was just a temporary fix and a one time deal. The other option was to go in surgically and cut a window in her pericardium to drain into her stomach, so if the fluid came back, it would just continue to drain and not put a strain on her heart or body. After much discussion, Grammy (and the rest of us) decided to have the surgery. The doctor immediately called to get a surgery time set up for that late afternoon. Mark headed back to work while Grandad and I took Grammy to the Virginia Hospital Center in Arlington.
We got checked in, wheeled up to the Cardiac ICU and put in a room. The nurses (CNA's, RN's and Nurse Practitioners) were super kind and knowledgeable. The surgeon came in and spoke with us. Grammy was wheeled out for surgery and then brought right back in - an emergency came in and the operating room was busy. We waited for a little bit and then she was wheeled out again.
Mark arrived while we were waiting. Surgery went well and Grammy was brought into a recovery area. After a while, we were allowed to go back and see her. She looked remarkably better than she had hours ago. They were concerned that she might have needed to remain on the ventilator they were putting her on for surgery, but by the time we got back there, she was off of it, sitting up and looking well! We hung out in the recovery area for a while, as they were checking all of her monitors and keeping an eye on her. She was breathing better and not as labored as before the surgery. The surgeon had removed 1100cc's of fluid from her heart.
We were asked to leave the recovery area because they were about to have to do surgery there for another patient who wasn't doing well. We went back to the room and I decided to spend the night there. Grammy was wheeled back in and Dan drove down to bring the car for me, as well as an overnight bag (couldn't sleep without my blankie) and rode home with Grandad. I spent the night and was able to help Grammy in the middle of the night with the tons of staff that came in and out all night long - answering questions, clarifying things, helping her hear them when she was groggy and couldn't quite hear (she hadn't brought her hearing aids). I'm glad I spent the night, but it was exhausting for her and I, not getting much sleep.
I headed home sometime after Grandad got there in the morning so I could get some sleep. Dan drove down with Kylie that evening and had her visit for a while. He took the above pic :) Kylie combed Grammy's hair and had fun lightly rubbing her arm. They had some good laughs and a nice visit.
Because she was doing so well, we didn't have anyone spend the night. I woke up to Grandad calling me at 6:20am the following morning saying that he had just gotten a call from Grammy saying that her lips were super dry (because of the oxygen), she didn't know where her glasses were and she didn't know what was going on. I popped out of bed, washed my face and drove down to see her. I was there by 7am and walked in to her Cardiac ICU room to find that she had been moved to another floor and room. A nurse walked me to her new room and I walked in to her being very confused and upset.
I jumped to conclusions quickly walking in thinking that these nurses weren't very good and was quickly proven incorrect. Sometime over the course of the night, whether by being in the hospital or being on some sort of medication that did not react well in her, she became very disoriented and was experiencing hospital delirium. She wanted to leave, asked me about people who didn't exist, kept trying to get out of bed, was agitated and aggravated and was hard to handle by yourself.
I explained to the main nurse that this wasn't like her at all. Then I explained to the nice doctor after he had come in, as well. For the next few days we battled with Grammy mentally (and sometimes physically) while she battled physically to get well. Mark, Brian, Dan and I all took turns spending the night in the hospital with her. We made my Dad go home and sleep in his bed at night, so he could come back and be refreshed to take care of her during the day. On the nights that I didn't spend the night, I arrived at the hospital by 6:30am to help relieve whoever was spending the night, until Grandad came in at 10:30am. I'd stay with him until I had to head home to pick up Kylie from the bus. They assigned a "sitter" nurse to be in her room 24 hours a day to help keep her calm and to keep her in bed. The nurses, doctors and Respiratory Therapists were amazing and super helpful. Dr. Hollis, Siobhan, Edward, Jessica and Jacque, Adrienne and Annie were my favorites.
Sandie, Mary and Vickie all wanted to come visit Grammy at the hospital, but because of her delirium, we had said it wasn't quite a good time. I kept in touch with them and promised I would let them know when a good time to visit would be. Grammy was in a calmer state on June 7th, so Mary was able to come visit for an hour or so. It was a good visit. Grandad and I were there, as well, and had a nice time catching up with Mary while she regaled Grammy with stories of her grandchildren and what they had been up to. I am thankful that Mary was able to visit.
Her breathing improved with the 1100 cc's taken out of her pericardium around her heart, but her kidneys shut down around the surgery and took their sweet time in starting back up. Fluid filled up in her legs and started filling back up in her lungs. It was a battle to have fluid drain, to help her numbers even out. On June 7th, her breathing became more and more labored. They rose her O2 from 2 liters to 12 liters to help her more and put her on a face mask instead of the nasal cannula. They decided to move Grammy to the ICU in the afternoon to help with her breathing more and placed her on a bi-pap machine.
Mark was slated to spend the night there that night and arrived down to the hospital while my Dad was still there. My Dad headed home. A team of doctors came in to talk to Mark about how Grammy was doing - that the fluid was building back up in her lungs significantly, thus making it difficult for her to breathe. Their options were to either drain the fluid from her lungs (which would be a risky procedure in her medically fragile state), intubate her or make her comfortable with morphine until she passed away. Earlier in the day, Grandad had spoken with Grammy and the staff at the hospital about her wishes, should they need to know. She confirmed that she still wanted the DNR (do not resuscitate) order and no extenuating procedures to keep her alive, if it came to that. Mark continued to text us out as to what we wanted to do. We all agreed that we didn't want to put her through the risky procedure of draining the fluid from her lungs and we knew she did not want to be intubated - thus leaving us the only choice of making her comfortable. A few hours later, the doctors came back to speak with Mark and inform him that it would be a matter of hours before she passed away.
Dan and I and Brian and Sarah all met at my Dad's house around 11pm that night (as soon as we could drive there) and headed down to the hospital. Heather wanted to stay home with the kids to bring them in the next morning early and offered to bring my kids, too. Although the ICU normally allows only 2 visitors at a time, they allowed us, under the circumstances, to all be together in her room with her. She was still on the bi-pap machine and did open her eyes to see us. Mostly she just laid with her eyes closed and would open them whenever we would talk to her or stroke her arm.
Sometime in the middle of the night, Brian, Sarah and Dan headed home. Brian had spent the night before there and was still exhausted from that and Dan wanted to get home to our kids. Grandad, Mark and I stayed there in the room with Grammy. We nodded off some and kept checking on her. Dan and Heather rallied the troops early in the morning and drove down all together to see Grammy one last time. Hannah left early from Charlottesville to come home, too. Grammy passed away right as they were getting up to her room, surrounded by her family.
We said our goodbyes, gathered everyone and met up at Duck Donuts for a breakfast treat - just like Grammy would have wanted. The kids were joking that everyone should get two donuts - because Grammy would have wanted that :) It was nice to be together and able to be together for dinner that night, as well.
Flowers from Sandie to Grammy in the hospital
The passage I read early that morning from Psalm 90
The sunrise out her ICU window
Heather, Dan and the kiddos driving down to the hospital
Breakfast at Duck Donuts
Delicious
So nice
