Again, I find myself neglecting this page and my duty/responsibility/desire to post here. If you read my last post you know that my wife and I welcomed our second child into our lives about a year ago. Having two kids if a huge change compared to having one, you’d think, “well we did it once it should be a piece of cake, right?” wrong. Having a 6 year old and a new born is a level of nuts I didn’t think possible. TK is frustrated with everything that has to happen with #2 because it doesn’t involve her. If #2 needs to go to the doctor for a check up, TK is mad because the doctor isn’t paying attention to her, if #2 gets a shot, TK wants one to (until the actual shot arrives, then it’s all tears).
Add to this, my father’s health. In March of last year my dad got sick, his kidneys weren’t working correctly and he was retaining water in his legs. It was either his heart starting to shut down that caused his kidneys to stop working or his kidneys not working that caused his heart st start failing, it depends on whether you were talking to the heart or kidney specialist. He spent a week and a half in the hospital and they got 7 gallons of fluid out of him in that time, my sister did the math and it was about 60 lbs. of weight they got off of him. He came home and was given instructions to follow, cut out the salt, cut out the soda, start moving more, and start eating better. To his credit, he did almost all of those things.
He started small with exercising, he would walk from his front door to the end of the block, about 3 houses, and back home. Once he felt stronger and more confident he started walking to the corner and back then a couple of houses down and back home. After a month he was walking around the block, and a few weeks later it was two blocks. He was losing weight , he was eating better, he was moving more, but he didnt cut out the pop, he cut back but not out. But he was doing better so that was good.
Then, in August, something changed, he started losing his balance, he was shaky and forgetful. After a day of this my mom decided he needs to go to the hospital. He had an infection, he was still retaining water in his legs and this becomes a breeding ground for bacteria, and that caused the infection. the doctors looked at all of this and decided that even though he had made good changed and good progress, it wasn’t enough and his kidneys were still not working at their full capacity, it was time for him to go on dialysis.
If you or a family member is on dialysis you know that the place you go to have it done can be a very depressing place. My dad’s doctor, unbeknownst to my dad, put him on a low level antidepressant, my mom just put it into his daily pill box and didn’t tell him what it was or what it was for. He went to the dialysis center three days a week for about 5 hours a day. My mom took him for the first month but after that it got difficult for her to get in and out of the car and help him get in and out of the car, so my younger sister and I were asked to help out. I would drop TK off at school at 8 am and then head to my parent’s house with #2. #2 and I would hang out for an hour and then I would load him and my dad into the car and head to the dialysis center, I’d help him into the car and help him out, the dialysis mad his legs hurt and feel weak. when he was done, my sister would pick him up and take him back home.
After a couple of weeks in dialysis dad got sick again, same symptoms as before, he would lose his balance and fall down, he’d get shaky, he was loopy and forgetful. After a day of this my mom took him to the hospital again, it was another infection. He was able to get his dialysis in the hospital and after a week he was better and out of the hospital and back home. We went back to our usual schedule. After a week or so, my dad noticed that his legs were “leaking”. He would get, what looked like, a small blister on his shin or calf, after a day or two the “blister” would pop and fluid would come out, and fluid would just keep coming out of it. Eventually a sore would develop and he’d try and bandage it up, but the fluid would soak the bandage making the sore worse. This led to another infection and another trip to the hospital.
The doctors got him fixed up again and after a week in the hospital he was sent home. This time he was given a home wound care nurse who would come every other day and a physical therapist that came twice a week. The PT got him waling better and got his legs stronger, and the wound care nurse got his legs to heal up. At one point we celebrated the fact that he was able to get into my car with no help for the first time since I started driving him to dialysis, that was a good day. But a couple of weeks later, the same symptoms came back, and he was back in the hospital.
This was the pattern from August until February. He would feel good, he would fall, he would get shaky, he’d get loopy and forgetful, he would go to the hospital, he’d get better, he’d come out, he’d feel good. In late December the sores on his legs came back and his days would get longer, he would go to dialysis at 9am, and my uncle would pick him up (my sister had to go back to work so dad, begrudgingly, asked his brother to help) around 2pm and take him to the wound care specialist at the hospital who would clean his legs and change his bandages and then my uncle would take him home around 5pm. But other than that change the pattern continued.
In February he got sick again, is seemed different, worse, than before. We had to call an ambulance because his legs had gotten so weak we didn’t think that my older sister and I would be able to get him out to one of our cars.
After a week in the hospital, he wasn’t showing any signs of getting better. He had stopped eating and was becoming incoherent. One day he pulled out his feeding tube and IV and pulled all of the monitoring cables off and refused to let the nurses put them back on until my mom get there and calmed him down. The next day my mom called my sisters and I together and discussed what she wanted to do. She said that he wanted to die and she was going to let him. My older sister was not having it, she said that the doctors hadn’t done anything different to treat this and until they did she didn’t want to let him go, my younger sister agreed. I barely got a word in edgewise, but I felt that the infection, which made him loopy, and the fact that he went off his antidepressants cold turkey were not a good combination for my dad, mentally, and that I didn’t want to give up on him yet. My mom listened to us and the next day told the doctors that she wanted them to try and treat this more aggressively. That afternoon they tried a different antibiotic than they were currently using, one that treated a broader spectrum of viruses.
The next morning he seemed to be doing better, he was more lucid, he didn’t fight the feeding tube, he seemed to respond to us better, and seemed more alert. I had spent the last few days bouncing between my kids at home and the hospital, I would talk to whoever was at the hospital once #2 went down for his nap, get the update and the plan for the day, and then once TW got home from work I would head to the hospital and stay until 10 or 11pm then head home and repeat the process again the next day.
Two days after starting the new antibiotics I was at home, I had just put #2 down for his nap, and was going to make a sandwich when my phone rang. It was my older sister, my younger sister took my mom home at about 8 that morning, she went back to the hospital and at about 10:45, right before I put #2 down for a nap, my dad’s blood pressure dropped, it was something like 50 over 20. The ICU crash team was sent to his room and my younger sister called my older sister because my older sister was the main decision maker after my mom and my mom was not answering the phone because she finally got to sleep after almost 48 hours of on and off dozing at the hospital with my dad. OS told mt to go to mom’s house an wake her up, don’t bother calling, just go and get her and bring her to the hospital, things weren’t looking good.
I woke #2 up and drove to my mom’s house. I woke her up and told her that we needed to get to the hospital now. While she was getting ready I got a call from TW, she was getting ready to choose our health benefits and wanted my input about a couple of things. I don’t know what I sounded like but it must not have been good, I filled her in on what was happening, she said she would leave work and meet me at the hospital. It was flu season and the hospital wouldn’t allow children under 12 in to see patients, so I couldn’t take #2 up to my dad’s room.
I got my mom loaded into the car and got the hospital, I called YS en route, and told her that she would have to come to the main entrance and pick up mom and that I would be up later after TW came to get #2. I got the hospital a short time later and waited for TW to get there. 15 minutes later TW was in the lot and I was heading to dad’s room. The ICU nurses said that they were going to stay in the room with us until they had a bed ready in the actual ICU, until then they had more authority that the standard nurses when it comes to medications they can give. We all sat in the room and stared making plans, we needed to get my little brother home from Florida as soon as possible. YS and I searched for the cheapest flights and OS and mom talked to the doctors and nurses. once we found a flight, mom bought his ticket, he’d arrive at 11:45 that evening.
When his bed in the ICU was ready we were told to head to the ICU floor and wait in the family area until the nurses came to get us, it was going to take them a bit to get things set up and to bring the ICU nurse up to speed. they said that once they were don they would come get us. We sat there in the waiting area and tried to stay positive, we tried to keep the atmosphere light, but we all knew that things were going to get serious soon.
Once he was in his room we met with the nurse and planned our next steps. I was going to take OS home, she was gong to leave her car there in case mom needed it, YS was going to pick up LB at the airport and drive him straight to the hospital, mom was going to stay at the hospital, and after dropping OS at home I was going to go home and fill TW in on what had happened, and let her know that we had decided to let dad go. Once LB was there we were going to pull the feeding tube out, stop the meds keeping up his blood pressure, and make him as comfortable as possible until the end.
The next morning that is what we did, I had breakfast with my wife and kids and then headed to the hospital to meet up with my family. My older sister has always been the “smart” on. She was a straight A student from birth, but that morning she said something that made my jaw drop right before bursting out in laughter. The ICU nurse explained what was going to happen, he was going to pull the feeding tube out and stop his medication, he would be able to give morphine every 2 to 3 hours as needed. Mt sister waited until after he had left and asked us when they were going to give him the shot that let him die. Like I said, my jaw dropped, we all looked at her like she had lobsters crawling out of her ears, and then we all laughed at her while explaining to her that it didn’t work that way. It was now a waiting game, we would have to wait until his body quit.
We spent hours in the ICU room, talking, reminiscing, waiting, listening to music, waiting. Until the ICU nurse, whose name escapes me but whose kindness has stayed with me since that day, told us that dad would have to be moved to a hospice room. When we got to the new room and got settled in, a couple of cousins and aunts came to visit. We all sat together and talked and waited. At the end of the day, after everyone had left, we made our plan for the rest of the night. OS and YS were going to stay with dad, I was going to take mom and LB to mom and dad’s house so they could get some sleep, and I was going to head back home and update TW.
The next morning, I was woken up by TW’s phone going off. I left my phone on vibrate the night before and didn’t hear it go off when YS called. She called TW and she put the call on speaker and there, lying in bed with my wife and kids on a sunny Sunday morning, we all found out that my dad passed away a half hour before they called us.