He left the hospital after 2 months. Still had the trach and the wound vac. Nurses came to the house 3x each week to change the wound dressings.
After the first week when the RN took the packing out his wound was worse. It was bigger, deeper and looked terrible. The nurse just shrugged and repacked it.
A month home on Tuesday morning 3/5 he began acting again confused, and incoherent . I was getting him ready to take him to the ER when he stopped breathing. I shook him, yelled at him, slapped his face while dialing 911. After about 50 seconds he took a breath and had shallow rapid breaths following. It took the emergency crew (FD and Ambulance) about 15 minutes to get there. They could not get a pulse at first. Put him on oxygen and his SpO2 was low.
They took the long way to the hospital to pick up a crew member who could do an emergency procedure. Once n the ER he had low BP, high HR, fever. They got him on antibiotics, put in a central line, back on the ventilator and into ICU. They were saying sepsis again, UTI, fluid on his hip. They took swabs of urine, wound, lungs, blood. He had some bacteria in his lung, some pneumonia but none in his urine or blood.
Finally after 2 weeks the wound care nurse told us it was his wound and his bone was infected. She was recommending a plastic surgeon get rid of the infected bone and sew a muscle flap over his wound. He was doing well in ICU, was taken off the ventilator within a few days. He was moved to the 5th floor and had surgery scheduled for Saturday morning the 16th of March. Friday after they got him on a special sand bed he started acting confused again. Couldn’t answer things correctly. Then by Friday afternoon his eyes rolled up and he was in a vegetative state. No responses. They did a CT and an EEG saying he was having seizures. The ID (Infectious Disease) doctor and wound care nurses said he was reacting to the toxins in his blood from the infection. He was put back on the ventilator.
Surgery went well. He was still like a zombie until Saturday evening. By Sunday morning he was more himself than he had been in weeks. He was taken off the ventilator by Monday. He was stuck in ICU for a few more days while they waited for a post surgery room to open up.
Once on the floor he continued to improve. We had 2 weeks to get through until discharge. The last day of Winter, Sassy was killed by a neighbor dog. Got her by the throat. She had helped Colin through all these years. He didn’t get to say goodbye.
We survived the hospital for 2 more weeks. The day before discharge we were told he would be going home by ambulance, he could not sit for 2 more weeks and he had to come back down by ambulance to see the surgeon the first week back, we did all that. The surgeon had ordered a special bed for him but the insurance denied it. The surgeon also ordered a new seat cushion for his chair. No sign of that either.
2 weeks home his hospital bed broke. Some bearing snapped off and the head no longer raises. We need to have him sit up to eat. We have to use 2 different wedges but it takes 2 people to get him on them. I called the insurance and they gave me a list of approved medical equipment vendors. But I had to call each one to see if they supplied hospital beds. 4 did out of a 2 page list. 2 were direct pay (so why on the approved list?). The other 2 were backordered with no delivery time available. So he will have to be on his sling to be raised, lower onto a wedge using the hoyer lift. The insurance provides no assistance at all. Just phone numbers to call. What happens to people who are on their own?
I sent an appeal to the insurance for the bed ordered by the surgeon but we’d have to come up with $6K. I doubt they will approve it anyway.
To swap him on the wedges we use the sling and hoyer lift. We tied the bottom of the sling to the foot of the bed. We lift his shoulders with the hoyer and one person can do it alone.
He has been getting up, playing his game and his surgery site had looked good. 4/17 the home care RN removed the stitches and sutures. Sutures had been in too long and some skin had grown around them. So there was some bleeding. We cleaned him up, bandaged him and he was still able to get in his chair.
4/18 morning we began light therapy on his surgery site and dressed the area well each time he got in his chair.And we had to go to town for Dr. Salazar for his pump. This opened up 2 small areas of skin and he had to remain in bed Friday. It is a small setback but a fucking set back nonetheless. I try to go interact but he has resigned himself to being in bed and ends up sleeping the day away. I wish I had better solutions.
By early May he was up regularly. IV antibiotics were done and the pic line was out. Surgery site looked good. Still no bed solution. His alternating pressure mattress began having troubles so we coughed up $600 to get a replacement. The insurance would not be helping out anytime soon. We also began the process of trying to get him a standing chair. They are durable and expensive. We fully expect the insurance to decline the request and we will have to appeal that as well. No doubt it will be next year before his chair is replaced.
To add insult to injury Social Security asked him to repay $470 for December 2018 since he was in the hospital for the whole month. We also forgot about a dentist appointment and have to pay $50 for missing. It just keeps getting better.