After 10 months of what we thought was good healing progress things went bad fast.

He had begun physical therapy, had been fitted with a new chair and was about to start more occupational therapy. He had some serious right side leg contractures we were working on with a knee brace and special therapeutic boots.

Then on the evening of January 22nd I noticed he had what I thought was soiling under him. No big deal, shit literally happens with a quadriplegic. I began the clean up process but when I turned him his bum was clean. Then I noticed the stuff was thick and pink with blood clots. It was pouring out of a massive opening at the base of his scrotum. And it was still pouring out.

It appears there was a massive abscess forming under his surgery site beneath the skin. There was no signs. No swelling, no redness, temperature or open wounds. It left 2 massive caverns. On laterally and one straight in internally. I had never experienced anything like it. They were deep and long. We had now been set back a year. He would be bed bound again for months.

I used a big syringe and washed it out. So much stuff came out it filled a large chux. I was so traumatized by what I had to do as well as what we would be facing in the coming months. Despair punched me in the chest. Colin fell into a depression.

We called his GP the next day and she redirected us to the plastic surgeon. Made an appointment for January 29. We had to provide medical gurney transportation ourselves. $350. Dr. scheduled surgery for February 3. He would be in the hospital for 2 weeks on the same air/sand bed as before.

We had to provide gurney transportation to the hospital.  His surgery went well and we managed to make it through the 2 weeks in the hospital. The surgeon made him stay an extra 2 days since the nurses were not creating a vacuum on his drain bulbs to drain the surgery site. Finally came discharge date. And then it went.

The hospital kept telling us they would contact medical transport to take him home. He was discharged the 18th.  The morning of the 19th the staff still had not contacted transportation so I did. They took him home with resulting open sores after placing him in the ambulance without checking for areas of rubbing. We had to pay for this trip as well. Now over $1000 just in medical transportation.

No home care nurse was assigned. Stitches and staples go from the front of his pelvis on the left side right along where his thigh attaches to the trunk and around the back of his left buttocks.  Stitches don’t come out until the end of 5 weeks. The plastic surgeon is so awesome. He came to the house himself to remove them so we wouldn’t have to pay for transport again.

At 6 weeks he is supposed to have his pump filled. We call the pain doctor and told them there is no way he will be able to get into his wheelchair for that long. They said we have to bring him on a gurney. We told them we can’t afford another trip as we have had to do 3 already. They had no fucks to give. His pain doctor is a fucktard.

He could die if that pump dries up. They don’t care. Insurance won’t pay. They don’t care. So fuck them. If I have to pay again how am I supposed to pay their bill?  They act like we are made of money. This pump has been such a huge disappointment. It has not provided what they claimed. It’s due to be replaced in a couple years. I’m hoping Colin decides not to do it. I hate that office and the doctor so much. They are callous mean people. Nobody likes that.

I have tried to contact Medi-Cal to see if they will cover transportation but what a difficult overwhelming task that is. No matter what number you call you are directed to the main county office number. I was 32nd in queue, 25 minutes on hold. Guy says I need to speak with someone else. Asks if he can transfer me and I say yes. Call cut off.  I tried a different number got the same call center.  Then it is 37th in queue, 35 minute wait time. Like I have nothing more important to do than wait. Finally got someone in ABD services (Aged, Blind and Disabled, who you cannot call directly).  She said we have to call around and find someone who accepts Medi-Cal. Great.  Called the first service and asked who accepts Medi-cal for non emergency gurney transport. Only one in Fresno. American Ambulance. Ok.

Call American Ambulance.  Talked to AA Medi-Cal billing person. She said it is covered and to call dispatch. Called dispatch who says to call Medi-Cal and the insurance. They need some confirmation from someone.  Good thing this is the only game in town for Medi-Cal non emergency transport. Called AA billing back. It has now been 4 hours since my first call. AA back and forth. 4 different people. Finally get the supervisor of scheduling.  He is looking for a record of going to Tollhouse even after I let them know this is the first time we have had to do this. The want the insurance approval after I told them insurance will not pay, it is through Medi-Cal.  Then I’m told to call Medi-Cal even after I told them I had already spoken with Medi-Cal and they told me to call any provider that accepts Medi-Cal. Fuck this.

Colin called his dad and asked him to cover it. Thankfully he said yes so we can contact the nice guys who have taken him before. Fuck American Ambulance.

Or so we thought. After contacting the nice guys who transported him before his dad decided Colin should use his SSI benefits to pay again. Since his father spends $200 per month to visit he feels the request is inappropriate . So we will be paying again. I don’t have to time or energy to deal with it anymore. Fuck his asshole father.

Some good news is his new chair has been approved and expected around March 30. It has a custom molded seat that the physical therapist said was a good thing. Then the plastic surgeon told us it was a very bad thing.

FFS….

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.