When I last posted, I was talking about the lead up to Surgery.
While we waited for a date for surgery Derek got prepared by getting his fitness levels back to where they were pre-Sepsis. He had lost a lot of fitness while ill, so it took a while, but he managed it. He was fit, well, feeling good, and keen to get the surgery out of the way.
We finally got word while I was at work one day. I received a phone call from Southern Cross Hospital, to say that Derek’s notes had been sent to them to perform the surgery.
I thought it would be great going through a Private Hospital for the surgery and paid for by the Public system. They gave us a date for Derek to go in for a Pre-Op appointment, where everything would be discussed, including what to expect pre-surgery, and post-surgery.
The following Monday I received a call from Derek. Southern Cross had phoned him to cancel his appointment. They were no longer doing the surgery, and had handed his file back to the Public Hospital.
When I asked him what their excuse was, it was because he was on Warfarin and the hematologist wanted him to have a Hepron Infusion during surgery, and they didn’t have the equipment, or the drugs to do it.
I admit, I was upset. We had waited since June for a date, now it was cancelled.
Later that week we got a call from the Public Hospital. They were scheduling the surgery, and he was to go to a pre-op appointment for surgery in about with them in three weeks. Great, it was still happening.
We went to the Appointment the following week. We were actually excited about the surgery. We wanted the cancer gone. The sooner he had surgery, the sooner he would be able to recover, and get on with his life.
At the appointment we discussed his antiphospholipid syndrome what was going to happen as far as Warfarin management was concerned.
There wasn’t a decision on exactly when they would start the Hepron infusion, whether the morning of surgery, or the day before so we were told to wait, and we would be contacted.
Derek was to take his last dose of Warfarin on Sunday evening, then just sit and wait.
The Monday before Surgery Derek received a call from the Hospital confirming he would be admitted on the Thursday afternoon, to be put on a Hepron infusion and monitored before surgery. He also had to have an INR test to ensure his INR was <1.5 as this was considered the safe margin for surgery.
We took the Thursday and Friday off work, along with 4 more weeks. We both took 2 weeks sick leave (so he could recover) and 2 weeks Annual Leave, so we could start the slow process of getting our lives back to normal.
Thursday 28 Sep 2012, just after lunch, we packed the car with his hospital bag and drove to the Hospital. A little apprehensive, and little excited. Talking the whole way about his recovery, planning what we would do to get him back to fitness. Planning his walking around the house, progressing to walking to the end of the street, to walking to the Supermarket (15 mins walk there and back). We worked on him being able to do that walk by the end of the second week at the latest. Remembering that this was open abdominal surgery.
We were also a little apprehensive because he had Sepsis last time, so I was acutely aware I had to keep an eye on him when he left Hospital.
We arrived at the Hospital, and they admitted him to a room. They put him in a 2 man pod, but both beds were vacant. I asked if he could have the bed by the window as he would then have something to look at while he was stuck in bed. They were more than happy to oblige.
A nurse took bloods, and gave him an IV line. They didn’t want to start the Hepron until they had taken his INR. An hour later the results were through, it was 1.2. Definitely low enough to have surgery without a risk of bleeding (which was their main concern).
A nurse came in with an Infusion drip, and connected him to his first Hepron pump. They would be checking his blood every few hours to make sure they weren’t giving him too much.
Late in the afternoon one of the Dr’s performing the surgery came around. He had a group of trainee Dr’s with him. We discussed the surgery, and the fact that he would be performing it along with the specialist. I asked him how many of these surgery’s he had done. He told me that they did this surgery every week at the Hospital. I then asked him again how many HE had done. One of the junior trainees also emphasized my desire to know HIS track record, not the Hospitals. He seemed to take offence at the question. It turned out he had only performed this surgery 40 times and he had only just passed his Boards in the last 6 months. He wasn’t happy with being challenged on his skill level by a simple spouse. Tough luck.
Once he was settled in, and I was happy, I left him to go home. He was safe in Hospital and we both needed a good nights sleep, to be fresh and fit for surgery tomorrow.
Friday 29 Sep. In the morning I woke bright and early. I txt Derek to see how his night went. He had been woken regularly for blood tests but was ok.
I was nervous. I wanted to get the kids off to school so I could get into the Hospital.
I got in the car to drive with the morning Peak traffic (can’t call it rush hour because it is the slowest time of day). Every little thing annoyed me. I ended up behind every slow driver around.
I made it to the Hospital in good time and spent the morning with Derek. He hadn’t had breakfast, and wasn’t allowed Lunch. That was fine. I would go for lunch once he had gone for surgery.
1 pm a nurse came in. She was stressed as they had phoned for Derek to go down to surgery, but nobody had taken a blood test to check his Hepron levels. They took the blood, and the orderly came to take Derek to surgery. I walked with him to the lift, said goodbye and left the hospital.
I went and bought coffee and cake and went to work to kill some time. I then left there and went to kill more time with another friend.
4.00 pm I was back at the Hospital. I hadn’t heard anything so I went to the Surgical floor and asked what was happening. I was told that he had been in recovery for a while and would be up in the ward within an hour.
I sat in the waiting area reading for another hour then went up to the ward. I was only there for 10 minutes when a nurse came in to say he was on his way up.
As he came in to his room in his bed I greeted him. He looked very groggy. He could hardly open his eyes. I spent a couple of hours just sitting there keeping him company. He woke for short periods, then slept again. He didn’t feel like eating.
I finally went home, safe in the knowledge that he came through surgery well, and recovery would now begin.
Saturday morning I drove back into the Hospital, hoping to catch the Dr on his rounds to find out how the actual surgery went.
I managed it, and was there when the Dr came in. It was the same Dr that I had upset the previous day. I asked him about the surgery, whether the margins appeared clear, what they thought the long term prognosis would be. I also asked him about Rehab, to make sure I had a fully functioning husband some time in the future. He was very uncomfortable answering any of my questions on that. He gave a few very short answers, told us Derek would be discharged the next day and then left.
That day he was given his first Clexane injection since he had the DVT in 2010. We assumed this was normal. The nurse made sure he knew how to give himself the injection. Derek let her know that he had given himself them for 2 -3 weeks when he had the DVT and he would be fine.
We were then educated on looking after the catheter bag and making sure we knew about getting him out of bed, to recover properly.
Saturday evening Derek had his first walk around. We walked him to the Nurses station and back. He felt good. Not too much pain, not too uncomfortable.
A couple of hours later he took another walk. He was doing well. He was eating, he was drinking. Things were going well.
I stayed later that night, until Derek was ready to go to sleep. I then went home, safe in the knowledge I would be taking him home the next day.
Sunday morning I arrived at the hospital prepared to take Derek home. He felt a little wobbly on his feet. Tired, not great, but he had had surgery, so it wasn’t surprising. I helped him have a shower and get dressed ready for discharge.
The Dr came in, and gave us his discharge notes, and a script for various items. I had his clexane and made sure we have plenty of things on hand. The Continance Nurse came in to discuss what was to happen with his cathater bag when he got home, and that he had contacted the Hutt Valley District Health Nurse as they were required to visit him on Tuesday to check on his progress.
I walked Derek slowly to the lifts, and we went to the car. I put him on a seat in the reception area and went to get the car. He wasn’t walking as I had expected, but again, it was only 44 hours after open abdominal surgery.
Monday 1 Oct
Derek got out of bed, walked around the house for a minute and then sat back in his chair. He wasn’t feeling very well. He was feeling worse than Sunday. We took the day very quietly. Recovery appeared slow, but it was only 3 days since surgery. We would try another walk on the Tuesday.
Tuesday 2 Oct
Derek woke up with a temperature. He was feeling ill. He had gastric pains. Not bad, but definitely uncomfortable. We decided that, given his last experience with Sepsis, I would take him to Hospital to be check out. I was scared that he had Sepsis again, and he shouldn’t have a temperature.
They gave him Ciprofloxin and sent him home. It was explained to him that recovery had it’s ups and downs.
Wednesday 3 Oct
Still had a temperature. He had more gastric pain. We went for a walk to the end of the street to see if movement would make him feel better. He hardly made it. It was very slow, he was very weak, and almost collapsed when we got him back to the chair in the Lounge
Thursday 4 Oct
Derek woke with the temperature again. The gastric pain was worse. He went for a shower and I noticed he had quite a bad rash on his back. It wasn’t on his chest, but was everywhere that he had pressure from laying down. He felt worse than the previous day. I decided it was time to take him to the Dr.
I phoned for an urgent appointment with our Dr who thought he might have had a UTI. He took a sample from the rash which was red, with small white tops. It looked almost like chicken pox, but it wasn’t.
Things were going down hill. Who knew it could, and would, get worse………………………………………