Tuesday, October 11, 2011
For myself and CJ and everyone that knew and loved Victoria.
In December 2007, Victoria got a little pine needle from our Christmas tree stuck in her heel. She didn't notice (diabetic neuropathy) and neither did I for couple days. It spawned an infection that destroyed her left heel. (Details of that can be found here.) When the infection spread to the extent shown in the other blog, her physical and mental state began a very slow, shallow slide. As anyone with chronic illness knows (or knows someone with one), the constant battle is mentally, physically and emotionally draining. The heel caused Victoria to lose a significant amount of mobility which also contributed to her general state.
The months leading up to December 2007 had been somewhat occupied by eye doctors trying to arrest the slide of her eyesight. Again, diabetes was the main culprit here (glaucoma and diabetic retinopathy slowly rob eyesight even though numerous interventions can slow their progress). We went to a resort in the Dells for CJs birthday and that is when the warm, moist air seemed to relieve some of the pain Victoria had started feeling in her hands the previous winter. It was back with a vengeance in the winter of 2007/2008. Rheumatoid arthritis.
Throughout 2008 Victoria fought the heel infection and her declining eyesight. Yet, she continued with her Education for Ministry classes and working with clients in the office. For much of the Spring and early Summer, we were often on an emotional rollercoaster.
CJ was approaching teenager and was doing well in school, had lots of friends and was and is, a happy kid. We kept home as normal as possible.
Because of all the medical appointments and draining nature of the recovery, Victoria's practice suffered some. We didn't see as many clients and that added some stress.
In 2007 I started working for other attorneys to supplement our income. It wasn't much but it helped. As 2008 opened, I had a couple clients that were consistent in their business that helped ours.
2008 was the year of her last big case in the office. It was a custody case where the in the military father was being denied visitation by a mother that moved 20 times in 4 years and kept changing the schools of their ADHD son. Trial was a 2 day affair that meant 20 hour days leading upto, and during for both of us. Although it didn't end after 2 days, we were both exhausted. Sometime in the fall, she had a TIA (a mini-stroke). She recovered after a day or so, but it suggested that years of high blood pressure and diabetes were taking a toll not just on eyes but other things as well.
Let me give you a number: creatin is a measure of kidney function. Everyone loses some function as they get older, but when numbers fall below 40, doctors start getting concerned. Under 20 and they start planning for eventual failure. Victoria was about 21-22 in 2008 but that had fallen to about 18 by early 2009. She started being followed by nephrology (kidney docs) at a clinic we went to monthly.
2008 became 2009 and it was clear the heel was going to take much longer to heal than expected. We settled down into some routines but there was no plateau, no leveling off. Her health and business continued a very slow, but steady decline.
From February to June of 2009, my business income actually was about equal to the law office at it's average. It meant Victoria could retire. She was mentally and physically exhausted. She wanted to move to California where the warmer weather would be easier on her arthritis. I argued against it saying we couldn't just up and leave - her practice, the house, CJ just starting her freshman year in high school....we did get a realtor in and it was clear the housing bust had made it to Madison. We owed more than the house was worth. We tried to sell her practice but one deal after another fell through. Victoria was committed to moving to California and we all agreed to it come the summer. Neither I nor CJ was happy about moving during high school.
2009 saw some additional issues with Victoria's eyes and in October she had a victritomy (left eye): they take the fluid out of the eye and replace it with saline - this helps clear up a lot of debris that forms from the retinopathy. She was one of the 1% that had a bad reaction and the next couple days were very painful as they got the pressure in the eye balanced. If you have ever had a poke in the eye, think of that pain lasting for hours and hours.
Something new happened. CJ went with Sue on a camping trip. She had done so the previous year and they both enjoyed it. It was a really hot couple of days but they were going up to Devil's Lake and it would be a little cooler there. On the 2nd day they returned early because CJ had a severe allergic reaction to....the sun. CJ's carefree days in the sun were over. Even 30 minutes exposure led to hives on the exposed skin.
As we approached the 2nd anniversary of the pine needle, Victoria's emotional state was beginning to show the toll. She didn't like the constant medical appointments, the hobbling on the encased foot and she wanted to FEEL better. Business was off noticeably in part because I was not spending a lot of time marketing her practice. Between her care, and my business, I was tired. But my business was making up most of the difference. Most being the operative word. Little cracks were showing.
Into 2010: In February, Victoria was scheduled to have a victritomy in the right eye. After the issues with the first, we tried to minimize the chances of a repeat result...and failed. Although the correction was done within a day, she still experienced significant pain. In April, a new eye doctor on the scene would tell her that the damage to her optic nerves meant further surgeries to her eyes would not significantly improve her vision. She had cataracts removed and for the rest of her days, would use a high powered magnifying glass (8x, then 10x) to read basically one word at a time.
In April we took 6 days of CJs spring break and went to Califoria. CJ was terrified of being in a place where it was sunny 340 days of the year. But she had learned many precautions and was diligent about them. We left on Saturday but by Wednesday, CJ said that she loved California and she could deal with the sun issues. That Saturday we spent 3 hours on the Beach before returning home. We were all committed to moving.
We saw Victoria's team of doctors in May for final prescription refills, suggestions and tests. Victoria's creatin was 15, her eyes were stable and the heel wound, although still open was continuing to close. June was a nightmare between trying to pack, garage sales and trying to still sell the law practice. Our original plan was to leave June 30th, but that got pushed back til mid July. We met with a couple much like us, attorney and life partner that worked with him and agreed they would take over the office (but not buy). Getting them up to speed, working on my business (which was busy) and Victoria's care turned that 6 weeks of June into July into a hectic and crazy time. (I could write 100 pages of the things that were going on those few weeks and I might yet have to....)
We left on July 19th and drove down to my parents in Chicago. We left such a mess in Madison. Victoria had a bladder infection and we had to stop often and her mobility, an issue for the past couple years, started to haunt us. CJ and I had to empty the moving trailer and completely repack it at my parents house to get a better distribution. We left in the afternoon of the 20th but only averaged 90 minutes of driving before Victoria had to have a restroom break. That went on for the next 4 days as we traveled, every 90 minutes or so a bathroom break and every other stop we got gas. Fortunately, the AC worked as it was close to 100 degrees most days.
We arrived on Monday very early (Jul 26th) and slept until mid-day. We started looking for a place to live that afternoon. On Tuesday Victoria did not feel well and on Wednesday she didn't want to go out and slept most of the day. NOW, I know she had a stroke. And by Sunday, Aug 1, she was in the hospital. That story and the next 2 months can be read about here.
One of the things that started happening was Victoria's constipation (normal with people on pain meds) seemed to cause her stomach to not clear quickly. She could eat and stuff would still be in her stomach 24-36 hours later. She would usually be sick after 36 hours and it would repeat a couple weeks later. This was happening a lot during the fall and winter but had been tapering off as this year wore on.
In April, near the end of the month, Victoria was having trouble breathing and we called the paramedics. They saw a small abnormality on her EKG and took her to the trauma hospital instead of the local one near home. Tests determined she did not have a cardiac event, and that the abnormality was probably anxiety brought on by a little fluid in the lungs making it hard to breathe. She stayed in the hospital for a couple days and came home.
Throughout the last year, there were times when Victoria was very depressed. She did not like dialysis, she did not like how she had to live her life (not able to do much for herself - she hated the commode that sat next to her chair in the living room and she hated feeling sick so often). She often said she did not want to keep living her life like this. And it was hard for her, and CJ and I. Her health was a daily issue and while our expenses were lower here, my business has been slower this year than last also. It has been a struggle. Which made Victoria feel worse because she was not contributing but also costing us. We had good days and bad, but she always came back to "this is not how I want to live my life".
Friday, Sept 23rd.
Victoria was not feeling well so she did not want to go to dialysis. We didn't go.
Sunday, September 25th.
Quiet weekend, Badgers won on Saturday. Victoria developed a little cough...more like a clearing of the throat, but as the day went on, it got worse. One of her little vices was cough drops...she liked to suck on them. The doctor and pharmacist didn't see a problem as they had less sugar than hard candy. I asked if she was still using them, she said yes. By evening it was a full cough. By 11pm she said she was having trouble breathing. We tried some things (like inhaler for her asthma) but at about Midnight we called for the paramedics.
Monday, Sept 26th.
There was fluid in her lungs, not a lot, but she had a temp and doctors were concerned it might be pneumonia. But the other thing concerned them A LOT. Her potassium was 7.9 This is a dangerous, even lethal level. Potassium helps the body's electrical system/muscles operate. Too little, a serious problem also that she had last October, is bad, too much and the heart and other muscles can just stop without warning. They gave her meds to bring it down fast (which she threw up) and admitted her. Every doctor and nurse for the next two days yelled at both of us for her not doing dialysis on Friday. They did dialysis on Monday and her potassium got back down into normal range.
Tuesday, Sept 27.
Another dialysis treatment and no sign of pneumonia. Victoria wanted to go home, I wanted to take her. Doctors practically begged for her to stay one more day for another dialysis treatment. I agreed, Victoria resigned herself.
Wednesday, Sept 28.
They wanted to discharge her and have her go to the clinic for dialysis. We said no, do it in the hospital, that's what they wanted. They set dialysis for late in the evening, we said no, Victoria got discharged and we went home.
Friday, Sept 30.
At dialysis, Victoria's heart rate was around 50. This is significantly lower than usual (normally around 100). I noted it. The rest was uneventful. Badgers won on Saturday - she watched the whole game without falling asleep.
Monday, Oct 3.
Over the weekend, her heart rate stayed around 50 and again in dialysis it stayed there. Blood pressure did it's usual up/down/up/crash/up during dialysis. The crashes we tried to limit and generally they were not bad (a reading under 100/60).
Tuesday, Oct 4.
Appointment with podiatrist for the first time. He removed the callous and scab from Victoria's heel and for the first time in 3 yrs, 9 months, the heel was healed. The damage would be forever and she would need special shoe for it, but we had reached the end of that tunnel. I had CJ take pictures and emailed it to friends and family. Victoria was not happy, she wanted to be normal again.
Wednesday, Oct 5.
Dialysis. Heart rate now occasionally dipping into the 40s....48,49. I am concerned. After two years close to a 100 - and being worried about the stress that was causing, the reverse was happening and I liked it even less. Dialysis techs and nurses are also now concerned. She is scheduled to see her regular/primary doctor on Thursday, we'd bring it up with him.
Thursday, Oct 6.
Appointment with primary doctor. He listens to everything we tell him. He listens to Victoria's chest. He is concerned that she might have bacterial endocarditis. It is an infection of the heart caused by dental surgery. Yep. Victoria had two teeth pulled in July and it might have gotten into her bloodstream. The doctor wanted Victoria to have an echo-cardiogram done to check and he called a local cardiac clinic to get us in right away. We left to that appointment.
When we got there about 10 minutes later, we were told we'd have to wait about 2.5 hours. Victoria, hating every second she was in her wheelchair said no and said we were to go home. Which after a little argument from me, we did. I didn't push too much, I hoped at home she'd reconsider and I could get her in on Tuesday. Her heart rate was now consistently in the upper 40s, 46-48.
Friday, Oct 7.
Victoria woke up and said she wanted the echo. I called and the earliest they could get her in was Tuesday the 11th. She said no because we had a followup with the podiatrist on Thursday and she hated monday dialysis, tues doctor appt, wed dialysis, thur doctor appt, friday dialysis. So the echo was schedule for Oct 18th. Long delay. We went to dialysis and her nephrologist was there for his regular weekly visit. He listened to heart and said, after dialysis, he wanted her to go to the ER and have an EKG. The echo would be good, but he wanted to know what was going on in the heart. We finished dialysis and CJ was just getting out of school. So we picked her up and took her home, then went to the Urgent Care.
I thought urgent care instead of the ER because if it were just the bacterial infection, they could give her the antibiotics without all the push for doing it in-patient (getting admitted into the hospital...which of course she hates). Urgent care put her on the EKG and called for paramedics 15 seconds later. They took her next door to the hospital about 15 minutes later.
Lots of discussions, lots of sitting and waiting. Victoria wanted to go home. I said we need to wait til they decide about the pacemaker. The doctor at Urgent Care told me what they saw that concerned them:
It is called a third degree block. The top part of the heart was no longer talking to the bottom part. The two parts were running independently. The natural beat of the lower part of the heart is around 40bpm, this is why the heart was slowing down. The natural rhythm of the heart was 'disassociating', they were getting slowly out of sync. We are talking about milliseconds here. But at this point, it had apparently been over a week that the block was there. THAT was a problem. the correction was simple: a pacemaker. No open heart surgery, no general anesthesia.
Victoria was very scared of it all. I said, if there is an easy problem with the heart, this is it. Heart rate 45-47.
Saturday, Oct 8.
I got to the hospital early (8am) after leaving late(2am). Victoria said she didn't expect me til later. I said I was up and no reason not to come right away. We sat and talked about normal stuff. Couple jokes and smiles. Some seriousness when her anxiety would increase or she got quiet. Cardiologist came by and said that the pacemaker was necessary and that they were getting a team into the hospital - they didn't want to wait. The surgery would be much sooner than later. About an hour later they moved her to ICU for prep and closer monitoring. Heart rate was consistently 42-44.
ICU nurse Ed and Lisa. Ed was the primary. Nice guy. We continued much the same was as earlier. Banter, talking, holding each other's hand. It was a good day. About Noon the surgeon that was going to do the surgery came in. Okay guy. Nothing extra-ordinary. Basically gave us a rundown of what would happen. 1 1/2 to 2 hours, no complications expected except the catheter for dialysis is close to where the pacemaker will go...he didn't expect any problems. Off he went. More general talk. Ed said we made quite a pair. I said:
"We are a royal pain in the ass. She's the royal, and I'm the pain in the ass."
Victoria said, "Right, Queen Victoria."
She got a little quiet and again said she was scared. We talked for a minute and Ed interjected that the surgery would be no problem but that they had everything they needed if something went wrong. I said, "Wait a second...Victoria is a DNR."
He paused and looked at Victoria who said 'With qualifications'. That was not how they had her in the computer...they had her as full code. "Absolutely not." Victoria said.
He said he had to change it in the computer, but that he needed Victoria to talk to the doctor about it. He got the doctor on the phone and Victoria reiterated, no machines, no intubation. That is how I understood her wishes and she clearly stated them to the doctor. The conversation ended and the changes were made in the computer. About 20 minutes later, they took us to the OR. (just across the hall from the ICU. The waiting area is at the front of a long hall (50') that ends at the OR. After giving her a kiss and saying I'd be waiting, she said she wanted me to be the first person she saw after. I said I would and she was wheeled down the hall. I took a nap shortly after that.
Sometime later...don't know how long, the doctor and Lisa came out to say the surgery went well, pretty much as expected. A slight issue with one lead being near the dialysis cat but he didn't think it would be a problem long term. That she was starting to come off the local and she was anxious and upset. I said we had not had a chance to give her Xanax before surgery so he said he'd give her something to help and that they would be done in 15-20 minutes and she'd be brought out to ICU then. He and Lisa walked back down the hall.
Not 30 seconds later, over the hospital PA, "Code Blue, OR Colorado. Code Blue, OR Colorado. All teams, Code Blue" Within a minute people started coming in at a run and down the hall to the OR. About two minutes later Lisa came out of the OR at a run, with the cardiologist 10 ft behind running. As she came up I asked if it was Victoria and she just nodded. The doctor arrived and said:
"We need to intubate her now or she dies."
I don't want to make this decision. Please no I don't want to make it.
"I can't. I can't do that to her. No."
"you've got to understand we have to"
"I'll go put her on a bag and give you a minute or two, but we need to..." as he ran back down the hall, Lisa right behind.
A minute later (could have been 2 or 3) another nurse came out and said that she was not stabilizing and that I could come in if I wanted. I said yes and walked down with her to the OR.
There were like 20 people in the room and about 5 or so around her head working. The cardiologist came back to me and said he didn't know what went wrong, everything seemed to be ok, but as soon as he got back she stopped breathing. Respiratory was working with a mask and bag and trying to get air into her lungs which unexpectedly were full of fluid. They had not been at the beginning of surgery as they had a chest xray from right as they started and they were clean. Dialysis had been called and were on their way to try and get some fluid off. She had started breathing again, but she was struggling. The heart was beating (duh...it had a mechanical stimulator planted in her chest to make SURE it was beating). The cardiologist again said she needed to be on the ventilator and again, I said no. Clearly enough that everyone heard. The look they exchanged was clear, this wasn't going to work. They continued as I got on the phone and called CJ. I told her to get a ride immediately to the hospital, come to the ER and I'd get someone to meet her and bring her to the OR.
I went back into the OR and they all stopped and looked at me. The cardiologist said, "we have to put her on the machine, nothing else is going to work".
I said no.
They went back to work.
I was not matter of fact. I was crying. I was beyond upset. I was offered tissue, water, consolation I took none of it. I repeated several...a lot of times, that I could not do it to her, that was not what she wanted, that I couldn't. For most of what follows, I spent crying at some level....
She was breathing but they were supporting her. They were trying to rouse her. I came to her side and while they continued their efforts while I tried to talk to her. Her sats (oxygen in the blood) were fluctuating widely. Blood pressure was ok but they couldn't get enough oxygen in. They wanted to move her back to ICU and as they were getting her moved I said 'Open your eyes and look at me you bitch' to which she opened her eye and moved her head towards me. A little 'yea' from a couple people and I said 'we are going back to the room'
We got back to her room in the ICU and they put a C-PAP mask on her face to force air into her lungs. She was more aware and trying to talk. I tried to understand, but 'hurt' came through. The mask was on tight and she tried to take it off twice, I told her it was 'not a machine', it was just a mask and she had to leave it on. She said no and I ignored it. She asked why her arm wouldn't move and I said it was tied down so she didn't lift it up and disturb the pacemaker, she said no it hurt and I tried to move her a little off that side to give it a little room. At this point CJ had arrived and I told Victoria I was going to bring her in, she said no, but I ignored that too. I went out to meet her and talk to her. We talked and I said it was bad and that a lot of things were going on but that I wanted her in there. That she could stay out if she wanted, she said no and we went back in.
By this time the 'head respiratory critical care doctor dude' came in and wanted to know 'her history', why she was at the hospital.
Yea, I got time for this, I need to tell you whats going on? what the hell you got these 20 OTHER PEOPLE doing???
I started the story with low heart rate and friday. The cardiologist chimed in with 'we don't know what caused her to crash and that surgery had gone well....'
Yep, by this time I was getting tired of said cardiologist with his protestations the surgery went well but the patient DIED shit....
I got back next to Victoria who had settled down some but was trying say something. She said 'hurts' and tried to point to her chest(?) or shoulder and said where was she, I said in the hospital room and that they were trying to get oxygen into her; she said hurt again and then she threw up. I got my arm under her and lifted her to a sitting position with my right arm while ripping the C-PAP mask off with my left. She threw up all over the pacemaker wound dressings and arm with IV connections. It was green and smelly and it had a couple peas in it. Peas? She hates peas. How could she have peas? I let her lean back and the 'head dude' said he wanted to talk to me outside the room. I had CJ come stand next to Victoria and I walked out.
He said the throwing up was confirmation of what he thought happened:
Victoria spent the entire surgery flat on her back. As they were finishing, she threw up but because of her position, instead of out, it went into her lungs. The peas said the stomach was full of Thursday and Friday. It was the most acidic, vile, rotting crap you could imagine, poured right down into her lungs. Battery acid or bleach would have done less damage. The lungs were full not of fluid but bile and stomach crap and it would have been destroying tissue from the second it got in there. She need the ventilator now but he couldn't say that even that would delay things more than a day or so. And even if they could get her stabilized, it would be months and months of hard recovery, all the time on the ventilator. Otherwise, all they could do would be to make her comfortable.
I said no. Make her comfortable. I went back into the room. I talked to her and she said 'not my life', which I understood to mean this was not the life she wanted to live. I said it was ok. No more fighting. No more fighting. It's ok. We're done. You're done, you don't have to fight anymore. No more pain. Just go to sleep and it'll be ok. She said ok, sleep and her face relaxed and she leaned back and closed her eyes.
They put a regular air mask on and everyone else left the room. CJ and I stood with her and I told her she was going to leave soon. Her breathing got slower and harder. After about 5-10(?) minutes, Victoria stopped breathing for about a minute and a half...her lips went white and I opened an eye and it didn't move or change. She started breathing again, very labored, for about 2 minutes, then stopped again. I said to CJ she was gone and we kissed her and went and sat at the foot of the bed in a large chair. Ed continued to hold her arm and said she still had a pulse. She didn't breathe but once or twice again and after about 10 minutes, he asked the dialysis tech to check for a pulse. There was none. It was about 6:40pm.
Not so much then, but later...how could it have been so late. It seemed like less than an hour passed from the Code Blue to the end...
They let us stay. We left after about 10 minutes after I asked if CJ wanted to stay or go somewhere to just talk or be with each other. She said, the beach? We left and made it to the beach, Torrey Pines - a favorite of Victoria's that she and I had been to just a month or so ago to watch the sunset- to watch the sunset. We stayed and talked a little for about 30 minutes then went back to the hospital so I could collect Victoria's things and say goodbye.
One of the OR nurses (who kept trying to give me tissue or water) caught me in the hall - it was clear SHE'D been crying. She said they wanted to say thank you to me for standing up for Victoria. For respecting her wishes when everyone and everything demanded otherwise. I said "sometimes doing the right thing, hurts a lot...thank you" and I left.
We went home, CJ ate a little something, and then we both went to bed.
God I miss her. I have said "it was the wrong decision for CJ, it was the wrong decision for me, but it was the right decision for Victoria" and in the end, I told her it would always be her choice.
I don't second guess. Victoria made thousands, millions of decisions over many years that led up to that point on Saturday. I only made sure that the last one was listened to...by everyone...including me.
She is the love of my life. The mother to our daughter. I love her. And, I know she loved me and CJ. The pain and suffering of the last year are done and she doesn't have to face more. That is my comfort.
One day, one hour at a time....