We left Tuesday, July 20th - a day later than planned. We got down to Chicago to see my parents and drop off a few things for them. We left the Madison house a disaster and worse, we left a lot of stuff we should have brought with us. Time and money worked against us - we had to leave with what we had.
The drive to Chicago showed we packed the trailer badly. On Wednesday morning, CJ and I unloaded and repacked the trailer. We still managed to leave around 3pm. We got to Des Moines. Victoria had either a bladder infection or the trip was just too much, no matter, we had to stop about every 2 hours for her to go to the bathroom. Every other stop we got gas. The trailer was very heavily loaded and when driving, we were limited to about 58-59 miles/hr. We averaged 40 miles/hr over the course of each day. Instead of a 4 day trip, it took 5 days. We made Wichita on day two, and Amarillo on day three. Day four we were in Gallup NM. Victoria was finding it increasingly difficult to get out and into the truck and make it to bathrooms. We slept, but we have one dog with us and it added to the minor issues.
Day 5 we left Gallup and I was determined to make San Diego. It took us 15 hours, almost a dozen stops, but we did pull into Escondido (about 10 miles north of Poway, our target city) early Monday morning.(2am ish). We collapsed into bed, but got up the next mornin to start looking for somewhere to live. We spent 5-6 hours looking, V slept most of the time. We got back to the hotel and crashed. V's appetite, never good, sucked. She ate little, drank less. Tuesday, the bathroom breaks averaged every 90 minutes, and V's ability to get in and out of the truck into the bathroom degraded significantly - she was no longer able to use the walker. We did bring the wheelchair but it was buried in the trailer awaiting unpacking.
Wednesday we found a place, but it was rented before we could get the paperwork and money back to them 6 hours later. Victoria only wanted to be in the hotel so we left her while looking. She did not take all of her meds Tuesday night, ate little, drank less. Bathroom, a lot. I started worrying about dehydration. She didn't take Wednesday meds. Thursday, she was not very responsive, only wanting to lay down, or go to the bathroom. We got some Ensure on Wed and she had a couple Wednesday and Thursday morning. CJ and I went back out looking for places and returned to find V on the floor unable to get up. We got her up and into the bed. But she was not very coherent. She slept, then had an Ensure and slept more. Friday we gave up on finding a house, and looked at some apartments. We needed 2-3 bedrooms, pets allowed, ground floor, under $1800. We found one finally in a slightly seedy area. I balked but CJ liked it and we took the paperwork home.
V was not lucid when we got back. She wanted to go to the bathroom and we did that, but no sooner than we got her back to the bed, she wanted to go again. We did, but back to the bed, she wanted to again. She could barely walk, her urine was not concentrated. She would not eat. She could not hold a drink. She was not aware of her general surroundings. She knew us, but could not say our names, where we were. Saturday we went out for some food and drinks and came back to find her worse. Bathroom was all that she could say. CJ and I talked about 911. By Sunday morning, 911 was not if, but when. She fell out of the bed and I picked her up but all she could say was 'we're done', 'you're out of here', 'let me go to the bathroom'. When she could no longer help me get her to the bathroom, I called 911. It was Sunday, Aug 1, 4pm.
To the EMTs she could give her name, but answer no other questions. The hospital was 7 minutes from the hotel. At the ER (CJ rode with Victoria, I followed with the dog), her blood pressure was 238/120, bloodsugar was 118, calcium was very elevated. They admitted her. For the next two days they tried to get the bloodpressure and calcium down with little luck. Meanwhile, she remained not lucid. She did tell me she wanted me gone, she was not going to forget this. I ignored it, but despite having a foley, she continued to insist on getting out of bed to go to the bathroom.
We did not get the apartment CJ wanted, it was rented by the time we got back Monday with the paperwork. We did go back to another place that did not have anything when we first went by the Wednesday before, now they did, and by the time we left, we were approved for a two bed, one bath, apartment on the first floor. Cost was lower than I hoped. We could move in on Monday the 9th
Tuesday night, they put her in restraints. That was what we came into on Wednesday, Aug 4. Blood pressure was still in the upper 180s, sugars ok, but calcium was still high. As to the 'disorientation', 5 doctors, no answer. Creatine was 3.6 - it was not the kidneys. She complained of being assaulted. She was very bruised. We have many pictures.
Thursday, bloodpressure in the 150/160s, calcium still high. Creatine 4.5. Everyone notices that she was 'drooping' on the left side of her face. Speaking was slurred. Eating/drinking difficult. They got more aggressive on both bloodpressure and calcium. Friday, bloodpressure in the 140s, early morning in the low 130s. Calcuim coming down. Victoria showing periods of lucidity, but when just waking, very disoriented. Creatine 5.3. The kidneys were failing. Saturday, creatine was 5.8. They recommended surgery to prepare for dialysis. It was scheduled for Monday, with dialysis to follow Monday night. Surgery didn't happen til Monday evening. Creatine 6.9, virtually no urine since Saturday. Dialysis on Tuesday afternoon. Sunday, Aug 8, Victoria was back. She was still not sure of things, but normal conversation was possible. For the next 5 days, therapists, doctors worked with her to determine what happened. It took a week to get an MRI. Two recent TIAs, no stroke. We think one occurred the Wednesday after getting to CA, the second, the Thursday in the hospital. First caused the disorientation, the second the slurred speech and other physical issues. Thursday, Aug 12 she was scheduled to have the PD cath installed the next day (this would allow at home dialysis after it healed in a couple of weeks). Conversations with Victoria indicate that the issue prior to and during the first days in the hospital were limited to articulation. She heard our questions, formulated answers, then garbage came out. Her memory of the events was not complete, but nearly so. She again indicated she had been assaulted by a female nurse on the first Tuesday night (the night the restraints were put on). That night, one of the few I did not have my phone on, I received an urgent call from the hospital at 12:38am. On Wednesday morning, when I got the message, I called. There was no record of the call, or any event that would have prompted one. Friday, the 13th, the PD cath was put in. Sunday, she was moved from the hospital to a skilled nursing facility (a SNF, pronounced sniff!). Care is as you would expect, not great.
Tuesday, 8/17. CJ had to register for school. We spent an hour there in the sun, 95 degrees, only to find out she had to come back on Thursday and work with a counselor because she was a new enrollee. We made it to the Dialysis clinic for Victoria's first non-hospital dialysis. Thursday, CJ and I met with the counselor and got her classes chosen. She suggested CJ be on a couple of advanced tracks: History, English, Geometry. CJ was all for it. We have to go back on Monday for ID picture. She starts school officially on Wednesday Aug 25th.
Other little details. Thursday the 5th, CJ and I were able to unload the trailer into a storage facility (near the original hotel and 15 miles north of here) UHaul gave us a free 30 day rental. The dog is settling in. I had almost no business in July. What business I did get I had to do after we got back from the hospital (11pm or so). We didn't have the buffer I wanted, and the travel to the hospital and snif (about 15 miles away twice a day) has been eating into our reserves. We were able to get the misc furniture we needed but it is going to be real tight for a while. We are slowly unloading the storage as we get furniture pieces built and into place.
Between getting CJ set for school, hospital/snif visits, moving stuff from storage, we are falling into bed after very late once a day meals. CJ is holding up pretty well but it has been hard on her. The ambulance ride, watching her mom unable to answer basic questions, the restraints, leaving her nightly....new school, new environment. She is doing better than can be expected.
Right now, CJ, Victoria and I just want to get her home. That appears to be in the plan for Wednesday.
The hits keep on rolling. Monday, Aug 23. Ollie (our dog) got hit by a car - which took off, did not stop. The damage is not life threatening, 60 stitches in his muzzle and a couple on the leg. The vet takes full payment before release. Joy. There went the little buffer we had. He is back home (got him back at 5am) and appears he will fully recover. CJ was walking him, she is not good. Afraid she almost killed her mom's dog. School starts in the morning.
CJ picked out a mat for the front door stoop, it says, Live Life Simply. That is our plan for the next couple years.
What was your summer like?