It appeared in the last post that we were done with Hospital stays. The universe had a different opinion.
The ride home
When we were discharged we had a long walk from our room to the Valet where the car was left a week ago today. Michele did well walking there but did catch a foot walking down the hall but did not fall. It was late on release. We decided we wanted to eat before we got home. We had dinner and it was uneventful. Michele ate a lot of food as a good sign.
She was quiet on the ride and we knew it was more that she was tired from the stay.
When we got home, we got our bags out of the car. Michele went into the house first and made her way to the bedroom. I had one bag outside that I needed to get into the house and get the door closed so that the bugs would not get in.
Right when I closed the door, I heard something from the bedroom. I found her on the floor next to the bed. She had fallen. Face down. I managed to get her sitting up. She was a bit disoriented but was awake. I got her out of her Jacket and could tell she was sweating underneath.
I called Megan and our Neighbor Katrinia for help. Megan and Jonathan rushed right over. In the meantime, I had called 911 and the EMS arrived. Immediately I could tell that she had a brush burn on her left side of the face and a black eye was developing. We had got her up into the bed with a bag of ice on her face.
EMS checked all her vitals and they were ok. We talked about weather she had hit anything other than the floor, but decided there would have been more blood if that were the case.
Michele wanted to rest in her bed for a little while. Between Jonathan and Megan and myself, we watched her for a few hours. Waking her up to make sure that she could answer any questions we asked. The Ice helped with the pain and swelling. We managed to sleep for a few hours.
I put our luggage back in the car. Michele was not feeling well and wanted to lay down in the back seat. We knew we had to go back to MD Anderson to make sure that they had her full medical history. MDA has an ER they call the Acute Cancer Care Center (ACCC). We arrived shortly before 6 am. We wanted to get there before the normal morning rush started. I loaded her in a wheel chair and pushed her into the ACCC.
We checked her in and they were taking her to do Vitals. She was complaining about needing to lay down. I went to park the car. When I got back they told me they had to rush up to the Triage room that she appeared to have a seizure. I was whisked up to be with her.
She was aware when I got to the room. They gave her seizure medicine and started to work her up.
The chase on the ACCC
Throughout the day there were multiple departments in to do test and diagnose the situation. We know she has two small fracture in her orbital socket on her left eye. Nothing much to do but wait on it to heal. Her vision is good and they checked all her “innards” on her eye and everything looks good. She has good range of motion.
Neurology seemed to rule out seizures as the cause. The evidence was not consistent with it being that. Initially, I was hoping we may be home again that night, but they told us they were going to admit her for observation. Megan came up to relieve me for the night and I grabbed a hotel down the street to get a full nights rest.
The problem with the ACCC
The hospital has been at capacity recently. We expected a delay in getting a room. We did not expect to be in the ACCC for 36 hours.
Yes 36 hours. I assure you we made the last 4 hours brutal for the staff. I won’t go into all the details. In general, the room was not horrible, but the bed was an ER bed. Not very comfortable. Bedside commode only and the room was set to sub freezing.
I went to sleep Thursday thinking they would be moved but woke up to her not being moved. We tried talking to several departments, but kept being redirected back to the ACCC nursing staff. Mid morning, a Leukemia Doctor stopped in to check on us. We were told that there were discharges today and that it would be later before we had a room.
As it approached Shift change we became more panicked. Between yelling at the charge nurse, admissions, and trying to reach out to the Patient Advocates we were all in an uproar. The charge nurse did stay on until we were moved and made sure that we were moved by her and another nurse.
We arrived on floor 16 again around 7:30 pm.
We are told that a hospital administrator is aware of the situation, but have not been contacted yet. The night nurse manager did pop in the room last night to apologize. We will get answers. We are not going to walk away from this one. We expect a quick and substantive response and attention to our thoughts and well being. They owe us an answer as to what happened Thursday night. More on that in a later post.
Orthostatic Hypotension. Look it up. 8-). Her blood pressure is dropping super low, especially when she stands. This seems to explain everything that has happened so far. They are testing her BP every 8 hours in different positions. They also are giving here midodrine which helps raise the blood pressure.
She is not able to take any pain medicine at this time as it can counter her BP. She is awake and watching TV now. The medicine is appearing to help with her BP numbers this afternoon. We may be able to go home tomorrow, but we won’t know until after overnight testing and the Doctors assessment.
They also are going to monitor her heart for 48 hours starting Tuesday. This is outpatient. They want to make sure there are no abnormalities with her heart as the Doxerubicine with the last chemo can strain the heart.
July is busy
Linda will be back Monday to help out for the week. Tuesday she should get her last dose of chemo in the outpatient clinic. Day 11 if you have been following along from the beginning.
She is determined to ring the bell on Tuesday. We will find one in the building for sure.
Wednesday she also has a PET scan scheduled to do a full body scan looking for any remnants of the Leukemia or other issues.
Thursday we are back with our main doctor to review how she is doing.
Middle of July will be the start of the 12 days of targeted Radiation. (Elevator G).
I did not want to post until we knew more.
I know that I am who I am supposed to be for her on a daily basis. When I found her face down on the carpet, I knew I needed to assess the situation and get her help. It was a surreal scene. To find any loved one in an unexpected position you can panic are go into action. She needs me to be the calm person in the moment. The rock she depends on.
The ACCC Situation is honestly the worst of the situations we have been in on this Journey. I am mad. Someone dropped the ball. Not everyone handles dropping the ball well. I have read the Patient Advocate information and I know their intent is to find an answer and work to make it better for the future.
I find myself sleeping on a hospital coach that I said in the last post would not happen again for a long time. Don’t tempt the Hospital. It will call you on it. It was bitter sweet to sleep on the coach again as opposed the recliner chair that Megan had to endure for Thursday night.
Saturday night and we are back to watching HGTV and the Hallmark channel. Christmas in July is taken seriously on that channel.
I am also busy taking the test needed to allow our Agency to continue to do Medicare programs. I LOVE CONTINUING EDUCATION! (not). It is government regulation training so obviously I am taking it between naps.
They added a silent bed pad to alert the team when she gets up. Which is WAY better than the loud alarm that the bed has. It is really only for her to get up to use the restroom. I do think that we are marked in the system to have exceptional service as the nurses arrive within 30 seconds of her getting up.
I know some folks had sent some items to the house expecting us to be there. We really wish we were there as well. Unfortunately, it did not survive the Texas heat. We appreciate the intentions.
Keep us in you prayers. We continue to need them. Hopefully tomorrow I can write about when we will be able to head home again.