My last post about my husband Arthur in rehab ended with “One way or the other, Arthur will be out of his current facility tomorrow.” That was last Friday, February 28.

If only that statement were true.

Arthur, a paraplegic, wanted to transfer from his current sub-acute rehab to National Rehabilitation Hospital (NRH), an acute rehab in Washington DC. His physical and occupational therapy would increase from 1.5 hours/day to 3 hours/day. His hands were healing nicely from his double carpal tunnel surgery and he was able to put weight on them, making his physical therapy sessions more useful.

During the week, both Arthur and his social worker made a flurry of calls to facilitate the transfer to NRH. She sent over lists of his medications and other forms they required by fax. Oddly, faxes are considered to be safer than emails for privacy. I can’t see how this can possibly be true since faxes are available to anyone who passes the fax machine.

Starting Thursday evening, Arthur was charged $100/night co-pay to continue his stay at his current facility. Arthur and I had agreed that if his transfer was not approved by Friday, he would come home and do out-patient PT/OT.

Friday began with NRH approving Arthur’s transfer to their facility for in-patient treatment. The last part we were waiting for was his Medicare plan with Johns Hopkins to agree to the transfer. Because NRH is out of network, Johns Hopkins and NRH negotiate a fee for Arthur’s bed and room.

Arthur packed himself up and waited. And waited. And waited. Around 4:00pm, the social worker came into Arthur’s room. She said there was a 50% chance that the transfer would be approved by the end of the day. The negotiated fee passed the first level of corporate at NRH and was waiting for approval for the next level at NRH to finalize it.

Arthur told the social worker that if the transfer to NRH didn’t happen by 5:00pm, he was going to go home.

The social worker didn’t offer any options to Arthur. This surprised me. And would be problematic.

At 4:50, Arthur made one last call to NRH to see if the offer by Johns Hopkins was approved by NRH. He didn’t get a response.

Arthur and I talked on the phone and agreed that he would leave Brooke Grove that evening. He wheeled himself to the nurse’s station and told them that he was going to leave and go home because he hadn’t heard anything from NRH.

The nurse said, “You can’t do that. You are leaving against medical advice. You need a doctor’s order to do that.” It was the first he had heard that he needed a doctor’s order to go home. He asked the nurse, “Can I get the doctor to do that now? ”

“No, he’s gone home for the evening.”

“Is there another doctor at the facility?”

“No, no one is available. They won’t be back until Monday.”

“What about Saturday?”

“No, no one is here tomorrow.”

Arthur called and relayed this information to me. How could he not have been given a discharge by the doctor or options from the social worker?

He was already on the hook for $100 for staying Thursday night. If he stayed through the weekend, he would be charged $400 total. We were told by the nurse that if he left against medical advice, he would not be able to get any physical therapy or occupational therapy.

After talking the situation over with several people, we agreed that he should stay over the weekend. This decision did not make either of us happy. There was still no guarantee that he would be approved to transfer to NRH on Monday. He would receive no PT/OT over the weekend. He was paying to stay at a very nice hotel.

On Monday morning, NRH called Arthur. The representative asked him several questions about his health and abilities to make sure he qualified to get in. She was satisfied with his responses and said she would work on getting a bed for Arthur.

Always the question of a bed being available.

His social worker was contacted by NRH and she began the paperwork to release Arthur from his current rehab.

Arthur still needed a ride to NRH. Transportation is not covered by his plan. I was willing to drive him in his handicap accessible van because hiring medical transport could run a few hundred dollars. Unfortunately, I didn’t feel well on Monday.

At 2:00pm we asked the social worker to find him a medical transport. An hour went by and we hadn’t heard from her. I went out to find her and we met in the hall. She said no one was available because it was too late in the day. Again, the thought, doesn’t she know this? Isn’t this part of her job?

I’m exhausted and not feeling well. I really don’t want to drive him. What are our options? The social worker said she would see if the medical transport from the hospital was available. If they had a service at the hospital, why didn’t we start there?

While we were waiting in Arthur’s room, a young man came in and said he had someone to take Arthur to NRH. Good news! I asked the cost. He seemed surprised at my question, as if we would immediately follow him. He said he didn’t know and left to find out. While he was gone, the social worker came in and told us the service was free. A short while later, the young man returned and said the cost would be $54. The social worker was surprised. We didn’t care. The ride wasn’t free, but it was a bargain nonetheless.

Finally, after nearly a week of pushing to make this happen, Arthur was going to be an in-patient at NRH.

At NRH, they gave him an inflatable bed. It has a mechanism that increases and decreases air to help prevent bed sores, a common problem for people who spend a lot of time in bed. Last evening he told me the bed deflated. At around 7:00pm he called the nurse and they inflated it. And again a second time.

Arthur and I spoke around 10:30pm. He told me the mattress was flat again and his back, which has four rods in it, was hurting. When the nurse came in to give him his evening medications, Arthur told her the bed deflated again. I was on speaker when the nurse came in. She tried to inflate it for the third time but was unable to do so.

We needed to get the bed situation fixed asap. Arthur asked the nurse for a supervisor. The nurse said, “After I give you your medications, I will get the supervisor.” She left and returned two more times with things that Arthur needed like water to take his pills, but she still hadn’t contacted the supervisor. When she returned the third time, she said she would call the company the hospital rented the bed from and see if they could get a replacement for Arthur. Enough! Arthur told her, “No, it will take too long for the bed to get here.”

I said, “His back has been hurting for three hours. We need to resolve this issue now.”

Family advocates are important. The patient alone can only do so much. Arthur cannot get himself out of bed because he is a fall risk so he is at the mercy of whoever enters his room and their willingness to help him.

At this point, Arthur and I were both frustrated. I was concerned that this issue wasn’t going to be resolved and Arthur may have to lay on his back all night long. This was unacceptable.

A nurse can make your experience more palatable or they can make it more difficult. They have many patients and many jobs to do and they may decide that your request is not a priority. This was my concern. Neither of us would have slept well if this issue wasn’t resolved.

Gratefully, the nurse relented and said, “I will find you a regular bed. Is that okay?”

Yes! More than okay! Perfect!

A short time later, Arthur was transferred to a new bed without an air mattress and was able to go to sleep.

I visited him yesterday. His days are full of scheduled PT/OT as well as time scheduled for the psychologist on his team and recreational therapy. I was able to meet the staff while there.

In PT, I watched as Arthur used a piece of equipment called “The rickshaw.” Weights are added to the rickshaw and Arthur uses his arms to press the weights. He needs to get his upper body strength back to transfer his total body weight. PT will increase the weights until he can do this.

We are grateful the transition took place, grateful for the staff at NRH.

And, on a side note, I called his last rehab and negotiated with the administrator to reduce the $400 Arthur was charged for four nights because there was some staff error involved. The administrator agreed to reduce the charge to half. Arthur is now responsible for only $200!

Angela DiCicco

The Italian Grandmama

theitaliangrandmama@gmail.com

theitaliangrandmama.com

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