Roger’s week started out a little rough with the news that the antibiotics that he’s taking is not approved by the insurance company for home use.
He called me in tears and was so disappointed as he was really looking forward to getting out of the hospital and home. I told him that he needed to get out of that building and re-adjust his thinking. He agreed so I left the office to see if I could break him out for a little while.
A HAPPY PLATE!
Upon my arrival, he was doing a little better and was eating his lunch of swiss steak, mashed potatoes and peas. As you can see from the photo, he ended up with a Happy Plate!
I walked down to talk with the case manager, Lori to see what our options might be in taking him out beyond the confines of those hospital walls. She told me to just let the nurse know that he is going out and all should be fine. Well, that’s all it took.
Roger was already in his wheelchair and was thrilled to hear the news. We got him all “bundled up” (a light jacket with a hood) and rolled him toward the door. We really felt like we were sneaking out of school or something….LOL. As we hit the door, he said … I’m FREE…WEEEEE… we both chuckled. It was fun to see him smile and laugh. A far cry from our earlier conversation.
He started out pushing himself down the sidewalk but quickly decided that his frail arms were no match for the sidewalk so relinquished the wheelchair to me for pushing. We strolled out as far away from the building as we could go and took our time looking at the newly planted annuals along the walkways, the blue sky with the whispy white clouds and the nice lush green freshly mowed grass. He even made me stop, take off my shoes and walk through it barefoot. We had a good giggle over that! All in all, we walked and talked for over an hour. Good therapy for both of us but to see the smile on his face was definitely worth it!! By the time we arrived back to his room, he was in better spirits and okay with the earlier happenings of the day.
I vowed that I would work from my end to help with the exit process. I told Roger and Lori that I would send an email to Karen and Dr. Wong pleading Roger’s case and to see if there was anything that could be done to move this process along as quickly as possible.
On Tuesday morning, I composed an email (content noted at the bottom of this post) and sent it to the transplant coordinator, Karen. Within 15 minutes of hitting the send button, I received a call from Dr. Wong. He explained to me that Roger is on 2 antibiotics at the moment. Dr. Wong was going to conference with the infectious disease doctors at Banner to see if Roger needed to be on such powerful drugs or if he could change to something that would allow him to come home. He also told me that one of the enzyme levels in the liver has been very high. At one point it was at 1,400. As of Sunday it was 457. They would like to see it at 300 or below before they would take him off the antibiotics all together. At 1,400, Roger’s liver was rejecting, so they are happy to see the numbers go down.
While I was on the phone with Dr. Wong, he was receiving a call from Dr. Singh. I had sent a copy of the email to Lori, the case manager at Kindred. The wheels were now fully in motion and everyone was working to see what they could do for Roger.
Dr. Wong told me that he would prefer Roger to stay in the hospital for another week to a week and a half to make sure that the enzyme level continued its downhill spiral but would also work on getting all the doctors involved with Roger’s case to agree on a release date.
The rest of the day was spent on the phone between Roger, Dr. Wong and the case manager, Lori. In the end, Roger has 2 options. He can stay in the hospital where he’s being monitored each day and receiving the necessary antibiotics via IV or we can bring him home where we will have to transport him each day to an outpatient facility a few miles from here to receive the antibiotics via IV (a two hour process) and transport him home.
I presented both options to Roger with emphasis on the first option, my argument being that we want to make darn sure this time that everything is good and he’ll have no more flair ups when he gets home. He agreed. We don’t want to take him back to Banner and start all over again. I also told him that I would do whatever he decided. So, he will either be home by this weekend or we will have a homecoming closer to Thanksgiving. Either way, it will be good to have him home.
Following is the email that was sent:
Good morning, Karen.
I know you are aware that the wheels are in motion to bring Roger home.
I spoke at length yesterday with Lori regarding the antibiotic medication situation and insurance. I’m gathering from Lori that there may or may not be a generic drug that insurance would agree to pay for.
Roger is so ready to come home that yesterday was definitely a low point for him. He was in tears when he was told that the antibiotic situation was keeping him from his destination…home….. he called me and was so disappointed.
He’s been in the hospital now since the beginning of July. He’s eating everything on his plate and looking forward to his next meal with much anticipation. I’ve taken 3 bags of Cheetos to him in the last couple of weeks and his tray has Snicker and Butterfinger candy bars for him to enjoy between meals. He looks so much better and is able to get up and down from bed on his own and to the wheelchair. He’s walking a lot more and spending some quality time with PT and OT.
I guess I’m pleading with you and Dr. Wong to find a way to make his return home a reality. What do I need to do? Is it the cost of the medication or just the availability of the right medication for home use keeping him in Kindred?
I know that we need to be cautious regarding his condition but I feel that being home would be a good thing. Especially since he is eating really well and keeping everything down. You know that I’m prepared to keep up on his medication regiment as well as blood pressure, temperature, etc.
Please let me know your thoughts. I hope that there will be a way for him to come home and soon.
Thanks so much, Karen. Thanks to Dr. Wong too.
