Micah and Maya were in action at 8:15 this morning. At 9:00 am sharp, I called the insurance company to talk to our care coordinator, but she did not answer the phone. I left a message with my information, and hoped she would call back before our meeting.
The babysitter arrived and I took Micah to preschool. He did a little better today - he had a few attempts at pushing and screaming, but I was able to intervene and keep him from any major incidents. The "good" news is a few of the other children were doing the same thing, so Micah did not look like the trouble child. There is one parent, however, that has this way of watching me (and Micah) as if she is threatened by us. Micah pushed her daughter last week, and she has been giving me this "you are a parent of a horrible, uncontrolled child" kind of look. I have since decided that her child cries at everything, and seems to always get pushed by EVERYONE, and perhaps she is a bit of a drama queen. The only child who seemed to be upset, or pushed, or injured all day was her child. Coincidence?
Right after Micah's class, DH and I took Maya and headed up to the hospital. Even Delicious was armed for battle...complete in her Baby Armour outfit, courtesy of Under Armour. I passed my father on the way there, and we all arrived around the same time. During my car ride up, the insurance coordinator called on the phone. She went over our benefits, and said we have 60 days of rehabilitation coverage. She indicated that if the doctor recommended a longer stay, it would be covered. She also told us that we could take mom to a "sub-acute" rehab location, and that our insurance would cover transfers back for radiation treatment.
Many of you are probably wondering what the difference is between acute and sub-acute. I certainly was! An acute rehab facility is a higher standard of care than a sub-acute facility. It requires the following:
- treatment from a multidisciplinary team consisting of at least two therapies;
- medically stable patient that is capable and willing to participate in intensive therapy for a minimum of three hours per day, at least five days per week;
- program that is expected to result in significant therapeutic improvement over a clearly defined period of time;
- program that is individualized and documentation that outlines quantifiable, attainable treatment goals;
- treatment in an inpatient facility because the individual requires: 1) 24-hour a day access to a registered nurse with specialized training in rehabilitation care; 2) frequent rehabilitation team assessment and intervention due to the potential risk of significant change in physical or medical status; and 3) an intensity, frequency and duration as to make it impractical for the individual to receive services in a less intense care setting.
A sub-acute facility, however, is more like a nursing home with therapy. Only 2 hours of therapy are required each day, and only steady progress towards therapy goals is required. When I arrived at the hospital, I ran into the resident on my way to my mother's room. I talked to her about the situation, and she was thrilled to hear that we could take mom to a sub-acute rehabilitation facility, and felt that was a more appropriate option. I again explained that I felt another week or so at the acute level was warranted, especially now that she was making it through all of her therapy sessions each day and starting to make progress. She agreed, and went to talk to the rest of the team.
I helped my mother finish lunch and I read her the blog and her messages. My mom was so touched that her nurse had posted a message to her. Our friend also arrived for a visit (she was at the hospital for an appointment) and DH went to talk to her for a bit. I also received a message that our advocate would not be able to attend the meeting today - unfortunate.
The team convened at 1:00 pm, and we heard their recommendations/explanations. I made our case for continued care at the acute level and discussed the importance of the proximity to the hospital at this point in my mother's recovery. I understood from our meeting that the entire team was on board with getting another week for my mother and slowly working on identifying an appropriate transition to a sub-acute facility if this next week did not result in sufficient progress for her (or if she continued to find the 3 hours of therapy overwhelming).
The team, however, indicated that our insurance was the issue. We put their social worker in touch with our care coordinator at the insurance company, and then we waited. We waited for about four hours before they came back to us with an answer. We were down at radiation (which was quite late again), and I had just come out of the radiation room where my mother had asked me to come in with her and take a picture of her in her mask for you all to see. That is the picture of the day!
The social worker was sitting there in the waiting area, and she informed us that the insurance had denied the request to stay at the hospital rehab facility, but approved our request for a sub-acute rehab facility. She also told us that we needed to move mom in the morning! We were outraged...how can we possibly identify a new facility and move mom in less than 24 hours?
We got on the phone and started calling insurance, but the case manager has yet to call back. I will hopefully reach her in the morning. We have a list of sub-acute facilities, and we've received a few recommendations that we will check into. In the meantime, we intend to appeal the decision, and ask for more time to identify an appropriate location and create a transport plan. We are also going to make an argument that we need the extra time in the existing rehab facility to help my mother achieve some more goals...such as building sufficient strength to be transported back to the hospital for radiation by wheelchair.
So, we are seeking recommendations for a good nursing home/rehabilitation location close to the hospital. My mother is not able to withstand a long transport at this time, and frankly, I'm not certain my family can handle the additional travel time either. Several of you have asked why not move her radiation treatment? Brain radiation is very specific...it is calibrated to a particular machine, the treatment plan is very specific, and it requires a special mask to be built. My mother would have to start radiation, build a new mask with far less sensitive equipment, and have the radiation done by people with much less expertise than the current hospital. Unlike radiation for some other types of cancer, the radiologist and the equipment truly do matter in the success of the treatment. Many other places would not even attempt radiation with my mother's condition - it is just too advanced and too complicated.
Today we return to battle - hopefully to secure another week to try and buy more time to build my mother's strength to handle a stay at a sub-acute facility. We also have a GI consult today (and perhaps we can turn that into a new hospital stay and then she would be entitled to 2 more weeks after that stay in an acute rehabilitation facility). If we fail to win the appeal, we have to hope for 24-48 hours additional to effect the transfer to a sub-acute facility.
I am definitely worried about whether a sub-acute facility can handle my mother's needs right now, and whether my mother is strong enough to handle the daily transport back to the hospital for radiation. I wish there was an inpatient radiation option - my mother would certainly qualify. What a mess!
After fighting with the hospital and expressing our frustration to the doctors, I think we finally convinced the attending on the floor to go to battle for us for the next week. It may just be too little, too late, as the record they have created thus far has not been helpful. We arrived home well after 6:00...poor babysitter! Micah was MISERABLE, he was cranking and crying, and just would not cooperate with her. To make matters worse, I think he has a cold - his nose was all stuffy and he sounded terrible. I don't know how we can bring him to the hospital this weekend, but perhaps this cold will be short-lived.
We put the kids to bed, and my phone was ringing off the hook - thanks to all who called to give us some suggestions about facilities and find out how we are doing. We are frustrated, but hope today will give us better answers.