July 12, 2016
Jonah moved from the Medical/Oncology floor at DRMC to the Acute Neuro-rehab unit today. What a great experience it was on the Medical/Oncology floor. Jo had amazingly kind and doting nurses and CNA’s, answering within seconds, Jo’s calls for assistance. This was an incredible reinforcement for him in learning to speak for himself and ask for things he needs. His doctors contacted me personally on several occasions and I was kept in the loop of all that was going on with Jo. I felt listened to by everyone associated with Jo’s care. One of his nurses gave him a facial!!!! It made Jo (and me) feel fabulous!! What an efficient and kind group up there!!! We received a consult from the surgeons regarding placing a permanent feeding tube in Jo’s upper intestine to ensure the caloric intake he requires. I just don’t feel good about that procedure and it made me feel good that despite Jo’s eating and throwing up issues the doctor consulting the issues felt that we should wait another little while to see if Jo is going to stop this vertigo/nausea/vomiting thing.
Jonah is rested and he had 3 solid days without throwing up!!!! His color in his face is back. He ate well, even with the new NG tube running through his nose and down his throat. He talked more; he text me each day a few times a day. Tom had him connect to this app Tom has called, “Life360”. The whole family is on it. It keeps track of where you are, so everyone in the family knows where you are at various points of the day. Anyway we wanted Jo to know where we were at all times. I had no idea that this app had a messaging feature, however Jo figured it out and all of a sudden I was getting messages from him through this app. Mr. Smarty Pants!
Jonah is still having some difficulty with his eyes. I don’t know if it is the bouncing from the nystagmus or some other issue, however he has a difficult time hitting the buttons he wants to. It is almost as if his sight is off by a few millimeters. Tom asked him a while ago if his eyes were worse than before his accident and he said they were. We will certainly attack this when he is able to get around easier.
Tom called him first thing in the morning and asked what he wanted him to bring Jo for lunch. Jo answered, “Chicken strips”. Tom said, “They have excellent strips there at the hospital, I’ll get you some of those”. Jo answered, “No, the ones from Arby’s. We just laughed that he is saying what he wants. This is the one issue that was keeping Jo in the Rancho 6 level of cognitive functioning. I think he is coming out of it!!!! He is always kind and never demanding when he is asking, this is another thing Jonah has not done that the Brilliants said he would do. I am so thankful he has done so well.
Jo tolerated his first physical therapy session back in the unit seemingly well, however when they placed him back in bed he started throwing up. He threw-up so hard the portion of his NG feeding tube that sits in his upper intestine, came shooting out of his mouth. The other end of that tube was still securely fastened to his nose, and was now inserted through his nostril to the back of his nose and throat, in a u-shape, with the other end hanging out of his mouth. I swear, I can’t believe the things Jo has endured. The nurse pulled the tape from his nose, pulled the tube out of his nose and called the doctor to ask what he wanted them to do next.
July 13, 2016
I am working on the appeal for the insurance to keep Jo in the rehab unit. I have gotten all of the consults, History & Physicals, Op Reports and occupational, physical and speech therapy notes from the hospital and neuro-rehab unit, however I have not been successful in getting any records from the convalescent hospital. The insurance wants therapy notes, specifically. I tried calling the convalescent hospital yesterday afternoon to get in touch with the medical records person there to get the notes the insurance appeals process asks for. These records and a letter from a physician giving their recommendation for therapy for Jo is all I have left to gather in order to fax these off to the insurance company. I was told I needed to talk to the head therapist to get them. The phone call ended with the receptionist telling me she would give my message to the head therapist. I called first thing this morning and asked for the same thing. Again, I was told that the head therapist needed to get them and she wasn’t in yet. At 10:30 I drove to the convalescent hospital to see if I could speak directly to someone. I went to the reception desk and the girl called into the head therapist’s office for me. As I waited, I watched the managing nurse walk out of her office and down the hall towards the therapy room. The girl informed me there was no answer and said she must not be in yet. I then asked if I could talk to the managing nurse. The girl told me, as she looked toward the nurse’s office, that she had seen her in her office. I didn’t tell the girl that I had just watched her leave the office and walk down the hall. The girl called into the office and then told me there was no answer so she would page her. I went over and sat down in the lobby chair and waited. About 10 minutes later, the phone rang back at the girl’s desk and she listened to the speaker on the other end. As she hung up the phone she told me that the nurse manager was not in and she would give her my number to call me when she returned. I honestly couldn’t believe the ridiculousness of all of it. I asked the girl if she had my number and she informed me that it was on Jonah’s face sheet and I left. I never told her that I had watched the nurse leave her office.
On SelectMed’s one page appeal form there is a section for demographics and insurance ID, then there is a small space to describe the appeal and then tell them what you would like them to do. There was not enough room in their spaces to state all I wanted. Three and a quarter typed pages later, I finished writing my appeal. I was instructed that I needed to write the words, “EXPEDITED APPEAL” across the top of the page in order to get the insurance to look at it within 72 hours, instead of the usual 30 days. I wrote it on the SelectMed form and on the answer sheet I had attached. I only needed to edit my “dissertation”, gather the remaining notes and get the “Recommendation Letter” from the physiatrist physician not associated with the neuro-rehab unit, and I could send the whole file in.
When I got to the unit today, I was invited to meet with the social worker and case manager of the unit. We discussed the whole insurance issue and they asked me what I needed from them to help in the process. They told me they would work on getting the records we needed from the convalescent hospital and the recommendation letter from the physiatrist. We discussed having them fax the papers for me from the unit as soon as we had everything we needed. I told them I would go home, finish my appeal and bring all that I had back. Just as I was finishing the editing my appeal my computer SHUT DOWN!!! I just felt sick. I tried to get the computer to turn back on with no success. It was 3:50 and I knew I needed to be back at the unit by at least 4:30. I threw the computer in the car and raced up the street to my computer guru. Of course there was an accident in the middle lane, causing the traffic to slow to a crawl from rubber-necking. My computer guy couldn’t get my computer to turn on either, however he gave me a couple of options to get the file I needed. I opted for going back home and grabbing Jo’s Apple and exchanging my hard drive for his. I picked a different way to go back home, hoping to avoid the accident pile-up. I was back to the guru by 4:25. He worked quickly and I was back out the door by 4:40. I wanted to bag the whole freaking thing, but I pushed forward hoping I would get to the rehab in time to fax. I prayed the file came up and that I could get it to print. Once I opened the document, I saw that the last few changes had not been saved, so I fixed those and then printed. I got off the elevator of the unit at 5:15, and was too late!!! The social worker and case manager had gone home. My heart sank knowing I had delayed the process by a day. The receptionist at the desk of the unit said she would fax the info for me. I thanked her and left.
July 14, 2016
I got a phone call from the neuro-rehab social worker asking for Tom and I to come and go over his evaluation with her. Jonah has regressed by 12 points!! He is still in a “Rancho 6” level of cognitive function. His big hang-up is “Initiation”. He knows what to do; however he still must be cued. He has been in this level for several weeks. Before leaving the neuro unit he was hovering on the edge of Rancho 6 and 7. This is somewhat discouraging for me.
Next, we discussed the issues with the insurance and that because the diagnostic coding went from ICD-9 codes to ICD-10 codes last October, they have lost their “loop hole” for continuing care through a different benefit. The bottom line is that SelectMed can state that after these next 10 days of care in the neuro-unit, they have fulfilled their contractual obligation to us and do not have a means to continue care at this level within the contract dialog. I asked them to reconsider as they had made a huge investment in Jo to this point in his care and that it would be more cost, time, and resource effective to finish the care needed. I am just praying for a miracle. I know Dr. Physical Therapist has tried all he knows to do. The social worker also stated that she had left a message with the SelectMed’s case manager to see if she had received the appeal. It is now in the hands of the Lord.
Today is my oldest son’s 30th birthday; crazy, crazy how time flies!!! That was a wonderful day 30 years ago!! I had wanted to be a mommy since I was 3 years old and my dream had come true with my little swollen eyed, cone headed baby boy. Boy, were we “green” parents. We had no idea what we were doing! The month before he was born, it all of a sudden really hit me I was having a BABY! This little person was going to expect me to be everything to him, that my mom was to me, and I panicked, BIG time. I wanted to get a “take back” and wait to have the baby for a few more years. I drove over to my parent’s home, stomped up the walk in tears and found my mom to tell her I wasn’t ready to be a mom and I was freaking scared! She walked over to her big cushy rocker and invited me and my big belly to come sit on her lap while she rocked me back and forth, telling me it would all be okay. I was so excited and in love as I looked down at our new little boy I was holding. I turned to Tom and asked him if he would like to hold him and held him up to him. As Tom reached for him he said, “Come to Tom”. I said, “What did you just say??” Tom responded, “Daddy just sounds too weird”. I wanted to punch him after 16 hours of labor. When I called Zach to wish him a happy birthday today, I told him he better tell everyone I had him when I was 15; I’m NOT old enough to be his mother!!
July 17, 2016
A returned elder reported his mission today in church. What an amazing young man he has become. His ability to describe those things the spirit taught him while serving in Australia was astounding. He talked about learning to pray with real intent, that there is a difference between saying prayers and really talking to our Father in Heaven. Because of this experience with Jonah, his words were dear and close to my heart. “Cry out to Jesus”, Elder Holland said. I have had many opportunities to pray with real intent. These are sacred moments for me. As this young man ended his testimony, a friend got up and sang, “Be Still My Soul”. My heart was touched again as the words were used to heal me just days before as I cried out in pain to my Heavenly Father. Two more speakers and one quoted the talk by Elder Holland, which I have gone back to read and re-read so many times through this Jonah journey. Is there any of this that is coincidence? I think not; tender mercies!
After church, Jonah, Heather Saige and I watched, “Miracles From Heaven” together. What a great experience it was to watch Jo, watch this movie.
Jo said he is so excited about his surgery on Tuesday. We are all so hopeful for the new things having his skull back on will bring.
July 18, 2016
I got a text last week from a friend advising me to get an advocate from our insurance company to help us through the appeals process. She told me that they had one and she was immensely helpful in their appeals process when their son was going through a similar issue. When I asked my social worker on the unit how to go about getting an advocate she told me she would ask the caseworker at SelectMed who mine was and get back to me. My social worker also asked me if I had called the insurance to find out the status on my appeal and left me the direct line to the Appeals Unit at SelectMed.
I called the appeals unit and was sent straight to an answering machine telling me they would get back to me if I would leave my call back info. About an hour later I received a call from a woman telling me she was going to be my nurse advocate from SelectMed as she was the one, which had been following Jonah’s case since the beginning and was familiar with his many health issues. She asked how she could help me. I began to explain my appeal. Part way through my description, she politely told me something similar to, “Yes, sometimes there are issues with the care at one facility or another” and that she had nothing to do with the appeal process; that was a completely different department. This baffled me as, I had just been told by my friend, who has the exact same insurance as mine, and had just been through a similar experience as us a year and a half ago, that her advocate helped her through the appeals process, but mine couldn’t help me. My advocate then told me that it has been many years since the nurse advocate has been authorized to help with the appeals, explaining that the change was to help improve a more equal across-the-board treatment level for their clients. I then asked her, “Why do I need you then?” “What do you advocate for me . . . for?” Her answer was that she would help me find a doctor or a facility Jo might need or answer medical questions I might have. I then asked her, “Where are you from?” She answered she lived in northern Utah. I asked her, “Have you ever been to any of the facilities you are recommending me to put my son in?” She answered that she hadn’t. I then asked, “Then how can you recommend anything down here to me?” “How can you adequately advocate for me?” She was set back a little and stated that there was a facility up in northern Utah that was a good facility for Jonah’s type of care and is a convalescent hospital that fits the next level of care codes. She went on to say that if Jonah is stable enough, maybe he could go up there. I honestly could not believe what I was hearing. I told her that I still have four other younger siblings in the home. I could not up and leave for 40 days!!!
If there is not an adequate facility, or the type of doctor you need within their network, within a 50 mile (I’m just pulling that number out of the air) radius, then the insurance company surely must make an exception to help the patient get the care they need. I would think that since the neuro rehab is the only facility equipped and manned with what Jo needs in order to reach his fullest potential in the shortest amount of time, with least amount of setbacks, this should be considered. She had nothing more helpful to say, so I thanked her and hung up.
I had to be at Red Rock for Independent Living at 1:00 PM today to fill out a contract to receive medical equipment for Jonah. This organization allows clients to use their equipment for free as interim equipment. Sometimes there is a lag in the time between discharge and when the insurance can get the equipment to you or you only need the equipment for a short period of time, through healing. They had an electric chair, a transition chair, a hospital bed and mattress set-aside for Jo. It made me physically sick looking at all of the equipment and listening to the man explain how to use it. Every once in a while the reality of what we are living punches me in the face. This was one of those moments.
When I got to Jonah’s unit to have dinner with him I approached Dr. Physical Therapist to explain to him what my experience with the insurance “nurse advocate” was like today. He then explained to me that he had offered to the insurance company that the neuro rehab would keep Jo in the neuro rehab unit for the same cost as the convalescent hospital and the insurance company said, “NO” because of a conflict in codes and “some other things”, which have not been explained to me. So, a patient is being subject to sub-standard and inadequate level of care because the translation of a code could not be made to fit anymore. Is the patient’s superlative care most important? Is this considered “Best Practice”?
Dr. Physical Therapist told me he had little hope that the insurance company would budge and then the social worker on the neuro floor called me over to her office and asked me which facility I would like Jonah moved to, should the appeal not come out in our favor . . .la-dee-dah . . . because we need a plan. . . . dee dah. She grabs a form as she is saying, “Just sign this approval for me to send Jo’s information over to the new facility.” “Great, thanks,” and her smile says, “job done and you’re outta here”. . . . “Have a great evening!” I told her I had already contacted the new facility and told them we would be sending Jo to them should our appeal be denied and just walked out of her office without hearing another word she was saying. What in the heck is wrong with me? I have got to learn that nobody cares, like I do, about my kid!! I keep forgetting this and it is so much harder on me when I have thought that they had and I realize that Jo is just a patient that is rolled in and then out. He is not going to get treatment just because someone cares or doesn’t care. It is all about policies, contracts, and money. Gosh dang, Heather . . . remember, remember, REMEMBER!!!
Just one more thought; SelectMed is a subsidiary of Intermountain Healthcare, which is the company that owns the hospital and every single doctor and nurse Jonah is being cared for by. What in the heck is going on here? We need some competition in this town. I am pooped out emotionally right now. I know I am toxic when I am at this furious and despondent point. I want to mow everyone over with punching bags on; instead I head to my car and cry it out before I have to move on to the next kid and need.
We ended our day in Jonah’s room giving him a blessing for the surgery he is having in the morning. Jo is getting his skull back on!!! He will be picked up from the neuro-rehab and taken to the main hospital. After surgery he will be taken to the ICU to be monitored for about 24 hours and then he will be released back to the neuro rehab to finish out his last three days there. My heart is so heavy tonight. I’m thrilled for Jo to have his skull back and scared out of my mind at what the next facility will be like for this boy!! I LOVE MY BOY!!! #JustWakeUp Jonah