ENG link
http://www.tchain.com/otoneurology/testing/engrot.html
July 31, 2006
July 28, 2006
Tuesday through Thursday
On Tuesday, Dr. Beacham was doing emergency surgery. So we got Dr. Bols. Nice guy. But neither we nor he knew why we were there. Kif's discharge sheet just said to call the neurosurgery clinic for a follow up. So, the appt. with neurosurgery was brief. Dr. Bols tested Kif's reflexes and asked me how he was. I said he was okay, what else could I say, I didn't even know why we there.
On Wednesday, Dr. Blei chatted with us for a long time. He really didn't say anything at all, just talked in circles. It was annoying, I wanted to get out of there fast.
Thursday, we went to CCD, the local Community College, to just walk around on campus. Kif has since shown an interest in going back to school. So we sent a request for a copy of his GED.
Everyday seems painful for him, and I am wracking my brain just trying to keep us both upbeat. I'm not sleeping at night, and I can't drink enough coffee in the morning. I feel completely discombobulated and constantly distracted.
This a.m. I tried to schedule an outpatient therapy appt. Here's how it went:
1. I called the centralized appt. telephone number like Dr. Blei told me to. They tell me they aren't scheduling appts for outpatient therapy until August 1. So, they give me the direct number of the clinic to call.
2. I call the clinic directly, where I wait, and wait, patiently. The nurse I talk to then tells me she doesn't see the Dr.'s referral for therapy in the computer. This means that Dr. Blei didn't put in the referral yet. So, I call his direct number. No answer. No voice mail. So I'll have to call on Monday to try and schedule the appt.
You'd think making one therapy appointment wouldn't be so difficult.
Our next appt. is with ENT (Ear Nose Throat) clinic on Tuesday a.m.
July 25, 2006
Recommended book: I'll Carry the Fork
Here's a book I found on Amazon re: traumatic brain injuries:
I'll Carry the Fork
July 11, 2006
Kif's week out of the hospital
It's been a good week with Kif.
He gets up around 7am and has a morning routine: teeth brushing, bath, shaving (with electric shaver), and eats breakfast. Then he will lay down, listen to music, or fall back asleep.
I've taken him with me to work, where he watches movies on his DVD player. He's remembering things from day to day, and following through on a given task. He almost really doesn't need supervision, in my opinion. The only times that are really important to watch him is when he's getting in and out of the bathtub, and making sure he's next to you on walks.
We have conversations about Mom and Dad, how "wobbly" he still feels when he's standing or walking.
He definitely has an affinity for suspense/action movies, which surprises me.
This a.m. we see the opthamologist-Dr. Favrowski(?). It's a follow up appt, and we're going to talk about getting a new eyeglass prescription.
July 07, 2006
Kif rests at Lucille's home
The first night at Lucille's went okay. He woke up thinking he was at Cynthe's house (another family friend). Sometime early in the a.m. Kif needed to use the bathroom. It was dark and there weren't any lights, so he tried several doors before locking himself in the garage. Later, Lucille went out to the garage, and there was Kif, in the dark, in the garage. He gave her such a start. I could hear the conversation from my bed and heard Kif's nervous laughter/explanation that he was trying to find the bathroom. He said he was scared; he was afraid he was going to set off the alarm for the house if he moved too much.
This a.m. went okay. Kif decided to take a shower by himself this morning. He didn't scald himself like I had initially imagined, and he was fine. I was so dead tired, I hadn't heard him get up.
Other than these incidents, all is going really well. We're taking walks every morning and trying to create a structured daily program for him.
July 03, 2006
Friday, Saturday, Sunday...
Friday: Met with Kendra, social worker; Dr. Weiler, Kif's doctor, and Emy, speech therapist. I was worried because Kendra called me Thursday sounding like she wanted me to pick him up. When I explained I couldn't provide the kind of supervision he needed because of a job, she sounded surprised, as if I hadn't mentioned this before. So, Friday a.m, I went down to the hospital to get my questions answered. Kendra couldn't definitively answer my questions, so luckily Dr. Weiler, who Id' never met, happened to be around. She answered all my questions, which was a relief. For instance, I thought they were going to discharge my brother and expect me to know how to care for him.
Kif is allowed to leave the hospital for six hours at a time on weekends, something I didn't fully understand before. He can fly with me when I go home, and the doctors will provide a letter saying he's recently suffered a head injury.
After I got my questions answered, Kif had therapy appointments, so I left and ran errands. I picked up some pizza for Kif, his roommate and the nurses. Told Kif I'd take him out for the next day.
Saturday: Kif was able to negotiate his way around, without needing much guidance. We went out to lunch at Noodles, He needed help finding the restroom, but I'm not sure how much of that was poor eyesight.
We went out for Bonnie Brae ice cream and then visited Scott and Carole at their house. We stopped by Tattered Cover, Confluence Park and then REI (for a bathroom break).
Sunday: Kif really, really wanted to see Superman Returns. I wasn't sure he was ready to see an action movie, but I didn't want to discount his ability to handle it, so we went. At first he wanted to see the IMAX version, but I told him I thought his head would explode from so much overwhelming stimulation. He just laughed.
We got to the movie way too early. His attention span can only last so long, so by the time we got through the pre-movie entertainment, the commercials and the previews, he was already looking at his watch and closing his eyes. We left an hour into the movie. He was exhausted and I took him "home" back to the hospital.
June 30, 2006
Notes...from talking to Sierra
Talked to Sierra Robinson today re: Medicaid. Chamberlin Edmonds helped with three applications:
1) Medicaid, which includes Title 16, which is available for those who are low-income and meet other requirements; also Title II, which is having worked enough to receive Title II, whatever that is.
2). Social Security: this can be transferred to local CA.
3). Longterm care: to help pay for his 30 day or more stay in the hospital.
Oupatient care is only approved if SS is approved.
June 27, 2006
he's ready to be discharged!
My brother is ready to be discharged. And I'm sooo happy. Kendra, the social worker, called to let me know right as I started my 7 hours of work this afternoon. [I'm so glad he's getting better!!!!]
While, my brother can be discharged, his "team" of doctors and nurses told me he would need to be supervised still. I need to talk to them on Wednesday, tomorrow, to see how much supervision he needs. I don't want to bring him into anyone's home without knowing how much supervision he needs. And since we're still waiting for Medicaid to be approved, our options are limited.
His short term memory is still inconsistent. Some days he remembers more. But more likely than not, the later it is in the day, the more likely his conversations make less sense.
Yesterday, Monday, I called Sonia at Chamberlain Edmonds. She said the letter we got from the Social Security Administration was "nothing". The header of the letter was "[my brother] is not eligible for SSI".
June 22, 2006
our version of "Memento"
On Tuesday, Kendra called back, she gave me the number to Learning Services and said I could call for a tour. She doesn't have a discharge date for him.
Wednesday, early, early. a.m, he called Mom, Dad and me at 4:30 a.m. on his cell phone. Not understanding that this really wasn't a good time to call. I have since taken the cell phone away.
My brother's short-term memory and judgement are still his biggest deficits.
Also, his judgement is still skewed. I learned this when he wanted to shave with a new razor. He clearly knows how to shave, but he rushes the razor in short bursts over his face instead of gently working the razor. We walked out of the bathroom with bloody nicks all over his face. He seems to be in a hurry to get back to anything resembling normalcy.
If you've ever seen the movie "Memento", that is the extreme version of what we're working with.
Today, we're supposed to go out and get a haircut. His glasses should also be here any day now.
June 19, 2006
more cell phone drama
No word back from Kendra, the social worker today.
When I saw Kif today, he seemed more annoyed and short on patience, even though they moved him into a larger room. He was "stressing out" over his phone. Since the battery died, he couldn't call anyone. He keeps going through the contacts and/or calling Mom or Dad every so often. So I had to take his cell phone to recharge it. We walked downstairs to the cafeteria, and he seemed really quiet while we had a snack. I only spent about an hour with him before he hung out with Don, the physical therapist.
Gloria, the nurse's aid, was still there helping him. He seems to get along with her.
When I called him during my break at work this evening he was really frustrated, I could hear it in his voice and he just didn't know what to do. He kept saying he wanted to get out of there and he hated it there. It was heartbreaking. The emotional side of his kind of recovery is something I wasn't prepared for.
Whale Rider
Yesterday, Sunday, Kif and I watched the first 30 minutes of Whale Rider. He had just eaten lunch so he fell asleep. When he woke up he was cold, put on his jacket and wanted to go walking.
He was asking staff for a light, like he was going to smoke a cigarette. I've been telling him he doesn't smoke.
Don the therapist mentioned a possible haircut on Tuesday as an outing. I talked to Gloria about Joseph's way of joking around with Kif.
Kendra called this a.m. to just check in. I called her back and asked about why they keep moving him and if Learning Services would be an option.
June 17, 2006
"Let's go..."
They moved Kif into the room next door, closer to the "rehab dining room". I'm not sure why, haven't asked. He seemed to be in good spirits, joking around when Emy, the speech therapist, said they were just talking about me. He seems to laugh real easily lately.
He had just finished therapy with Emy, so we had an hour and a half before his next appointment with Bethany, the Occupational Therapist.
We went outside and sat near the circle. He still wasn't following directions once he got out of the elevator, but seemed to orientate himself better. When we start down, I gave him the Cran-Grape juice Mom wanted me to make sure he had, since he likes it so much. He mentioned his right side feels out of whack, like he got "socked". I told him it was probably nerve damage and he seemed to agree.
We walked around the hospital for a little while, his balance has improved and he's not so wobbly. I asked him a question and he said "Kinda, sorta". Then he realized, "I say that a lot". I assured him, it's a good answer for just about everything.
Once upstairs, I gave him his cell phone and he called Dad and talked with him for awhile. We called Mom too. We did laps around the floor, laid down on his bed for a minute, but then he always says "Let's go..." and if you ask him "Where?", he says "I don't know." So we just walk, and walk, and walk most of the time.
His short term memory's a little better and he remembers going out to Jamba Juice yesterday, but he remembers it as me taking him to Jamba Juice and not the therapists taking him out.
One day at a time.....
June 16, 2006
Outing to Jamba Juice
Kif and two other patients had an outing from the hospital yesterday. Bethany, the Occupational Therapist, went with Kif. Still having trouble following directions like "Turn right" or "Turn left". It's like he's so distracted with everything else around him. He must still be having trouble orientating himself.
When we got to Jamba Juice, Bethany showed him the menu, but he wasn't really interested. He randomly picked out a Banana Berry and went inside to order it, after much prodding. Dad called on my cell phone and he talked to Kif for a little while. He was more withdrawn and quiet the rest of the time. He mentioned he wanted to see his kids.
Bethany was asking him about what kind of work he did before he came to the hospital. He told her he did construction and Bethany asked what kind. She rattled off different types of construction, and Kif said "scaffolding".
The most striking thing about the outing was Kif's understanding of what had happened to him. One of the other patients asked me what had happened to him. Kif overheard me saying it was a fight, and said "I lost". We sat there a little stunned and the therapist tried to comfort him saying he was in the hospital and recovering.
I didn't get to stay long, had to go work.
June 14, 2006
New glasses are ordered
Went to Kif's room early this afternoon and he wasn't there. The red-headed nurse said he was with Emy the speech therapist. He'll be there until 2pm she says.
Found out Kif had had a shower and had already been downstairs to get a prescription for some glasses with the staff. [We don't know where he was living at, so he doesn't have any glasses right now].
After he returned from speech therapy, we pointed out that Will and Michelle had sent some really beautiful flowers. That was really nice. We explained to Kif that Will was Karl's brother. Not sure if Kif really understood, but he said "Oh" and smiled.
Taking Kif outside hasn't been easy. He gets distracted and sometimes agitated by all the outside sights, sounds and people. When he's overwhelmed he tends to wander off without direction. But today he generally went with us with little direction. We still had to hold his hand. Sitting in the small optical services room was difficult though. Kif got tired and he started to fall asleep; that was better than him get agitated and wanting to leave. We had to wait at least half and hour and the many small children made it difficult to be patient.
Eventually we picked out a pair with Kif and I had to get going to work. When I called Kif this evening, he was chilling, listening to the Sacred Spirit CD his Dad gave him. Mom mentioned that in the evening he starts hoarding his clothes, putting multiple shirts on. Let's hope this is a phase.
Kif's daily habits
Kif has some peculiar habits right now. He lays down for a couple minutes, gets up, puts on his shoes, wants to go somewhere, but then gets tired and wants to go back to bed.
Mom says he also likes to hide his shoes, and pillow underneath his blanket. As though he's protecting them.
He also says things that we know aren't true. For example, when I called him from work, he said Mom got really mad and left because Kif was being messy. When I called back, my mom laughed about it and said she was taking a break. But as far as I read, you're not supposed to act surprised or contradict/argue with a head-injured person.
June 13, 2006
Talked to Dr. Blei today.....
Asked to speak to Dr. Blei, he's the attending physician.
He and I went out and had a nice discussion about brain injury recovery. It must have been at least a 30 minute discussion. Here are my notes:
Four month benchmark will be a greater measure as to what Kif will need. He advised against making any big decisions during the four month period. "Take one day at a time".
Schedules are very important for him right now.
Because it's a front lobal injury, we look for amplification of basal personality, how he sets priorities. The front lobal area, is the "executive" area of the brain.
Outpatient therapy would be approx. two to three times a week. [Can only happen once Medicaid goes through].
Family involvement important now. Familiar environment is important.
Even though my brother has a history of depression, the neurochemicals in his brain are different right now. And since SSRIs affect the brain's chemistry, not a good idea to further affect that. Dr. Blei said he looks for the patient rehashing the same issues over and over again or become withdrawn/vegetative to determine mental health.
Can't do "rehab to rehab", regardless of Medicaid.
GCS=15 right now
Rancho Scale=5.6 right now. Level 7 would be ability to understand more.
Remember: Recovery slows down.
"Neuroplasticity phase": taking on daily responsibilties, support team starts stressing/exercising his deficits/weaknesses. Currently, his deficiets are judgement calls, attention span.
Need to ask about Medicaid rules at Learning Services.
Family interaction not as important as moving towards independence.
After our discussion, I asked Nurse Tracy what medicines he was receiving, and she told me Trazadone for sleeping, and Colace for balance. Both, twice a day.
LM with Sonia, Chamberlin Edmonds, re: how would we find out when Medicaid was approved.
Medicaid pending
Kendra called back while we were on our way to the hospital. She's the Social Worker. Despite what Dr. Blei said, Kif can stay there until medicaid is approved. Because he needs 24/7 care. Need to talk to Dr. Blei when I get to the hospital. All she wanted to do was placate me and be condescending.
What are our options once Medicaid is approved?
What does he need after rehab is over?
The staff here don't seem to understand that when a family experiences an incident like this that minutes feel like hours and hours seem like days.
Kif's current status medically
I created a weblog to update the progress on my brother, Kiffer, who hit his head in a fight and has suffered moderate to severe head injuries. He's currently in rehab, awaiting medicaid approval. He's up and talking, though is often confused and disoriented: he knows something's not right, and he doesn't always remember why he's in the hospital. When he talks, he tends to repeat himself.
He's doing speech therapy, occupational therapy, and physical therapy in the mornings. Dr. Blei wants to see him out of acute rehab in a couple of weeks. But we're still waiting for Medicaid to be approved. So I'm not sure what we're going to do in between the time they want to discharge him and when Medicaid is approved.
I heard that once Medicaid is approved, it makes it easier to get approved for Medicaid in other states. Need to check with someone about that.
Social Security application
I talked to Sonia from Chamberlain Edmonds this a.m. She said Social Security called requesting more information. It seems they thought the N. Carolina address my mom listed, was his, not hers. She said they would list the hospital as Kif's address. Sonia said they had requested a "PD Decision" because of Kif's disability. A "PD Decision" is usually a quicker way to get approved. She also asked for a copy of the police report, so I referred her to Detective Bedard and gave her the case number.
Questions????
What is the difference between ABI and TBI?
How is his mental impairment measured?
How do we know rehab has done all it can do?
What about outpatient therapy--can Kif get that @ DGH? What about at Craig?
Does DGH offer some kind of community re-entry?
What is Kif's rating on the Glasgow Outcome Scale?
Is guardianship appropriate?
What would a long road trip be like with him?
My brother called this a.m.
I told him I loved him.
June 06, 2006
June 6, 2006, Tuesday
I'm so tired. Getting emotionally tired and I feel like I’m a wreck.
It's hard for me to keep track of what’s going on.
Kif had three therapists stop by yesterday, Monday. 1. Speech therapist, 2. Rehab doctor. Doctor Kappas. 3. Occupational therapist.
Acute therapy for at least two weeks. We’re waiting for Medicaid to be approved before he can be moved to another rehab center. He probably wont be moved to the rehab center at DHMC until the end of this week.
June 03, 2006
June 3, 2006 Saturday
We took Mom to Watercourse, after Karl and I spent Friday night with Kif; went to Panera (where I did some research on brain injuries), People’s Fair, Denver Public Library.
Mom, Karl and I went out for pizza, and then Target shopping. Karl and I bought Kif this pocket Simon game and a Doddle board to play with.
In the evening, they moved Kif from room 365 to 341.
June 02, 2006
June 2, 2006 Sunday
Dad spent the night with Kif in the hospital. Karl and I dropped Mom off so we could help Lucille buy a computer. We picked up Mom and went to a late lunch with Kif resting after his wheelchair ride.
Kif walked a little, went for a wheelchair ride, sat on the edge of his bed smiling and swinging his legs. He went for a little walk later in the afternoon, played with the buckle on the belt we used for walking with him, he went to the bathroom. Took short naps, talked to me on the phone when I was away, talked to his dad on the phone.
Karl and I left around 7:30pm. We came home and had chili, chatted with Lucille.
I set up Lucille’s computer and then went to bed. It was really nice because Lucille turned on the AC and we slept really well.
June 01, 2006
June 1, 2006 Friday
Hung out with Kif while he was in room 365. Sandra was his sitter. Found out Kif could speak Spanish. Dad didn’t want to go to dinner with us. I lost my cell phone; Karl and I went to The Market for lunch, super hot during the day time. No surgery planned for Kif because the lumbar drain came out during the night. Dad blamed the nurse for falling asleep, but no one knows what really happened.
I left a message with Maryam. The Human Rights Awards were that evening, thought about the GX staff and their evening. Wish I could have been there.
We came back to Lucille’s, had buffalo chili and went to spend the night with Kif. He had Marek as his nurse for the evening.
May 31, 2006
May 31, 2006 Thursday
Karl and I dropped Mom off at the hospital, got some Starbucks and went to the police station at 1331 Cherokee Street. I picked up Kif’s Colorado ID, and other personal belongings: cigarettes, lighter, ear plugs, cell phone battery. This was the one day off I took
We went to Watercourse for lunch, but afterwards, I got real bad stomach cramps, and so we went home where I took a nap. Karl made buffalo chili while I went to pick up Mom and bring her back. The buffalo chili was amazing.
May 29, 2006
May 29, 2006 Tuesday
Surgery cancelled. Supposedly because they didn’t stop the feedings in time for the surgery. It seemed late in the day anyway.
May 28, 2006
May 28, 2006 Monday
Today’s Memorial Day. We spent it with Kiffer, who was more awake. His trach was capped off, but not fully removed. That was a surprise; a surprise, but a good one.
May 26, 2006
May 26, 2006 Friday
I think I’m going to kill someone if I hear that hospital monitor go off one more time.
This whole situation is getting really annoying also. A positive point: Kif isn’t leaking right now, even after he pulled out the lumbar shunt.
Waiting sucks. It really, really sucks.
We have three more full days to endure to see if they’re even going to do surgery on him. THAT is the hardest. And that’s just to fix the leak, that doesn’t even include rehab. Hopefully I’ve misunderstood what the doctors have told my mom.
May 25, 2006
May 25, 2006 Thursday
I worry that all this stress may be for naught. I worry that Kif will not change his unhealthy habits and tenuous lifestyle. All I want is for him to be happy, and healthy. I can’t tell him what to do any more, he’s 29 years old now. All I can do is offer him advice, give him support and love him unconditionally.
When I first got the call from Mom about Kif’s head injury, an old would opened up again. I love my brother and it hurts to see him incapacitated, and so vulnerable. (I say this even though I’m making him listen to Jon Kabat-Zinn on my iPod). My hands, thighs and stomach all filled up with butterflies. I didn’t want to feel the butterflies. I wanted to be by his side, to let him know I still love him no matter what happened.