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[i-will-keep-fighting]

Acute rehab 2 week 3

Acute Rehab number 2 week three

So we’ve been at the second acute rehab for three weeks. The doctor wants to keep him the maximum amounts of time so that would be 37 days,insurance is trying to kick him out. So we’ll see who wins.

He’s doing well therapy wise. He’s walking well with a hemi walker by himself. He’s doing stairs with mod assist. His hand is giving him a lot of trouble. They tried to take him off his muscle relaxer and tone helper medication and the poor man couldn’t even move his hand a little it was so swollen and painful you couldn’t even touch him.

Speech is still very slow. He has many more words you can prompt him with but he still can’t say anything spontaneously. It’s just hard. I worry what if something happens and he’s on his own because he can’t say anything.

Our lawyer dropped us. They don’t think because of our unique living situation and dads extreme issues they don’t think then can help anymore. So I need to find a new lawyer.

No one had been able to tell me what to do once he runs out of days. How do I get an aid? How do I arrange for PT, OT and speech to come to the house? How do I even find them?

Update

PT: can walk with just a hemi walker, gets up min assist

OT: hand and fingers move a little. Got a 90 degree knife so he can cut his food one handed

Speech: can do level 5 phrases. Still can’t speech unprompted

[i-will-keep-fighting]

Two month update

It’s been two months since my father had his stroke. Some good news some mixed news some bad news.

I was able to get dad into another acute rehab (I called and was rejected from 7 places but number 8 took us) this is our last stop I am out of insurance days after 37 days I have no more rabbits I can pull out of my hat after this. He has to go home after this whether he’s ready or not.

So far acute rehab number two is alright. I really like the physical therapists and OT. I haven’t met speech yet. The place is much more of a hospital setting so Dads got a lot less space and he’s way more restricted, not allowed to leave the floor, not allowed to go out side etc so he’s a little annoyed but what can you do. Beggars can’t be choosers.

I’m still trying to get him Medicaid but my phone call with the Medicaid office didn’t go so well. They refused to tell me what Medicaid entails. I just wanted to know if he could get therapy and if so how many sessions. Apparently you’re not allowed to know that. So still working on that. But I’m also going to try and get him a second private insurance I think that might be my better bet for more PT OT and speech sessions. I’m working with a lawyer who’s job is to get people Medicaid. They couldn’t tell me what you get with Medicaid. So it’s a giant mystery.

I’ve started fitting the house for when he gets home: stair lift, shower bars etc (do you know that’s not covered by instance?)

Current statutes

PT: able to walk min assist. Car transfers and bed transfers min assist. Stairs can do one to two with two people major assist.

OT: we had small finger movement and now have reliable arm movement it’s weak but there.

Speech: still has to be prompted but now every word has to be said with him can start him off. Can do simple math in his head and write his name.

Still praying for a miracle with insurance and Medicaid so he can actually get the physical occupational and speech therapy that he needs. But I’m not holding my breath. The heath care system is an abomination.

[i-will-keep-fighting]

Insurance interlude

So my father has private insurance. He gets it through my mother’s job. It’s good insurance they pay for the top tier. And yet we’re in trouble.

This is what the insurance allows for

Acute rehab : 60 days per year

Subacute rehab: 30 days per year

In house therapy sessions: 40 per year

Out patient physical therapy: 60 per year

So my father will run out of subacute rehab time June 27th and it costs $750 a day to keep him there, not including therapy. It’s $33 per 15 minutes and he needs OT, PT, and Speech and he should have minimum 45 minutes of each of them. He’s not ready to come home. He’s made great progress but they told us he needs to be monitored 24/7. He needs help transferring from wheel chair to anywhere. He can’t get in and out of anywhere or move is wheel chair and there are ten steps to get in and out of the house. But the rehab just sort of shrugged and told us oh well your problem now.

Solution #1 trying to get dad Medicaid.

He doesn’t qualify right now. He owns two properties. It doesn’t matter that he doesnt have much money in his bank account nor that will not be working for a long time. He doesn’t qualify. So now I have to meet with a lawyer to get everything transferred out of his name. But the earliest this will happen is August 1st.

Solution #2 get him transferred back to acute rehab (I have 37 days left there) but that involves getting the doctor therapists and acute rehab to all agree that that is warranted. That’s currently in the works.

He’s already been denied disability because apparently you can’t get disability if you work for yourself. Doesn’t matter that her brought ten years of taxes from him and his business. Just flat out denied.

So long story short: private insurance is a sess pit of suck, the government sucks, and the American health care system is severely lacking.

[i-will-keep-fighting]

Subacute Rehab Week Two

So week two of subacute rehab was a mixed bag. We had a meeting with the heads of the departments to evaluate my dads progress. According to them he seems to have made no progress and have gone backwards in PT and OT. They claimed his arm isn’t moving at all but it was at acute rehab. I spent ten minutes working on his arm and had it moving, they had ten days. His insurance will cover thirty days here after that they kick him out whether he can walk talk or even get out of his chair it doesn’t matter thirty days they pull the plug and kick him out because insurance should of course dictate his care not the doctors. He’s already used ten days and had minimal progress I know he won’t be ready to come home at day thirty.

PT: can walk 50 yards with a hemiwalker with minimal assistance

OT: working on transfers and estim. His arm is hit and miss if it moves or not

Speech: maybe a few more words

[i-will-keep-fighting]

Acute Rehab Week Four and Subacute Week One

So week four of acute rehab and week one of subacute rehab. I’m not going to lie this has been a rough week. We had to leave the acute rehab. He was doing so well here. He was ahead of schedule and was happy and animated and motivated to work. He wanted extra PT and extra speech and anything they would give him he’d do.

He was moved to subacute rehab. Let me tell you a step down does not accurately describe this. It’s like a giant fall off a cliff down. The nurses ignore him. Once he range the call bell and yelled for help for twenty minutes and no one came in to his room. He has multiple times gotten himself out of his wheel chair and put himself into bed. No one has noticed or check on him. What if he falls? They won’t let him use his communication tray so he can’t let people know his needs and his right arm is hanging limp at his side instead of sitting up supported. He’s become very withdrawn.

PT: no change

OT: no change

Speech: honestly I think he’s gotten worse and regressed.

I feel very lost right now.

[i-will-keep-fighting]

Acute Rehab Week Three

So week three of acute rehab was interesting. I love this place and I honestly don’t want to leave, they have been giving him an extra hour of speech every day and he’s doing well. He’s responding really well to the E stim on his arm and has had some slight hand movement and the biggest news he woke up one day and he could lift his leg! He can how lift his leg up and bend it. It’s amazing.

I want to give some words of advice when picking a subacute rehab because I have some buyer beware. We had to pick a subacute rehab we narrowed it down to two based off of distance and if they had speech therapy available every day and nurse rating. So we toured both and they seemed pretty equal but still I felt uneasy so I called them both. Rehab #1 told me clearly that he would have therapy 2 hours a day and he would be monitored every hour and when I had questions about the therapy that admissions could not answer they transferred me to therapy so I spoke to PT and to speech therapy. Therapy #2 told me that he would receive therapy “based off of his insurance” when I told them what insurance he had I was still not told how much therapy he had. (This was red flag number one) so I then asked to be transferred to the therapists to talk about what therapy he would receive I was given the receptionist she was unfamiliar with the terms aphasia and apraxia so after she could not answer my questions she transferred me to the speech therapist. I asked how available digital modalities like iPads would be to him because he is doing very well with them and she said only her personal one because they don’t have them there. I asked what they did with extreme aphasia and apraxia patients and she didn’t answer so I asked again and reiterated that right now my father really can not speak so what’s available to him and she answered she’s not sure as there are no patients with his extreme issues and he would be the first patients with his issues she would be treating. So I politely ended the conversation and chose rehab #1 but if I had not been pushy if I had not asked to speak to the therapist I could have very easily ended up at rehab #2. So if anyone is in my shoes don’t be afraid so ask to speak to therapy so ask the hard questions and demand answers.

I finally have my car back on the road $1200 later.

So updates

PT: he can move his leg independently he walked upright with a four point wide cane with someone holding his hips but nothing else. His transfers to and from the chair and pretty good.

OT: slight hand movement and slight shoulder movement. Bed transfers are better. Turning is hard.

Speech: when he works with his normal therapist speech is pretty good “I want a drink of water” “It’s time to go” “I want to use the bathroom” are pretty reliable. But outside of therapy I can’t get much. I can get “hi” and “buy” and “drink” if I push. We made a communication board for when he move so he can ask for things. And he’s great with the three iPad apps

Next week we move to subacute. He seems like he’s very awake and aware even more now he always looks for me and reaches for me it’s hard to leave for work for long periods of time.

[i-will-keep-fighting]

Acute Rehab Week Two

So week two of acute rehab post stroke has had its ups and downs. He has its offices release date from acute rehab and he will then move to subacute rehab (May 29). It’s all a game with insurance. We met with the doctor, she thinks eventually he will walk again (and that it will be unaided with out a cane) and that he will speak but it will take a year before we can understand him and he needs extensive speech therapy. As for his hand we don’t know yet. But the advisement is that he should be in a rehab hospital for about four months. But guess what insurance will only approve six more weeks and then the kick him out regardless of the fact that he needs more therapy and home he goes. Then suddenly instead of three hours of therapy a day he gets half an hour three times a week and who knows how long they let him have that. Insurance is criminal in this country.

This week updates

Speech: not much change he has good days where he can say sentences, they added a few new words. And he had bad days where he can’t get much out. He has gotten much better at the “mm” noise which is hard for him

PT: he can consistently sit and stand almost unaided. Walking is getting better

OT: he moved his arm for the first time he pulled it towards himself consistently.

Life update: on my way home from the hospital I hit a curb and I popped both tires on my passenger side. I had to be towed and buy four new tires. Unfortunately my car is still undrivable because I cracked the rims. I haven’t found rims for the car yet. That was hard. My father was always the one who would rescue me from the side of the road when something like this would happen and now, trying to figure it out on my own, it’s hard.

He’s making great progress. They says he’s one of the most motivated patients they’ve had. I just hope he makes enough progress before insurance runs out and I can stay sane and in one piece.

[i-will-keep-fighting]

Acute Rehab Week One

We’ve spent one week in the rehab hospital and dad has made tremendous progress.

When we first got here he could not get himself upright he couldn’t hold himself upright and the words that came out of his mouth were called “unintentional slips” ie the brain just does it not him. They started him on intense Physical therapy, occupational therapy and speech therapy. “Damn it” is his favorite unintentional slip. If you’re curious swear words are kept on their own part of the brain so they appear unaffected after the stroke.

He started out small. But by the end of the week:

Speech: can count to ten (out loud), can say my name and moms and say “I want a cup of water, I want a drink” “yankees” “I want to go to the bathroom” he excelled at reading comprehension. He’s not good at object reasoning. Ask the man to point to his knee and all bets are off. But he has both apraxia and aphasia so it makes it hard.

OT: was matching number blocks, could categorize in four categories: transport, cloths, food, animals.

PT: rode the bike for 2 miles and could walk with some aid the full bar and Sunday he used a cane and walked almost unaided. I almost cried at that. He’s got some muscle movement in his leg and hip. Nothing in his arm and hand or foot yet. But it’s a marathon not a sprint it takes time.

The good thing is he’s in there. He rolls his eyes at me when I can’t get his wheel chair to work. He wonders what I’m going to eat for dinner and gets mad when it’s Chinese food for the fourth time (he does all the cooking), he jams out to Led Zeppelin when I brought him my iPod to listen to. This is acute rehab so things move fast. The main downside is he only gets to be here for four weeks then the insurance stops paying for it and he has to go to subacute rehab which isn’t three hours of therapy a day it’s less. And even subacute he only gets that for a month after that I don’t know what he gets. But for now we’re living one day at a time. He’s made a lot of progress in one week who knows what tomorrow will bring.

[i-will-keep-fighting]

ICU Stay

My father would spend over a week in the ICU at a university hospital when he first got there he would just yell and babble incoherently all day and night. His right side was completely paralyzed. Every day he would have a CT to assess brain swelling and he was hooked up to every monitor imaginable. By day three he had quieted and he had become much more aware. We’d worked out our own language “squeeze once for yes” a world of conversations can be worked out with “squeeze once for yes”. Everyone wanted to know how he was but what can you say? He’s stable no change. We’re still not sure if he’ll pull through. Over and over. People kept thinking he’d made some sort of miraculous recovery because I’d say things like “we talked about how I need to get the gas cut soon and hire that guy for it” or “he’s mad because I don’t want to go to that concert I have tickets for” people don’t understand how I discussed these things with a man who right how’s conversations consist of facial expressions (incredibly expressive ones at that) and “squeeze once for yes”. It’s simple, I’ve known the man for 30 years, we speak our own language.

Day three he was allowed to eat on his own and I realized with some (major) supervision he could feed himself (that was a good day). Day four we had a set back dads brain swelled a little, 12mm past midline. And he went on a sodium drip. For three days we watched the swelling. Day six we realized he could read the dinner menu on his own (he could read!) he can’t write or speak but he can read. Day seven I saw a muscle twitch in his right leg.

Day eight we moved to a normal floor, big progress. Day nine dad said his first word “oh no” he said is while watching a gazelle be eaten by a lion. By day ten I had a list of words that had slipped out of his mouth and he had no idea: oh no, wow, woe, nice, ok, and oh my god (that one directed at me when I couldn’t get an Italian ice open fast enough).

Day ten was a big day. Day ten we were discharged from the hospital. That was the day we were granted admittance to the rehab hospital. The very one mom and I wanted dad to go to. The one we had been fighting for him to go to. The one we had spent countless hours on the phone moving heaven and earth to get him to. Dad cheered when he found out and hugged me. He’s not a hugger. That was a big day.

[i-will-keep-fighting]

Day One of our Journey

It all started a month ago, my father was away on vacation and experienced some double vision for two days. After some convincing he went to the urgent care they checked him out and he had some moderately high blood pressure (162/84) he’s had high blood pressure for years he’s on medication. They suggested a CT. His CT was clear, the double vision cleared up and he flew home. When he got home he had his retinas checked out. They also came out normal. And life went back to normal. My father very active. He’s 56 years old, runs his own business, plays golf regularly (always walks the course never takes a cart) and plays in a softball league (he’s their third baseman) so he’s an active man. He also runs our house (ie mows the lawn, fixes any busted pipes, does all the cooking etc).

On April 25th my father is alone most of the day (my mother an I work from 8am-7pm) he experiences extreme dizziness, weakness and when he tried to call and text us is was just gibberish he couldn’t. My mother got home first he was standing but hunched and shuffling and slurring his words. When I got him I assessed him and found he was weak in his right side. So off to the ER we went. As he’s sitting in the ER he’s getting better and more normal. Another CT and it’s again normal. Doctor thought he may have had a TIA (a mini stroke that repairs itself) they wanted to keep him over night but dad wanted to go home. They said he likely was fine and dad went home ama.

This brings us to April 26th mom had a big concert and I had work. I left last at 8:30 I checked on him he was awake and normal. Normal neurological exam. My mother called his doctor as work mad because the MRI had not yet been ordered. She was told the insurance kept denying it and to take him to the ER that way it would have to be done. Her boss cancelled her concert and home she went. At 10:30am she found him on the ground babbling incoherent unable to move. At some point between 8:30 and 10:30 he had suffered a massive left sided ischemic stroke. The time lines important. Knowing a timeline gives you options. He was rushed to ER. That hospital was not equipped to treat him fully but they could stabilize him. He could not speak. He could not move his arm and leg on his right side. And he was screaming. A CT was performed and showed massive damage on the left side of his brain. We made the choice to give him the clot busting medication and he was shipped to a university hospital where he could be fully treated. At the university hospital we were given an option there was a research trial an experimental drug he could be given that may help control swelling of the brain. Swelling can kill and can cause more trauma to the brain. Mom and I both wanted it. But dad started making a lot of noise. He looked aware for the first time and he lifted his left hand (the only hand that could move) and I asked him “dad I want you to have this drug it can help you with less swelling but you have to tell me if you want it squeeze my hand if you want it” and he squeezed my hand. But I wanted to be sure. So I asked again “dad I really need to be sure please one more time if you want this drug it’s your choice” and he lifted his head looked me dead in the eye and squeezed the hell out of my hand. And like that we were enrolled in the trial and I knew even though he couldn’t talk to me my father was still in there somewhere. That would start our stroke recovery journey.