Catching Arm Movement

Today's update is coming to you from the east coast... It's been a week since I left Tulsa for home in northern Virginia and it's been a little tough knowing I'm back to a normal routine while the rest of my family continues down a road with radically different day to days. Knowing I have the full understanding and support of dad, mom and sisters to contribute what I can from halfway across the country, I'll continue to take my turn posting updates, which should be fairly easy since I get a steady stream of text messages, pictures and videos throughout the day.

The biggest recent success from my point of view is the mobility my dad is getting in that right arm. Yesterday I got a glimpse of some movement for the very first time since the stroke (he kind of flung it from the armrest of his seat in the direction of the therapist using his shoulder) and today I get this video where I see him ACTUALLY BENDING HIS ELBOW.

Perhaps it's easier to see improvement when I'm not there every minute of the day, but I'm just elated by the progress he's made in the last few days. Since my dad arrived at rehab he's had an arm rest installed on the right side of his wheel chair to support his floppy arm; on Monday the therapists will reevaluate whether he still needs it.

Early next week therapists will also evaluate his swallowing to see if he can step up to "normal" food (since he started eating he's been on the mushy food diet). Perhaps the next step will be graduation from the kiddie table where nurses yell at you for taking big bites and eating too fast! I'm sure he's looking forward to that day...

Daddy has also convinced the occupational therapist that he doesn't need her to help him get ready in the morning. Apparently he completed the morning routine on his own with minimal verbal instructions (mostly for maintenance of his right side), so he's been downgraded from OT to nurse aid assistance in the morning.

Finally, the top doc complimented Daddy on all the progress he's made and said that all the therapists bragged about him in their Friday staff meeting. I'm sure it's true and she's not just saying that...

Though we're certainly not surprised by his work ethic, Daddy continues to impress us all.

#1

Outsmarted

Today we watched daddy’s occupational therapist work with his right shoulder, arm and wrist. We were able to see some movement in his shoulder as she had him work on putting his wheelchair break in the off and on position. We’ve been told that the large muscles (shoulder, bicep) will typically come back first followed by the small muscles (wrist, fingers). Daddy takes a head on approach in his occupational and physical therapy sessions, he’s a hard worker and the therapist typically have to make him slow down and take a break. I love his go-getter spirit!

Daddy worked with a new speech therapist today since his normal therapist is off for a few days. She worked with him on saying some familiar phrases. She would write each phrase on a white board and have daddy repeat after her. They worked on “I’m hungry,” “I want to lay down,” “I’m thirsty,” and “I have to go to the bathroom.” He would be able to get each phrase out with some difficulty, tried until he got it right. She even got him to introduce me, “My daughter, Jessica." I would like to highlight that he said my name first, sorry #1 and #3.

After each meal daddy is supposed to stay sitting up for 30 minutes in order to let his food digest. The nurses let us know that daddy still does not like this plan and continues to show off his independence by trying to get himself into his bed from his wheelchair. Today, in order to keep him safe, the nurses went ahead and put him in bed after his meal (to his grinning delight). The nurses then outsmarted him and promptly moved his bed into a sitting position! To top it all off daddy cannot reach the remote to lay his bed back down. He thought he one that battle… 

Nurses: 1 Daddy: 0

#2

Puppy Love

Things are really going great for Daddy lately. He has been improving in all 3 areas of his therapy. In physical therapy he was pushing around a shopping cart with more ease than he was a few days ago and with less help from the therapist. In speech his therapist is noticing much improvement from when he first arrived a week ago. He is able to complete common phrases fairly easily (ie. up and ______, east and _______, left and ______), count to ten, and has gotten more clear on his "yes" and "no". Dr A (Doc over rehab facility) also took Daddy off of his peg tube feedings as long as he continues to eat well. We could not be more proud of all the work that Daddy has been doing and cannot wait to see all of the improvements in the weeks to come.

Aside from therapy, Daddy had a pretty exciting day. He got a visit from his dog, Lexi. This also meant that he got to get out in the sunshine for a little while. Lexi was definitely happy to see him. She sat in his lap and gave him kisses while he got to pet on her. Daddy seemed content to spend about 15 minutes with her and then was ready to go back inside. Lexi on the other hand was devastated to see him go and I had to drag her back to the car. We will arrange another visit between the two of them again soon!

 

Daddy also wet shaved for the first time since the stroke! I took that as a sign that he was also ready for a (much needed) haircut! #2 had a friend come up and give him one and he definitely looks more like himself again. His girls sure think he's handsome!

 

Today was a big day for both of my parents. Today they celebrated their 37th wedding anniversary. I'm sure it wasn't the ideal situation, but I think they both had a pretty good day. We were able to arrange for them to have a private dinner (aside from the nurse sitting in the corner to make sure Daddy didn't choke) and brought in Daddy's first non-hospital food. Mom said he really enjoyed it!

 

Happy Anniversary to my parents, and to many more happy years together. Love you!

 

 

 

 

#3

 

Playing Games and Walking Laps

Today was Daddy's busiest day since the stroke; he had two occupational therapy sessions, two physical therapy sessions and four speech therapy sessions. He's getting lots of extra attention from his speech therapist since verbal communication is currently his biggest obstacle. She took a picture of him smiling yesterday to document any improvement in his “face droop”  (which is really only noticeable when he smiles). I’ve become very attached to daddy’s half smirk - it’s very endearing!

Daddy spent one of his ST sessions playing UNO. He got confused with some of the cards (i.e., skips and wilds), but I was able to see his hand and he played the right card about 80% of the time. The therapist asked him to say the word “pass” when he didn't have a play; he often struggled but got the word out each time. At the end of their session daddy had four cards left and his therapist had two. She asked him how many cards he had and he counted to four. (We’re learning that it’s a lot easier for someone with aphasia to go through a sequence (i.e. counting up to 4) than just saying the number by itself). She then asked him who won the game and he gave her a laugh and a half smile, replying, “you won.” We know that had to drive his competitive spirit nuts!

The PT had daddy walk around the gym using a chair as support while she stabilized the right leg as he went. He made about ¾ of a lap around the gym.  It was a lengthy distance and I was quite impressed! You can tell that the PT wears daddy out, but it’s the highlight of the day. He’s such a natural athlete!

In unrelated news, daddy’s hair is getting pretty long (we figured he was due for a haircut about the time he had his stroke) and he messes with it a lot. We’ve asked him multiple times if he would like a hair cut and he answer with an convincing “no”.  He obviously thinks his shaggy style looks good, and this is the only time us girls will let him get away with it.

We've had requests for an encore presentation of the aphasia video (referenced in a previous post) tomorrow at 10:00 am. Anyone is welcomed to come watch it if you like!

Thank you for continued prayers. Right now we are asking for focused prayer for daddy’s spirits and that he will stay uplifted and determined. Also, that he makes and recognizes continued improvements in his speech.

#2

It's Still Me

On Friday the therapists invited the family to watch a video on aphasia, the condition my dad has that affects his ability to speak (a portion of the 17-minute film is available at https://www.youtube.com/watch?v=e9_dpe9Rbvw; I'm not sure my dad would agree with the "victimization" it portrays but it does have some good information about what aphasia is, and what it is not).

One of the things the video pointed out, that has been reiterated many times by the therapist, is that my dad is still the same person. He has the same personality, intellect and sense of humor, he just can't communicate it the same way.

Daddy has really driven that point home over the course of the last few days. His propensity to question authority and do what he feels like when he feels like is still very apparent. He's been dubbed "90 to nothing" by the physical therapists, which is a true reflection of how he has approached fitness and physical challenges all his life. He continues to inhale food after being told again and again to take it slow (the look he gives his family and nursing staff when we put our hand on his fork is very familiar). While the rehab staff have asked daddy to stay up in between therapy sessions and at least 30 minutes after a meal to ensure everything is getting down properly, he continually attempts to move from chair to bed unassisted. His wheelchair and bed have been "alarmed" to ensure he doesn't try to exit the wheelchair or bed unassisted, but it hasn't stopped him. After a particularly dangerous attempt this morning (he apparently ended up on the floor but managed to stay in one piece), he has earned himself a set of restraints when friends, family and hospital staff aren't around. His immediate family finds this all very consistent with his personality and while unhappy that he continues to buck instructions, happy to see that he's certainly still there.

#1

Open the Door

If Daddy thought he was getting an easy Saturday, he was sorely mistaken! He had 2 physical therapy sessions, 2 speech therapy sessions, and 1 occupational therapy session this morning.

In his physical therapy sessions he worked on sitting and standing, walking while pushing a chair in front of him and standing behind a chair while raising his left arm in the air and leg to a stool (meaning all of his weight was on his right, non-working side). All of this was done with plenty of assistance from his therapist, however she said what he was doing was "death defying" and very scary to be putting all of his weight on limbs that may not have much feeling in them. She was proud that he had even made the attempt and done it successfully at that! She learned a little about how brave my Daddy is today.

In speech therapy they worked on "yes" and "no" and shaking or nodding his head. If you've been to visit him, you know that most of the answers to questions are "yep" or "yeah" even when he means no. This is common with aphasia, but I noticed this afternoon I was getting some definite no's and head shakes from him. They also worked on the iPad and had him spelling words from a picture. He would get some letters mixed up, but once he looked at the word he would know there was something wrong about it and fix it. Another thing his speech therapist has started doing, is making him say "open the door" before he's allowed to leave the session. It has taken him several attempts, but he has always gotten it out eventually. I can only imagine what Daddy thinks of this game... But I think it's pretty genius. I am hoping to get to use that some once he's at home! (Ha.)

In occupational therapy they worked with Daddy's right arm. This is the least functioning part of his body. The therapist said she definitely felt more movement in his muscles than she did yesterday. She had him sliding his arm to different objects on a table, picking up a cup and dropping it and using his right arm to put on his wheelchair brake. All of this was done with much assistance from the therapist, but she said she was seeing a lot of improvement.

We got some good news last night about the duration of Daddy's stay at the Rehab Center. They have given us a tentative discharge date of June 16th. That's a month from the day he was transferred. We were told that it is very rare for anyone to stay longer than 2 weeks. We are overjoyed that they see enough fight in him to want to keep him the extra time and that he will be in twice as good of shape when he finally gets sent home! Prayers were definitely answered!

We had to say goodbye to #1 today as she went back to Virgina to her husband, son, and job. We hated to see our assertive attorney leave, but we know that she will still be much help even from a distance! She is planning another trip back towards the end of June and she's expecting to see lots and lots of improvement when she gets back!

Tomorrow is a day off for Daddy, so feel free to stop by to say hello!

#3

Thoughts from Mom

This verse of the day seemed very appropriate after my first night of 8 hours of sleep.  I do feel some what restored.  Thank you Lord.  Each day has brought so many new challenges for me and Rick.  Our challenges are taking us in different directions right now and I miss his support.  For Rick the challenges of rehab and for me the day-to-day decisions that we used to make together.

Rick is locked in a world without language for now.  I am praying that God would restore it and that Rick would use it to glorify His kingdom.  And maybe to talk to the rest of us too.  He faces many other challenges but Rick is a fighter.  Anyone who has run marathons knows how to gut it out.

We  are both very independent people but I miss his wisdom, guidance, and leadership.  I miss his use of language and the unique and powerful way he spoke.  I miss our coffee in the morning and quiet conversations.  I miss the many little things he did routinely to make our lives flow together.

On May 27th we celebrate our 37th wedding anniversary and there has never been an anniversary that I have appreciated him more.  I am so grateful that God put us together.  That he gave us our three beautiful, courageous and resourceful daughters, our two grandsons and our new little granddaughter who will be arriving this summer.  What a legacy we have.

Thank you so much for all your prayers.  They have sustained Rick, me, the girls and our son-in-laws.  And a potential son-in law, Zac, who we have come to love dearly.  Please don't stop, it helps us get up in the morning and get through our day.

Our God is faithful!

Kathy

Let's Break Bread

Daddy passed his swallow test this morning and had his first meal in two weeks this afternoon! He's getting "transition" food, but it looked pretty normal to me: a shredded beef casserole, sliced carrots, mashed potatoes and gravy, apple sauce, chicken soup and tea. The speech therapist sat with him for lunch, telling him numerous times to slow it down and not to take such big bites. Given his voraciousness she wants a family member around during meals times to ensure he takes it slow... right....

So long as he's consuming enough calories through "real" food he won't have to get PEG tube feedings anymore. He'll still have to deal with the tube for another five weeks before it can be removed, so staff will continue to utilize it for medications until they're confident he's getting everything down correctly. We are so happy to be (mostly) over that hurdle.

The swallow test messed up some of the morning scheduling so Daddy and I did a fair amount of waiting around this AM. We spent the time playing catch (everyone will be happy to know his football spiral has not been affected) and reading the paper (daddy looked like he was reading but didn't have on his glasses so not sure if he was really reading or just pretending). I made the mistake of parking his chair next to his bed during an hour break (he was told to stay in the chair) and he managed to get himself from the chair to a laying position in the bed. His chair and bed had been "alarmed" so that nurses come running whenever he pulls this sort of stunt (someone must have told the nursing staff he's a run risk). I turned off the alarm, narrowly saving him from strong reprimands, so I guess I'm an accomplice. At least I now know better than to park the chair next to the bed...

PT (Ms. T) worked on his ability to use his trunk and legs without over relying on his good left hand; for example, they had him hold onto a ladder standing up and move bean bags from a lower step to the top step (he couldn't lean on that left hand since he was using it to pick up the bean bag). Ms. T also had daddy holding onto the ladder and doing shallow squats to work on his balance.

OT (Ms. S) bragged on Daddy and his ability to get through the morning routine. She's helping him to get dressed, teeth brushed, showered, etc. and said she saw notable improvement in his abilities since yesterday. Later in the day Ms. S worked on that right hand which is still looking pretty flimsy. She also practiced getting him in and out of the chair, which will only further encourage him to break the don't-get-up-by-yourself rules.

He's impossible, just like he always was.

#1

Feel the Burn

Big first day at Bernsen rehab! Here was the aggressive schedule of events:

7:00 Occupational Therapy (get dressed!)
8:30 Speech Therapy
9:00 Physical Therapy
9:30 Occupational Therapy
10:00 Physical Therapy
10:30 Speech Therapy
11:00 Social Services (meeting with case worker)
1:30 Physical Therapy
3:00 Speech Therapy

I came in for the 9 AM session and Daddy didn't kick me out so I stuck around through his 11:00 meeting. Given his communication challenges it was helpful to have a family member around so the therapists could get to know him a bit. I took the opportunity to brag on my dad's past accomplishments including three marathons and insurmountable collegiate baseball career...

A few small successes I witnessed this morning--

• Scooting from side to side relatively unassisted
• Moving from the wheel chair to a seat and back with assistance
• "Firing" of the right hand shoulder muscle (I didn't actually see this but the therapist said it was there and that it was very exciting)
• Sitting tall and strong while being pushed around from all sides
• Identifying written numbers (there was some prompting and he got stumped by the dreaded number 7)

We continue to face challenges with the aphasia. Daddy can't get many words out or respond with hand gestures or through writing. For example, when asking for a thumbs up we'll often get an index finger or pinkie. Yes and no responses, either through words or hand gestures, often get mixed up (though we can usually figure out if he means yes or no by the facial expression or insistence in his tone). This is probably the most frustrating challenge for all of us; it's hard not to be able to communicate what you want or understand the need.

My favorite part of our morning was witnessing some independence! Daddy got a wheel chair today, as soon as he was left to his own devises (a five minute break in between sessions) he shot out of the room using his good leg to pull him along. He rolled directly to the bathroom, nature was calling. He also rolled himself promptly to bed as soon as his last morning session was over.

There was no lack of trying on Daddy's part today. I saw lots of grimacing and sweating as he tried to get his body to do what he was telling it to do. He was snoring before his head hit the pillow for an afternoon nap, but he never let the fatigue show. When the therapist asked if he needed a break the answer was always a resounding "no" (or "yep" with a brow frown which means no!). I of course expected nothing less.

#1

Jail Break

Daddy was discharged to the rehabilitation center around 2:00 today. He was FINALLY disconnected from all the IVs and heart monitors that tied him down the past two weeks. He still has the PEG tube hooked up for continuous feedings but starting tomorrow he’ll get bolus feedings which means he’ll plug in for about 30 minutes four times a day, and will otherwise be un-teathered.

Daddy will get to wear real clothes while at the facility, I’m sure he’s ready to hang up the open-back gown (as are we!). Everyone eats meals in the dining room and has the freedom to move about the center and go outside as able. We’re all looking forward to the more “homey” atmosphere.

Visiting hours are between 8:30 a.m. to 8:30 p.m.; visitors can check the daily rehab schedule (posted in the main eating area). He’ll have various therapies scheduled in 30 minute increments so if you come during the weekday you may have to wait until a session is over to say hi. That said, he’ll generally be done by 3:00 so the late afternoon/early evening is probably the best time to visit.

On weekends, there is a “therapeutic session” on Saturday morning but he’ll have the remainder of the weekend to catch up on rest and visit with family and friends.

The rehab facility is located on the fifth floor of the Mary K. Chapman Health Plaza, 1819 E. 19th Street. Parking is available to the east of the building, accessible from Wheeling Avenue.

Daddy rested a lot today which is probably a good thing given the amount of work awaiting him tomorrow. Here’s to one last day in bed before the work begins!

#1

We're on the Move!

If you were on the 9^th floor at St. John today you heard spontaneous cheering from the Thayer room. Lots of big things happening!

First, daddy’s blood pressure stabilized over the past couple of days. We’ve seen anywhere from 111–134 on a regular basis. His doctors are continuing to monitor and find the right “cocktail”. We are sure glad to see it down to a manageable level!

Second, the occupational therapists were pleased with daddy’s progress again today. They worked with him on shrugging his shoulders, sitting up and down (and up and down) and then as the grand finale, walking (with assistance) from the bed to the door! As always, he is an over achiever and went two laps! We were all really excited to see this new trick (#1 was getting tired of the old ones). After the therapist left, daddy gave us this look and pointed towards the door, which we interpreted as, “I can walk, let’s go.” We teased him about being cocky and told him to rest up; he’ll need all his strength for rehab!

Last, but certainly not least, daddy was ACCEPTED into the Bernsen Rehab Facility! This is a huge answer to prayers! He'll be transferred morning and then the fun will begin. After a three-day evaluation period he'll get a plan of action for the duration of his stay but we expect he’ll be there 10-14 days and have at least three hours of physical, speech and occupational therapy daily. Visitors are always welcome (and encouraged!), he’ll likely have “programming” every weekday until around 3:00. We’ll let everyone know when we’ve figured out the optimal visiting time and where to go.

Thank you again for all the prayers. We see God continuing to move and are so thankful for all the support!

God is so good!

#2

Who's the Boss

We heard more positive news from the OT today, she suggested working on stamina and ensuring that Daddy sat up in the chair for at least half the day. So, there will be a lot more upright positioning in his future. She also agreed with previous assessors that he is a good candidate for an aggressive rehabilitation program and put as much in his case file which will be reviewed in conjunction with a formal evaluation scheduled for tomorrow.

We got a few additional phrases today, "how are you" and "you betcha". His nonchalant reactions to our shouts of glee in response to hearing these new words makes me think he's playing some sort of joke on us.

The Thayer girls made good use of our time today and visited two possible rehabilitation centers including Bernsen located at the St. John's facility and the Muscogee Creek Nation Rehabilitation Center in Okmulgee. We got a lot of good information about what the day to day would look like in the coming weeks and what to expect as far as his recovery. We came away feeling very positive about the care available and are now focusing on ensuring we can get him "processed" in a timely manner so that he can get started as soon as possible. While Daddy seemed very eager to ask questions and provide his opinion on the potential facilities, he's still not able to get his point across so will have to trust the girls to make these decisions on his behalf (I told him as much and will take the shrug I got in response as acquiescence).

Bernsen's evaluation will take place in the morning and if all goes well he could be transferred as early as tomorrow afternoon. He's officially off all medications except what he takes to control the blood pressure (which was very good today, average reading was around 118/76). He'll continue to receive nutrition through the PEG tube until he's deemed a "safe swallower", but both facility reps we spoke with today said they're used to working around and with the PEG during rehab. He's been doing really well with the ice chips (he got to have ten of them today!) so we'll continue to build from there.

Thanks again to the many, many visitors we had today. Daddy was a very sleepy but seemingly content when we finally departed this evening. We got that stern but familiar "get out of here" finger motion around 8 PM and were happy to oblige. We'll let him be in charge of something, even if it's just his bed time for now...

#1

Continued Stabalization

Dr. U said daddy’s feeding tube is looking great and he is tolerating the nutrition well. He’s getting 65 ml (2 ounces+) every hour for 24 hours (take that newborns). It doesn't seem like a lot, but at least it’s something! They will do a bedside evaluation early next week before trying a swallow test again. 

Daddy’s blood pressure was pretty stable throughout the day. The doctor continues to tweak his blood pressure meds, but his numbers were around 140-150 which is a vast improvement!  

Daddy had his final dose of mannitol today, in fact, the doctor decided to cancel the last scheduled dose. Yes! After reviewing daddy’s blood work the doctor said his kidneys and blood counts all look good (which could have been affected by the mannitol) and there is no sign of infection resulting from aspiration and his inability to swallow.

Dr. U processed his inpatient rehab referral on Friday and we're hopeful for a Monday discharge. We're still not sure what facility he'll be at; please join us in praying that God will open the right doors, at the right facility, for the daddy to get the absolute best care possible.

A big thank you to everyone who came to visit today. We saw lots of laughs from daddy as friends reminisced and told old stories. We are learning there are some benefits to daddy not talking – we get to learn a lot more about his shenanigans growing up. Keep the stories coming!

Continued prayers for swallowing, speech and movement are appreciated!

"Always be joyful. Never stop praying. Give thanks no matter what happens. God wants you to thank him because you believe in Christ Jesus." 1 Thessalonians 5: 16-18

#2

Refueling

Daddy FINALLY got to "eat" today! (Though he would probably take issue with the term.) Dr. P (GI doc) gave the thumbs up at around 7:15 a.m. and a long five hours later, his first meal arrived. He started off at 20 ml of "smoothie" per hour, at 4:00 his dose was doubled and by 8:30 he was at his “goal dose” of 65 ml per hour.  His family and physical therapists are very excited to get some nutrients in him so that he can build is strength and get to work!

This morning OT had Daddy sitting up unassisted, standing for about 5 minutes (assisted), and moved him into a chair where he remained for the next 3 hours. He also got some homework exercises (though my attempted personal training session was unsuccessful because my dad is stubborn). Daddy is on the weekend therapy list so will hopefully not get any days off over the weekend. 

We saw improvement in his BP today as well. The 7am reading was 212/103 but after the nurses were finally able to administer a pill through his tube it was down to 143/89. It climbed into the 160s in the afternoon but the nurses seemed satisfied so long as it was near the 160 goal. We are optimistic that the BP will continue to stabilize now that meds can be administered through the PEG.

Dr. U (neurologist) told us the progress is good and he is referring him to an inpatient rehabilitation center, we're shooting for an early week discharge.

A few more bits of good news: Daddy should finish his last dose of mannitol  (brain swelling regulator) tonight which means he'll soon be rid of his IV, he got to chew on four tiny bits of ice, brushed his teeth unassisted and when we asked if we could borrow his car, in lieu of the typical "yeah" we got a very clear "I don't care"!! Best stated indifference ever!

Lastly, it is clear that daddy's girls are driving him nuts (truth be told he's driving us a little nuts too) so we welcome all weekend visitors (or drop him a line in the guest book so we have something to talk about!). 

#3

Prime the Peg

Daddy was more talkative with the speech pathologist today. He counted to ten without prompting and recited all the days of the week. His girls had seen these parlor tricks before so weren't overly impressed, but Dr. Tom (head neurologist) sat in on the session and was much more impressed reiterating that many times stroke survivors with resulting apashia don’t recover any speech so the fact that he’s already got words coming is great. He also assured us the swallowing would eventually come back with time as the brain continues to reconnect. The right hand would probably be last and the toughest to get back since there is so much more communication that needs to go on between the brain and the hands.

And we FINALLY had a feeding tube inserted today! After Tuesday’s failed swallow test he was scheduled for a gastronomy tub (or “PEG” tube), allowing him to receive food and medicine without having to swallow. Nursing staff think having the ability to administer blood pressure medicine through the tube as opposed to an IV may make it easier to control so we’re optimistic about that too since the BP is still too high.

The tube will be in for a minimum of six weeks, but as soon as Daddy is able to swallow food and drink safely he won’t have to use it anymore. While I’m sure he’d prefer a nice rib eye the old fashioned way, this will take the pressure off relearning the swallowing reflex for now.

Along with the tube comes a registered dietitian, his meal plan will consist of “commercial feeding formulas” that are designed to provide all the protein, carbohydrates, vitamins and minerals needed (luckily he won’t taste it).

We have to wait 24 hours before using the tube; so we’ll have one more afternoon of a hangry papa before he finally gets a full belly.

Daddy was given orders for bed rest the remainder of the day so that the tube insertion point could heal. While he couldn't talk (ha) the hospital staff into bending the rules and putting him in a chair, he insisted on at least sitting up with his legs dangling over the bed for a while (the nurse did conveniently ignore the bed alarm that went off). He, Jessica and I had a good chuckle while trying to lay him back down; it was obvious none of us knew what the hell we were doing but he managed to get back in a horizontal position with all limbs intact.

Here’s to the last bedtime with an empty belly… cheers!

#1

Turning Corners

Daddy and mom had a long night last night, the nurses were continually monitoring his blood pressure and trying to get it down (it was 200+ over several readings). Typically it's checked every four hours but the nursing staff monitored it every 30 minutes throughout the night and administered several doses of different medicines.  While it came down a few times throughout the day it stayed consistently high and staff is still figuring out the right “cocktail” of meds. We are praying for some good rest for mom and daddy today and that we quickly find a way to control his blood pressure!

Highlight of the morning: I brought up my husband Brad’s electric razor and daddy gave himself a good shave! He even used a mirror to check the spots he missed. He’s still one handsome guy. Thankfully his indian genetics are working in his favor and his facial hair grows slowly!

The Occupational Therapists visited this morning and worked on bearing weight in the right hand and leg, sitting and standing. He has a trace of movement in his right arm and some slight movement in his right leg. Daddy sat up on his bed with no type of back support for about 15 minutes and was sitting in a chair for a good portion of the morning – that was great to see. The therapists keeps reiterating the importance of center of gravity and how good his is considering the injury, i.e., he sits up straight and tall, moves both his eyes together at the same time and reaches across his body to his “non-functional” side. We keep hearing “it’s not a muscle issue, it’s a brain connecting issue.” So the prayer focus here would be that daddy continues to work hard and that his brain reroutes and reacts. We know all things are possible through Christ!

The speech therapist worked on some hand signals including the “okay” sign and thumbs up and thumbs down to help him communicate. She also got the white board out (thank you to whoever brought that!) and wrote down multiple choice answers for several questions. For example, she asked him what he would like to drink and wrote down the options coffee, gin, paint and coke. He quickly pointed to coffee. She then asked him how he likes to take his coffee and she wrote down black, with cream or with cream/sugar. He pointed to black – which we ALL know is how he drinks his coffee! He was also able to point out the month he was born, what hospital he was at and the current day of the week. I don’t know that any of us would have gotten that one correct! He answered every question "correctly" which further evidences that his thoughts and understanding is in tact.

You can see daddy working really hard with his therapists, he is ready to have everything working again! We are praying that he can be checked into the Bernsen Rehab Center located at the hospital by Monday. One of the therapists gave us some information about a typical rehab day, which would consist of three hours of intense speech and physical therapy. We think daddy will react very well to the intensity of the program. You can tell that he is ready to get to work, even though he is hungry!

We got a visit from Dr. P., the gastroenterologist, and got a game plan for daddy’s nutrition. Since he's been unable to pass a swallow test they are going to put a feeding tube in his stomach tomorrow morning. We have to wait 24 hours after the procedure before we can use it so daddy will have his first “meal” Friday morning through his new shiny tube. It will have been eight days without food, we'll just say he’s been fasting for his own recovery J.

The doctor let us know that once we get a plan for nutrition (the feeding tube), wean him off the mannitol, and get his blood pressure under control then we could start working on discharge papers for the inpatient rehab facility. Best case scenario we'll be in rehab by Monday!

We thank you again for your continued prayers and support! Please feel free to share this blog with anyone you know – the more prayers the better!

God is good!

#2

Jumping Hurdles

Daddy had another busy day. His morning started off with a visit from Dr. T (neurologist) who is still happy with the progress. After his visit, Daddy was carted off to his esophagus procedure. Doctors said that the esophagus wasn't as bad as they had originally suspected, but they did stretch it out some, in hopes that it will improve his swallowing ability. Crystal likes to say that Daddy is going to leave the hospital "improved" and was trying to think of any other pre-existing issues that he should get taken care of while he's there, which I'm sure he appreciates (ha).

Daddy had another swallow test this afternoon. Unfortunately, even after the "esophagus stretching" he was unable to get all of the foods and liquids down. We still aren't sure what the next step will be in terms of nutrition (he hasn't had anything to eat since breakfast Thursday) but we're expecting a feeding tube soon.

Daddy also got a visit from some physical therapists who had him sitting up, moving his left and right leg, standing, and swaying (we like to say he was dancing). They still aren't getting any action out of his right arm, but we got some tips on how to move it around to help his brain recognize it again.

The therapist also gave us some information on possible post-hospital rehabilitation; there are generally two options: 1) in-patient rehab where he would have 3 hours of therapy a day lasting 10-14 days or 2) a "skilled nursing" program which takes place in a nursing home with 1.5 hours therapy each day lasting closer to 30 days. Obviously, we are hoping for the more aggressive route, he has the motivation and we think he's ready!

Another issue we faced today was high blood pressure. Doctors targeted an upper limit of 160, he averaged about 190. Staff administered 3-4 different blood pressure medications to try to bring it down, but as of when I left it was still a little elevated.

The mannitol dose for swelling was reduced by half this evening, great news! He will be weaned off over the next couple of days.

Daddy brushed his hair again today and got a good teeth cleaning. Next up is a haircut and shave, we're taking volunteers for that job. :)

Thanks so much for all of the prayers, visits, and phone calls. My Daddy and family appreciate it! Keep it coming!

-Tarra (aka #3)

He Sings!

Daddy had a busy day today! We started off this morning with another CT scan to see if the mannitol was able to stop the swelling from getting worse. The doctor was pleased to say that the swelling had not gotten worse and even improved a little in certain areas. While that was incredibly encouraging news we are still “deep in the woods” until tomorrow night. Our big prayer focus is that the swelling does not pick up again and will continue to decrease.

We’ve learned that stroke victims can lose their ability to swallow. This is dangerous, because if food/water goes down the wrong tube and into the lungs pneumonia can occur. So far daddy has failed two swallow tests. After talking with the doctor, he believes daddy might have an esophageal stricture, which means that his esophagus is narrow and restricted, making it hard to swallow. This would be a condition that daddy had prior to the stroke. We met with a gastroenterologist and tomorrow morning they are going to put a neonatal endoscope down his throat to see what’s going on. If it is a esophageal stricture they will dilate his esophagus using dilators of various sizes. If all goes well we'll have another swallow test in the next 24-48 hours. He hasn’t had anything to eat or drink since Thursday morning, only an IV. The prayer focus in this area is that this procedure will be successful and allow will allow daddy eat!

The highlight of the day was when the speech therapist came in. Daddy’s vocabulary mainly consists of “yeah” (which could mean “Yes” or “No”) and “well”. During the ten minutes the speech therapist was with him we heard daddy count to 10, recite the days of the week and even sing a verse of “Jesus Loves Me”. It was amazing and brought tears to our eyes! We’re looking forward to getting him through this critical time and into rehab where he can focus on getting his speech and movement back! The prayer focus in this area would be for daddy to not become discouraged and that he would have a strong determination to fight during rehab.

Daddy is a very determined man and is working hard. Thanks so much for all your continued prayers!

Jessica (aka #2)

The Great Swell Watch

Yesterday's cat scan showed that the swelling had started as expected. The medical staff decided to start mannitol at 50 grams every 8 hours. The hope is that the medication will stabilize the swelling; there is a little room left but Daddy's brain can't swell much more without needing surgery to ensure the good brain isn't squashed (that's a medical term).

Nurses are conducting clinical exams every four hours to monitor the swelling, this consists of checking his eyes for dilation, looking for any markedly different movements in the hands and feet, alertness, vital checks, etc.

Today's cat scan showed no significant change in the swelling which was a very good thing. The doctor was very pleased and even surprised (we were not as surprised). Given the amount of radiation associated with cat scans we don't anticipate another unless the clinical exams show evidence that the swelling has increased.

The occupational therapist has some very positive things to say this morning. Apparently many stroke patients neglect the affected side of the body, but Daddy is very aware of his right side. He looks in that direction, reaches across his body and brushed his hair on both sides. He also has good balance and sat straight up in the bed unassisted. We still have no movement in the right hand (but there was some flinching later in the day when nurses stuck him with a needle in the lower arm). 

Daddy is receiving heprin to prevent blood clotting in the legs since he's not moving around much (he keeps taking off the intermitten pneumatic compression (IPC) sleeves, i.e., inflating compression socks so since he's not cooperating he gets to have a shot in the belly instead).

We also had a very positive visit from the speech therapist and a GI consult to look at some non-stroke related swallowing issues which Jessica covers in the subsequent post.

I am one proud daughter today,

#1

The Starting Line

On Thursday, May 7 Daddy (aka Papa and Rick) suffered a major ischemic stroke. At the time he was at the Claremore Indian Hospital for a "minor" stroke that had occurred on Tuesday. He was air lifted to St. John's in Tulsa around 11:00 AM.

The stroke claimed a significant portion of the left side of his brain along with the ability to communicate verbally and move the right side of his body. He's also having trouble swallowing and is therefore not able to eat or drink.

Given the extent of damage, doctors are closely monitoring the amount of post-trauma swelling and are administering mannitol to try to keep it under control. Staff is watching the swelling with CT scans and neurological exams over the next few days in hopes that more invasive surgery is not required.

Given all that, we've already seen vast improvements since he was admitted on Thursday. He's regained some movement in his right leg (he can lift the leg, bend the knee and wiggle his toes on command), mimics movements, and has on more than one occasion tried to climb out of bed when no one was watching (while he was thoroughly chastised by staff, I eagerly cheered him on). Yesterday he sat in a chair with the help of a lone 90 lb therapist, she looked at me and stated "we need to get this guy to rehab, he's ready for some therapy!"

Verbally he is able to (generally) answer questions with a "yeah", "yep" or head shake back and forth (no) and has retained many of his mannerisms and facial expressions (mostly expressing frustration or indifference... typical). Friends were able to cajole a few written comments from him, including his name, "make TV on" and "H20".

He recognizes friends and family and greets everyone with a hand shake or squeeze. While he can't verbally communicate it's apparent that he understands what's spoken to him; indeed, the women in his immediate family think the "selective response" is also consistent with his personality and not the result of brain damage...

Best case scenario the swelling is kept under control, surgery isn't required, and he is transferred to a rehabilitation facility in 5-7 days. Given his "aptitude" for all exercises thus far, staff is anxious to get him to rehab quickly. In the meantime, Daddy will get as much rest as possible while we get through the next few critical days.

We appreciate all the visits, phone calls, texts, thoughts and prayers thus far and those we will undoubtedly receive over the next few critical days and while on the long road of recovery ahead.

Our hope is that this blog will keep all our friends and family well informed on Daddy's progress. Indeed, this left-brained, analytical, to-the-point, non-emotional family member (wonder where I get that from...) welcomes contributing authors that have touchy-feely stuff to add! 

Please use the blog's guest book to send your love and well wishes, we'll pass on all the encouraging words!

Crystal (aka #1)