Diff'rent Strokes is your source for information about Todd Thelin and his stroke recovery. Please feel free to add comments about posts, add new information in the comments, e-mail new information for me to post, or ask questions that we can answer. Keep in mind that posts are moderated, so they will need to be approved before they show-up. This helps fight spam.

Sunday, August 31, 2008

Oops, it's been a while

Many people have started calling asking for an update on Todd's eye appointment, so I'm finally getting around to posting to let the Internet world at large know how it went.

It was great.

Ok, I'll give you a little more than that. It ended up being not nearly as long as we feared, nor as invasive. They did all kinds of eye tests (like for colorblindness, peripheral vision, etc) and no MRI's or CT scans or anything like that. And here's what they discovered. Todd can see just fine, it's the looking that's the problem. Yes, they are very different things, just like listening and hearing.

When tracking an object, he can follow it, even down, and when fixed on an object and moving his head he can stay focused on the object, even down. However when his brain tells his eyes to look down, they can comply, only painfully slowly, slower than I can move my eyes intentionally. So he needs practice to build up speed with which his eyes obey his brain.

We learned that he's actually very lucky to have suffered bilateral thelamic embolisms. The luck part is in the bilateral part. The areas of his thalmus that were affected by the stroke control specifically his ability to tell his eyes to point down, and also make it possible for him to focus on close range. So because the strokes were on either side, his defficit is equal. If he were to have had a stroke on only one side or the other, it would have caused worse problems in his vision, because one eye would be able to look down instantly, while the other dragged, and you can imagine that would make it hard to see.

We should be getting his contacts early next week, and we are hopeful that will help, and he'll be practicing looking down. Kind of key when you work on the computer.

We also saw Dr. Dodds, who oversaw his care while an inpatient. He eliminated Todd's Lyrica, in the hopes that he doesn't need it for the nerve pain anymore, and to help him not be quite so tired all the time.

Yesterday he went to Brett's to watch the U opening game, and we've been on a date, and took his mom to Millies. Todd's really doing great. Oh, and he will be able to do a driving test with his OT, who is also planning on seeing him at home instead of at LDS hospital so that she can help him get back to doing what he actually does at home and work.

Sue left yesterday, and while we all miss her like crazy, it is another good step in the right direction. She was such an amazing blessing and support to Todd, me and Oliver but we can now prove to ourselves that we're ready to get back to business.

Life is getting good.

Monday, August 25, 2008

Neuro update

This post won't be very entertaining, as I'm not feeling very good today, and I don't have the energy to be humerous. Hopefully it will at least be informative.

Today Todd saw the neurologist for a follow up to his hospitalization. He saw Dr. Choucair at IMC, who evaluated his vision, asked about his behavior, and made sure that Todd's care was being followed by all the right people. I'm glad we went, because he was able to straighten up some appointments that were redundant, and scheduled an appointment that we didn't even know that we were supposed to have.

He wants to see Todd in three months to do another MRA to look at the blood vesles in Todd's brain to see how the vertebral disection has healed. They expect that in a person of Todd's age that it will heal normally and not have any future issues.

He explained that the cerebelum controls the motor movement, and that damage there can make a person clumsy, overshoot the target, and lose balance. Damage to the thalmus can cause "phantom pain" where people can't really explain the pain. This is exactly what Todd is experiencing, however, he is vastly improved even from when he left the hospital. As the doctor checked his eyes there was almost no jerkiness in his eye movement, no nistagmus (jerking of the eye when held to the far right or left) and he managed to look down better than ever before, though in that he was more jerky, and said it hurt.

Tomorrow we go to the marathon appointment, with the neuro optical department. We've cancled the neurologist tomorrow after noon (one of those redundancies) so hopefully it won't be quite so horrible.

Tuesday, August 19, 2008

Today was a good day

After dragging Todd out of bed to go get his blood drawn (they have to do it every week to check his Coumadin levels) we returned to LDS hospital for more therapy. Today he met with Dr. Marc Steed, who is a Neuropsychologist. Essentially he is a psychologist who is more specialized and educated to help with the mental stuff that people who have gone through traumatic brain injury go through. His job, as he explained it, is to help Todd to improve his quality of life.

Marc is a wonderful person, and has been a great support to both Todd and I. After finding out that we were LDS, he has not refrained from calling on our shared religious background for examples, ideas, and strength, which has been very helpful.

We talked about Todd's excessive sleepiness, and Dr. Steed sent a note to Dr. Dodds (the Dr. at IMC (who is following Todd's care,) who called later, and asked us to go in tomorrow to do another blood draw to check his Depakote levels, and also had us reduce his Lyrica (for the nerve pain) to once a day. Hopefully that will help him so he's not sleeping 18 hours a day.

Dr. Steed gave Todd some homework for the week (actually it will be 2 weeks, we will miss next week due to that horrendous long eye appointment.) With regards to that missing filter, he is to try to catch himself when he's about to say something inappropriate, and tell me confidentially, and I'll try to help him say it in a more appropriate way.

Then he saw Michelle, the speech therapist, and finished up his baseline testing, which he did really well at. He did some reading comprehension, sequencing, and organization. He was given some story problems that even I had trouble with, but he did great. He had to write down meals for 2 days, and then compile a grocery shopping list, and did perfect.

Afterwards we decided to get some lunch, and went to our favorite Mexican restaurant, Su Casa. Those who saw Todd struggle with feeding himself at the hospital would be very impressed with how well he handled his smothered bean burrito and tostada. AND he ordered water, instead of Coke, which he wanted very much. He was talking about going to get one later somewhere cheaper, and was about to tell me where, when the waiter came over, and instead of saying the name of the place he sang quietly "you know, da da da da da, I'm lovin' it!" Ofcourse I knew he meant McDonaldas, but didn't know that Todd actually knew the name, it wasn't an episode of aphasia, he just didn't want the waiter to hear him say it and get mad! Cracked me right up!

At lunch he did some great problem solving, leaning back so he could see his plate better. He said that he hated having to do that, but the point is that he DID it, and it worked. It went right along with things the doctors have said, that he will be able to do all the same things he used to, but that he may have to make adjustments, and do them differently.

After we ate, he took the bill to the front and paid, including figuring the tip, adding it up, and signing the credit card slip. I was really proud of him.

Saturday, August 16, 2008

Eye spy

Todd finally got in to see the eye doctor yesterday. They sent him to Moran, because they are the end all, be all of eye doctors. He saw Dr. Wu and Dr. Tabin, who did a full work up. Their findings were that Todd's eye trouble is not caused by muscle weakness, but rather by a disconnect between his brain and his eyes. Apparently this is due to the location of his strokes.

They said that there may be anecdotal studies about some exercise helping, or "standing on your head with a sugar cube on your tongue" and Todd piped in with "shooting shark piss up your nose" (a line from the movie Cutting Edge.) They told us that there aren't really any proven exercises that he can do that are known to help (though if we want to try, it certainly won't hurt.)

They then referred him to the neruo opthical team for a full work up. They specialize in hot they eyes are connected to the brain. We went to the front desk to make the appointment, and found out that when they said full work up, they meant it. It is expected to take between 4-7 HOURS!! I can't even imagine what kinds of tests they could dream up that would take that long. I imagine that there will be more CT scans and MRI's involved, but I can't understand what else they could possibly do.

He will go in at 10:00 am, and at 4:30 he has a follow up with neurology, so it will be a marathon day for both of us. Fortunately this appointment isn't until the 26th, so we have a little while to help build up his stamina. I'm guessing that's going to be an Adavan day though.

And by the way, Sue and I continue to see daily incremental improvement. It's not always somethingyou can put your finger on exactly, but Todd is continuing to be more and more "there" and becomes clearer and clearer in his thoughts and communication.

Wednesday, August 13, 2008

First day of out patient therapy

Todd had a big day today. He had two doctor appointments in one day, which meant that he could not sleep all day as he has been doing.

First we saw Dr. Peterson, our family doctor. We have been seeing him for many years, like around 8, so he knows us pretty well. He walked in the room with Todd's chart in hand, a stunned look on his face, and said "So Todd, what the heck?!" We told him that's what we've been saying. We told him all about what happened, and he said that he's been going over Todd's history, trying to figure out if there was something that he should have seen, or any warning signs, but couldn't come up with anything, so it is truly as we thought, just a freak accident that you can't see coming.

Not having seen Todd after he first had the strokes, but knowing the history, and how far he's come, he said with chagrin, like he didn't want to get our hopes up too high, that it might still be another month before Todd is able to start back at work. Another month?? Yippee!! That's infinitely better than the 3-4 months that the last doctor told us! Now before we all start throwing parties, let's all remeber that these are just guesses. So much of it is up to Todd, and even more of it is not up to any of us. So keep the prayers coming, they are still very much needed, felt, and appreciated. And please pay attention in your own lives for the blessings that I'm calling down on each and every one of you every single day.

Dr. Peterson has referred us to the Moran Eye Center at the University of Utah to be seen by their specialists. His vision is not good, but we can't determine ourselves if it's more than his decreased ability to move his eyes intentionally. (He can look straight ahead, and track movement, but the tracking is very jerky, he has a hard time focusing initially, but can't look down.) We hope that the eye doctor will have some ideas on exercises that he can do to improve his vision, because that's a big part of his frustration now.

Next we went immediately to his first out patient Speech Therapy appointment. She began as they all do with doing baseline evaluations, and these were much improved since his baselines in rehab. He found none of the oral muscle weakness which was present earlier. His aphasia (not being able to find words he wants) is still there, but is improving, but where he needs the most work (says me) is in his attention span. Anyone surprised here? Todd? I know. So she (Michelle) is going to work with him on strategies for improving his attention span and memory. I think I'll pay attention too, maybe I'll be able to remember where I put my brain.

In Todd recovery news:

Many of you who have spoken to Todd on the phone recently may have noticed the same inprovement that I'm about to mention. Since Todd first got his speech back his voice has been very monitone. In the last day or so both his mom and I have noticed a significant increase in the inflection of his voice. It's certainly not something that is vital to communication, but it makes understanding him a little easier. I can tell better when he's joking, (though even before the strokes he had great fun teasing me because I could never be sure). And it's also proof that his improvement and recovery is continuing.

He also has much better control over his emotions. He still gets overstimulated very easily, but instead of blowing up he is able to acknowledge it, and make steps to correct it. He's only used his Adavan (anti-anxiety medication) once since he's been home. In rehab he was using it almost every day.

And to leave you with a funny anicdote, Todd crashed as soon as we got home this afternoon. I went and ran errands, and our friend Misty came over later, about 7:30. The sun was just getting ready to set, when Todd woke up, and when he came downstairs he had different clothes on. He hadn't realized that he'd only been asleep for a few hours, and thought that it was 7:30 in the morning. It took some convincing to get him to believe that it was still Wednesday.

Tuesday, August 12, 2008

Words of encouragement

This recover stuff is HARD. Todd and I talked about it last night, and were reminiscing about all the physical therapy he had to do when he had shoulder surgery several years ago, and we thought that was hard! So I thought it might be nice to have everyone (I mean everyone) who reads this blog post a comment to let him know just how many people care, and are rooting and praying for him.

So how about it? Who all is out there? Let's hear it!

Oxygenation

Hi everyone, a couple of people have been concerned about an earlier post where I mentioned that Todd was on oxygen. Don't worry, there is nothing to fear. They discovered while he was in the hospital that he has sleep apnea (they could have just asked me; having slept with the man for the past 10 years I knew a long time ago that he was apneic.) They haven't done an official sleep study, but they noticed from all the times bugging him in the middle of the night for his vitals, that his oxygen levels were dropping below 90% at night, so for now they have him using a machine that takes room air and filters it until it's nearly pure oxygen. He has to wear a nasal cannula any time he sleeps and have this machine going.

After he sees our family doctor (later on this week) we will hopefully schedule a sleep study, after which he will most likely be fitted with a cpap (Continuous Positive Airway Pressure) machine, which forces his airways to stay open, thus eliminating the breath-holding spells that are sleep apnea. The cpap looks like this:
Dead sexy, right? Hey, whatever helps him get a restful nights sleep (and the not snoring isn't a bad side effect either.)

Saturday, August 9, 2008

Non-update

People have been bugging me for an update, but I'm happy to report that in this case, no news is good news. Since Todd came home he's mostly been sleeping, waking on occasion to eat (he realized that he's been really hungry because he's only been eating about 2 meals a day on average.)

This morning I took him to get his blood drawn to check his Coumadin levels, and I was imensely proud of him being able to get himself up and moving and out the door in a relatively short amount of time, with very little "nudging" from me. The trip exhausted him, and he came home and slept. This evening we ordered Chinese take out and watched the Beijing Olympics opening ceremonies, with Todd's usual sarcastic comments in the background as he sat at the computer. He stayed up for a few hours then went to bed with Oliver in tow.

He starts therapy next week with Speech, but doesn't have OT until the end of the month, due to them being booked up and then having a week of training.

Other than that, there's really not much to report. He's doing well, and though I can tell that being home sometimes brings on sensory overload, he's been able to hold it together without the use of his anti-anxiety medication, which I'm very proud of him for. I'm glad that we have the medication just in case, and I know he has to work at it, but it is huge to be able to tell when he's heading down that path and be able to know when he's had too much, and excuse himself from the situation. Huge.

So that's really all there is to report. I know that he loves people to call him, but if he's sleeping he will not answer. His sleep now that he's on Oxygen is that of the dead. He's getting used to sleeping with the nasal cannula, and will have to readjust all over again when he gets the c-pap (it's not for sure, but I'm guessing that's what will happen.) He still snores like a banshee though! :)

Tuesday, August 5, 2008

Home SWEET home

Blogger was down earlier, so I wasn't able to post this sooner, but...

TODD IS HOME!!!!!


We were pretty surprised when they came in this morning telling us that Todd was being discharged today. We hardly dared believe it. He still had all his therapy sessions, and even went to Best Buy, and picked out a CD, which he surprised me with.

Here he is at Best Buy with his OT Celeste and the Recreational Therapist Dave:

Afterword we stopped at the cafeteria for ice cream, and Todd was able to realize that he was getting overwhelmed, so we went back to his room and he rested while we got all sorts of discharge orders, prescriptions, and instructions.

Here he is finally exiting the hospital, with all his paraphernalia, being helped by his Nurse, Susan:

And finally arriving home, to be greeted by Oli and the doggies: He missed all three of them so much:

And our family, together in one piece, in one place.


HOME

Monday, August 4, 2008

Sue's First Full Day with Todd, August 4th

I arrived in Salt Lake on Sunday late afternoon and went right to the hospital to visit Todd. Not really knowing how the strokes had affected Todd until I could see him with my own eyes, I had decided it would be better to prepare myself for the worst scenarios rather than thinking the opposite. After spending about an hour and a half there with Todd, Amelia, Oliver, Jenny, and Carl, I left the hospital knowing that Todd is on his way to recovery. We all hugged and talked and laughed. Todd struggled trying to find some words, and some of his sentences didn't end in the way that he started them, but we could understand all of his words, he was animated, and we saw that he still has his sense of humor. When all of us were talking at once, he stopped and listened, and when we'd stop talking, then he'd continue on with what he'd been saying. I left the hospital with an uplift in my heart.

Today I was at the hospital from 8:30 this morning until 9:30 tonight, and it was one wonderful day. Amelia was also there until about 3:00 this afternoon. Todd's speech, physical, and occupational therapy were at 9:00, 10:00, 11:00, and 11:30, one after the other, starting over again until lunch time, and were exhausting. They continued again at 3:30 and 4:30. I learned so much about how the brain works, I could see how the strokes have affected Todd, and I could tell how dedicated the therapists are in what they do.

One of the things Todd is going to have to really work with is staying focused and not getting distracted. Noise out in the hall or with someone else talking in the room, or even someone dropping something in another room distracts him from completing sentences or from doing his therapy. At times, too much stimulation (noise, lights, etc.) makes him nervous. There was a big breakthrough today of discovering that Todd's eyes don't focus quickly when looking from something in the distance to something close or vice versa, and how to work with this. This is going to be ongoing while that part of his brain continues to repair itself. We started figuring out how to work with this. It takes Todd time and persistence to make his eyes focus so he can see objects plainly, read, and even see what he is eating. What a great blessing it is to learn of the miracles that happen with the brain.

Late this afternoon Todd made brownies as part of his occupational therapy to check his skills on reading, following a recipe, his reasoning in fractions, setting the stove, and following through. Except for sharing 3 large brownies with a motorcycle accident victim and his mom (and a couple of small brownies with Jenny and Carl), Todd and I ate the whole 9x13 pan of brownies. They were delicious with cold milk. We laughed about eating the whole thing.

Todd and I had a wonderful hour and a half talk tonight where we discussed things dear to us.

We also learned that his discharge from the hospital is still on track. The staff at the hospital feels like there's not much more they can do to help with his recovery that can't be done with outpatient therapy. His discharge could still be Wednesday, although Todd wants it to be tomorrow because he feels that is the next step to his recovery.

This afternoon in his physical therapy, we were given many papers with exercises for him to do when he first comes home. The outpatient therapy for all three areas will be intense, and there will also be lab work done at least twice a week. So, when he's home, our time will be kept even more busy than now, because besides taking him to appointments, the more activities we can do to keep him focused, and even the good sleep he can get will help his brain recover faster.

We want you to know that we are so thankful for all of your prayers being said for Todd and for all of us, and that the prayers are being heard by our Heavenly Father, and we feel the affect of them on each of us, and especially on Todd. There is no doubt in our minds about this. And we are so thankful for meals that are being brought to the house. After intense days, being able to sit down and eat something that has been so kindly prepared has touched our hearts. Thanks to all of you. Please keep remembering Todd in your prayers.

Friday, August 1, 2008

Day 18

Yet another brief post.  My dad said that after another call from the hospital, he and Amy were advised not to go to the hospital again today.  Tomorrow both plan to go.

They said that Todd had his therapy in his room, but didn't say much more than that.  I am sure tomorrow will have a lot more information.

Trust fund info

I went by my local MACU branch today to figure out what the issue was with people not being able to contribute to the trust that has been set up in Todd's name.

Evidently it was set up under the name Todd D Thelin Memorial Fund. So if you go in wanting to contribute, and give the teller his last name, they won't be able to find it. You have to give them that full name (never mind that 90% of people won't know his middle initial, nor is Todd dead or dying).

Thank you, from the bottom of my heart, to those who have already contributed to it, and to everyone who has brought and continue to bring meals to our house and to the hospital, watched Oliver, ran errands, mowed and watered lawns, checked mail, made phone calls, and prayed for us. Your generosity, love, and support are felt and appreciated, and I ask the Lord every single day to pour out his choicest blessings on you.