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.

Wednesday, December 17, 2008

Cognitive testing, round dos

I'm very negligent in my posting, I know. Todd did go back in for repeat cognitive testing a few weeks ago. It went well, we were very happy with the results. And I'm so sorry to be cryptic, but I can't really give you any more details than that until after we consult an attorney. So if anyone knows one who has expertise in insurance or disability, please let me know. We'll be deciding on one to retain after Christmas.

Todd has been doing well. He is close to being done with speech therapy (will continue to see her as needed on a consultation basis) and has started the long road back to driving. He took the written test and got 100%, and will hopefully be able to take the road test tomorrow with his OT.

Keep him in your prayers, he's so anxious to get back to driving, and it would help our family SO much if he could drive.

Saturday, December 6, 2008

A humble thank you

To our anonymous benefactor, who left a card on our doorstep the other day with a generous gift. I'm going to assume that you read this blog, and wanted to thank you publicly. It WILL help make our Christmas merry. A thousand thanks from our whole family.

Sunday, November 30, 2008

Progress check, thanks to visitors

We had family in town for Thanksgiving, from both of our families, which was a perfect opportunity for some outside perspective for me. None of these family members have seen Todd since before he had his stroke, so I was very interested to see how they found him now, as it's pretty difficult for me to see the incremental progress, being with him nearly every moment of every day.

I'm afraid that I kind of jumped on them for input, and I hope I didn't come across as insensitive or rude, but as I've told so many people, I don'thave the time or energy, or emotional wherewithall to beat around the bush, or worry about causing offence (or being offended, so don't worry, it does go both ways) or picking up on social cues or body language, or any of that. But the verdict was that he is changed, though not necessarily for the worse. That the stroke has aged him, or perhaps a better word would be matured him. He's slower, in movement, speech, and thought, and more deliberate. Which, if you knew Todd pre-stroke (or Todd v1.0 as his brother likes to call him) you would know that that isn't necessarily a bad thing. Todd's family kept forgetting that he had a stroke, and needed special consideration in things like noise level and physical labor. (Of course, they made every consideration, it was just hard to remember that he wasn't just tired, or on NiQuil or something normal like that.)

Todd has been making amazing strides lately. He gets himself up every day at a reasonable hour (before 10:00 a.m.) and I don't have to nag him to get out the door. In fact it's back to being pretty even as to who is responsible for making us late. Because we were never punctual people to begin with.

Each of his therapists are amazed at the progress he's made. He didn't see them much for a couple of weeks, due to illness (theirs and ours) and one was on vacation, and in that time he progressed a ton, though we didn't really see it at the time.

In talking to one of my sisters-in-law, I realized that I have a hard time quantifying Todd's progress, so I'm going to give it my best shot. In addition to the waking himself up (without an alarm by the way, which is more huge than it probably sounds) he can:

*Complete tasks with his therapists with relative ease that just a month ago were very difficult, both in the cognative ability to think it through, and generally stay on task with out getting distracted (and when he does, can redirect himself to get back on task.)

*Stay on topic in a conversation. When he does get tangential, it's a much smaller leap for outsiders to follow, and he's usually able to get himself back on track, or explain how he made the leap.

*Work on the computer. He has been doing a lot with our computer, and with my brother-in-law Devin's help, has replaced the power supply and hard drive, reformatted and reinstalled everything, backed up everything, and has been working on thelins.org, his family website, of which he was the web master. Other than the occasional hiccup, he's done great.

*Understand that some of the difficulties that he faces (like with crowds and noise) may never go away completely, but he is learing to compensate for his defacits in productive ways.

We hosted Thanksgiving Dinner for my side of the family at our house, and, well, it was a lesson in what not to do. It was just too much, for both of us, really. Oliver too, for that matter. But we were able to take some lessons from it, like that Todd really does need rest breaks, often, and needs to take them before he feels like he needs one. And that ear plugs are a good thing. And that we won't be hosting that many people again. At least, not for A LONG time.

The next big things on the horizon are getting him back behind a wheel, and repeating his cognative testing. In the next two weeks his OT will check out a student driver car, (the kind with the extra "just in case" set of brakes) and begin the steps to approve him to drive. They will approve him in incremental steps, for example, if he does ok with her, he may be able to drive on city streets, in the day time, without the radio, and with only me in the car with him, and move on from there.

The cognative testing will be done on Dec. 8th. We are hopeful that he will be approved to go back to work, but we know it may still be a little while. But things are progressing. I feel a lot more positive than I have in a long while.

The other perspective that I'm very interested in is when Todd's mom Sue comes to visit for Christmas. I know that she'll be amazed at how well Todd is doing, and she's really the only person who can give me an update from the perspective of someone who has seen Todd since his stroke, but not for a while. She was here for the month of August, basically from the time Todd was well enough to go home from the hospital, so I'm very interested in the progress that she sees.

I'm certain that all the prayers that are still offered in Todd's and our family's behalf are being heard, and the blessings are felt. I'm so grateful for all of you and your support. I'm grateful for the power of God's holy priesthood, and having worthy holders of it in my life, who were able to give not just one, but MANY blessings each of which independantly promised Todd's full recovery, which we are seeing in action before our very eyes. God is good.

Thursday, November 13, 2008

We are still alive

This is a cross post from my other blog, but since that one's private, and I thought this pertained to this blog as well, I'm posting the same thing on here. If you read both, please forgive my redundancy.

It's been forever since I updated this blog. Or Todd's stroke blog. We're here, though. Still alive. We haven't dropped off the face of the earth, and we don't hate you. We've just been involuntarily booted off line for a while.

Our hard drive crashed, and we stopped breathing for a second (or a couple days) thinking we'd lost everything. Everything. All our pictures. Thankfully, Todd was able to recover it, the hard drive had not completely failed, but we went ahead and bought a new one (along with a new power supply) so that we could sleep a little better at night, knowing that all our precious data was safe and sound. Merry Christmas to us. Then we had all the fun of new installs, etc, and yadda yadda, we're finally back on line.

And thank goodness. I was starting to freak out, not being able to do my on line banking. Et Cettera. I wish I were one of those people who could disconnect and be happy about it, and go about my day buisily saving the planet or what not, but I can't. I'm not. I (heart) the internet, peeps. Can't live without it. And now that we're back on line I can tell you some good news.

Todd was awarded Long Term Disability through his (former) employer. It's not enough to live on, but it's enough to pay our mortgage. And he will receive it as long as he is eligible, until he's 65, if need be (which it won't, right? Right?) They will also help with him with returning to work, or vocational training should he not be able to return to his chosen career (it's called Vocational Rehab, I think.) And, as our caseworker pointedly told me, as a caregiver to a brain injury survivor herself, they have benefits for caregivers too. I'm guessing in the form of crisis hotlines, or counceling, or some such.

The other good bit of news is that our COBRA insurance has FINALLY been reinstated, so we can start billing all Todd's spendy drugs to the insurance company again. And be reimbursed for the $1000+ we've paid out of pocket this month. Yep, like the 2-month supply of one that I was lead to believe he'd be on long-term, and was rapidly transitioned off of. And several others that we paid for before I had the good sense to start filling in week-or-less incraments. You survive a stroke, but then the cost of the medications will kill you with a heart attack. Can you say $20 per pill? F'reals. And oh yes, COBRA is not cheap. But we only put Todd and Oliver on it, and part of the LTD package includes them paying some of Todd's portion, so really, we're pretty lucky. We're not paying the most you've ever hear of. Though it's still not cheap. And hey, if you know anyone who takes Lyrica, Depakote (generic) or Depakote ER, send them my way. We can trade for something. Say, money, for example. I'm not saying I'm a drug dealer, but if we have it and don't need it, and you need it but don't have it, well, it seems silly not to work out something to our mutual benefit, no?

So, the good news I suppose is that our savings will last us a little longer. There's still this dreadful day of recconing looming out there in the murky future, on which a decision will have to be made about what to do about the ever dwindeling savings, and lack of gainful employment, but I've given myself until after the first of the year to acknowledge it. Because there's just no way I'll be able to get throught the already hectic and stressful holiday season (made moreso by said dwindling and lack) if I also have to worry about finding a job, and all the logistics that go along with Working Mommy, Disabled Daddy, and Special Needs Son. Ug. And here comes the panic attack, right on cue.

I thought I'd apply for WIC, since we have no money, and strangely still need to eat. I guess I should have gotten on the ball sooner though, and done it before the LTD was granted, because now apparently we make too much money. I suppose I should be happy that even living off disability we are above the federal poverty line, but it just puts us back into that damned if we do, damned if we don't situation that has plagued us since Todd's stroke. We don't make enough to be self sufficent, pay all our bills, but we make too much (or have too many "liquid assets") to receive any aid from the programs that we've been paying into since we were 16. This is why people declare bankruptcy, and forclose on their homes.

At the risk of this post being a total downer, let me reassure you that we DO see the blessings. We have been blessed beyond measure, and recently another blessing was brought to our attention. We met a wonderful guy at LDS hospital, who happenes to be a survivor of a nearly identical stroke. However this man has suffered more physical imparement, and has no use of the left side of his body, and as such, is confined to a motorized wheel chair. Which Oliver, incidentally, thinks is just about the coolest thing since Yogurt. We had the opportunity to get to know him better, and meet his wife at the Brain Injury Support Group (which was fabulous, by the by) and decided that we need them to be our friends. When we got home that night, Todd and I were talking about getting together with them, and it struck us that it wouldn't be possible to invite them to dinner at our house. For starters, there are at minimum 4 stairs to even get into our house. Add to that that the bathrooms are either up or down a full flight fo stairs, and it hit us. How lucky are we that, with all Todd's dealing with, he has full use of his body. He can go up and down stairs no problem. Feed and bathe and dress himself. Heck, we raked and bagged leaves this morning. I can't even begin to think of what we'd be facing if Todd had suffered the physical affects of the same stroke, just after purchasing this stair-ridden house.

So blessed? Yes. Beyond measure. Thankful? Very. Still in need of lots and lots of help? Um. Yes.

Stay tuned for a very sad and pathetic post of things that we could really use help on. Cause this one is too long and already depressing enough. And I'm tired, and going to bed.

Tuesday, October 14, 2008

Dang it, I forgot to take pictures!

We all managed to get out of the house by 10:00 today, which I'm pretty sure is a record of late. Unfortunately we were headed out to get to a Todd appointment which was at, you guessed it, 10:00. Fortunately it was with a therapist who happened to have the morning free, and was kind enough to consent to moving the appointment back to 10:30. Oh yes, and we were still a few minutes late. But it was all good. Oliver had a great time playing in the waiting room again, and gave lots of hugs to Diane, the secretary, who adores him. And he didn't break anything. Or throw up.

Got home and had some lunch, then Oli went down for a nap, and Todd and I worked in the garage some. Schlepped some boxes into the house, moved some stuff around, and then Oliver woke up, so that put an end to the productivity, at least where I was concerned.

Todd, on the other hand, rocked it. His slave driver, eh hem, therapist Heather came to our house for today's session to check him off on doing man-things required around the house, such as mowing the lawn. Thankfully, even through the snowstorm which had blanketed the mower for a morning, it still worked, and Todd was able to successfully mow the entire front lawn, thanks to some help, in the form of gas, from a neighbor down the street who happened by at an opportune moment (thank you, Doug!) We truly have the best neighbors. He also lent us his weed whacker, (is whacker spelled with an h? Wacker? Whacker? I dunno) so that we can edge the grass, mow down the nasties on the side of the house, and 86 the ground cover creeping out of the cracks in the drive way. However, that will probably be my job (or that of some helpful person who may stop by at some point looking for something to do. Hint hint, fathers :) ) Todd also got out a ladder and trimmed away the branches of the crazy alien bush/tree thingie that is trying to escape from the neighbor's yard, and which was scraping against the side of the house and giving me the willies at night. And he didn't fall off the ladder or cut his arm off. He did scare Heather and I though with a comment about seeing if he can find a hedge trimmer to borrow to trim back some more overhang further down. However at our terrified and "is he talking crazy? He's got to be talking crazy" looks, he reassured us that HE would not be using it, but volunteered his dad to wield the mini chainsaw. So if anyone has one of those, can we borrow it for Todd to NOT use?

Soon after Heather left, it was time for dinner, so I grabbed Todd tacos (Tuesday is Taco night at our house, thanks to Del Taco's 3/$1 deal!) and then Oliver and I went to the church for enrichment night. Hurray for nursery! I had a good time (though I still feel as anxious as a new kid in 7th grade) and Oliver did fine, I think.

So all in all, a highly successful day. Cause did you notice that there was no mention in there Todd taking a nap? Nope!

Monday, October 13, 2008

Back on the grid

We got the used phone my mother-in-law sent today, and got it charged up and connected, so Todd once again has a phone. And I can once again call him from the store/car/preschool/basement. Such a relief. It's been ridiculously difficult for the last little while without us both having phones, and no house phone.

Thanks Sue! We'll try really hard to keep it out of the dog's water this time.

Sunday, October 12, 2008

The cold hard facts

Last night Todd went in for his sleep study. He'd argued with me all day about it, and kept trying to get out of going with excuses like "Oliver's sick" or "You just want me to go because you can't stand the snoring." Both of which were true, but I had to insist that he go for his own health. Our neighbor, who came over to assist Todd with a blessing for Oliver, finally convinced him of the benefit of getting it taken care of sooner than later when he told Todd about a friend of his who now has heart trouble and has to be on oxygen 24/7 because he didn't.

So off we went to drop Todd off at the ICH Sleep Disorder center, which is in a little house by Fashion Place Mall. Then Oliver and I returned home for a fun night of single-parenting a sick kid. Miraculously, Oliver went to bed after eating some yogurt, and slept all night. I, on the other hand, didn't get much sleep, and 5:30 A.M. came knocking awfully early.


Especially when I woke up to this:


Snow, people! And it's not even half way through October! With current energy costs I had high hopes of being able to tough it out and not turn on the heat until November. But with a sick kid, and now snow, it's time. And of course we haven't been able to get space in the garage to park the car yet. There's space, but it's not all together. We'll work today on combining those chunks of clear space, and see if we can't get a spot big enough for one car and one scooter. I'm hoping and praying that we get another warm spell before winter hits in earnest. I knew this storm was coming, but we still weren't able to do all that we needed to do to winterize the house/yard. Today sprinklers must be dealt with, next week I must look into adding insulation in the attic, getting that space in the garage, and if it dries out, mowing the lawn one last time before getting the mower emptied and stored.

Despite the snow, we made it home without incident, and Todd headed straight back up to bed. We should get the results of the study in about 4 weeks. Nice.


I, on the other hand, will not be getting any more sleep, because Oliver decided that he's up for the day. At least he seems to be feeling better.

Tuesday, September 30, 2008

Gratitude

Someone recently commented on my personal blog that a remark I made to her in a time of need really helped, and it helped me to know that something I did/said helped someone else. To that end, I hope that what I have to say will help someone else in like manner.

I've been thinking a lot about gratitude lately, and I have a lot to be grateful for. Recently I went to the credit union branch to deposit a check that was given to me, and when the teller handed me the receipt showing the current balance, I was amazed. It brought tears to my eyes to see the generosity that people have shown to our family. I know who a couple of you are, but I won't mention names or specifics on here because I don't know who to thank for the anonymous contributions. But I wanted each of you to know that I am grateful, and that it has helped us tremendously. As the bills have now started coming in, I'm flooded with relief and humility when I'm able to just write out the check. Well, I pay on line, but still. To know that I don't have to stress about where that money is going to come from, it's just there, thanks to you wonderful people, waiting to be used. Thank you, each of you, from the bottom of my heart.

I also have been aware lately that many, many people are reading this blog. Just the fact that you read means a lot to me, to know that you care enough to check the blog. I've added this site to my Google analytics, so in a few days I should have some stats to report. Should be interesting, and I wish I'd done it a long time ago. Ah well. However the point is that because so many of you read, including family, friends, coworkers, ward members, neighbors, etc, I wanted to publicly thank some people specifically, to recognize them, let them know that they really did help, and made an immediate impact on our family, and my ability to cope with the present (on going) Trial.

My sisters. Especially Tali and Halley. When the chips are down, there's no one I'd rather have on my team. They were my right and left hands when Todd was first hospitalized, fetching and carying, tending Oliver (for days at a time) watching the dogs, getting Todd's stuff from work, setting up the trust fund, and myriad other tasks that I just couldn't have done myself.

My mother-in-law Sue, without whom I would certainly have been shipped off to the funny farm long ago. For coming, and staying, and cooking and cleaning, and tending, and listening, and understanding, and advising and helping. 2

My Neighbors, Jan and Jim. Saints in the truest sense of the word, I'm telling you. Thank you for being allert to something being not right at our house, and caring for a couple you'd barely (if ever) met. For checking our mail, keeping our garrage opener, watering the lawn, and for sitting by me in Relief Society.

Our Hometeacher and former Elders Quorum President, Jason. For checking on us, mowing the lawn, and just being there.

Our dear friends, Misty and Jake. I couldn't ask for better friends. For pinning me down and making me take the time to go to the temple. For watching Oliver, letting the dogs out, and for listening to me complain.

Our wards, past and present, especially Anne and Kathy for organizing them, for all the dinners both at the hospital and in my freezer. "That there shal not be room enough to receive it." Very nearly.

And Everyone else, for the prayers, the fasting, putting our names in temples around the world, and the continual support and love. Please know that each and every night we pray for all of you, and ask for the choicest blessings in your behalf. Please know that you made a difference.

Saturday, September 20, 2008

Just a quick FYI

For the time being, if you need to call Todd, you'll have to call my phone, as his now out of commission, until we buy a new one. Side note, anyone have an old Verizon phone we could use so we don't have to buy a new one? It should be an old one that you really don't need back, as it's highly probable that it will one day meet the same fate as it's predecessor, that of Death by Dog Water.

The joys of Two.

Don't ask me what the draw is, but for some reason Oliver finds it fascinating to abscond with random articles (sometimes his own toys, books, shoes, sometimes random household junk, sometimes small electronics, i.e. cell phones, PDAs, PSPs, remote controls, cordless mouses...) and scurry stealthily up to our master bathroom, where the dogs water was safe for a blissful 3 seconds, and make like Michael Phelps. But here's the weird part. He then grabs the little swimmer out and pulls up his shirt and sticks it, dripping wet and cold, on his bare belly.

???

Yeah. Either that, or sometimes he just sucks the icky disgusting dog-backwash water off.

Oh, and while I'm on the subject, if you're at our house, you might want to leave your valuables in your car. Unless they are waterproof. Or you are looking for an excuse to get a new one...

Tuesday, September 16, 2008

The Marathon is over

I'll have to post a longer explanation later, when I'm not so tired. Please be patient. It was a Long day.

We got up at about 8:00, and I'm thrilled to report that after Monday's fiasco, which I will not go into other than to say that Yours Truly is utterly ashamed and contrite after her two-year-old behavior, Todd got himself up with no nagging on my part, got himself ready to go, and then asked what he could do to help me with Oliver. I was (am) very proud of him, and this was after we both stayed up way too late talking to one of my sisters.

We didn't have anyone to watch Oli, so we had to take him with, which was... not ideal. None of us, Oliver and the doctor included, were happy with the arrangement, so Oli ended up at another sister's house, while Dr. Cain took Todd through his paces.

The point of today's testing was to determine how Todd is doing cognitively, as compared to the testing that was done when he was an inpatient at IMC. Again, sorry to leave you hanging, there's really SO much that went into it, but suffice it to say that Todd is very much improved. No real surprise there though. He started at close to normal in a couple of areas, including his reaction time, but in other more complex, or "executive functions" he was well below normal, and the testing today revealed that he is now within the range of normal. He's still not yet up to par to where he probably was pre-stroke, but as he didn't do the tests before he had the stroke, that Todd Normal is pretty much an educated guess.

The Dr. said that based on the reports that he got on Todd before meeting him, he expected him to be "much worse" than he found him to be. So that was really good to hear, for both of us. We're both there, in the trenches day in and day out, so it's nice to receive that kind of feedback. Incidentally, the sister that we were up too late talking to hadn't seen Todd in about a month, and she, too, commented on how vastly improved he was in that time.

We learned an aweful lot about the brain, and more specifically, Todd's brain. How it works. How it doesn't work, and how it tries to compensate. Very technical stuff that I found terribly fascenating, and I think Todd found terribly frustrating and discouraging.

I was left with a profound sense that as sucky and crappy as things are now, they won't forever remain that way. I found an incredible amount of Hope in the things that we discussed, the things that I learned, and if finally. Finally! understand what Todd means when he tells me, on a daily basis, that he "hates this." Essentially, it's very difficult for people, (raises hand) to remember that though Todd appears fine in so many ways, that he's not "better" yet. That his excessive sleepiness (15-is hours a day?) is not an indication of apathy, depression, or laziness. The location and type of stroke that Todd had is rare. The rarest (that's my guy! When has Todd ever been typical? We scoff at typical!)

And this was a huge wake-up call for me (as I know it has been for many people.) For me it was the reminder that my role is to be Todd's wife, not another therapist. He has enough therapists, but I'm the only one who can be his wife. And it's going to be really, really tough for me to take that hat off. I mean, I've been wearing the Therapist hat along with my Mommy hat for Oliver for two years now. And I was just lumping them all together, but it's really not the same at all. Oliver's learning things and making connections for the first time, where Todd already knows this stuff.

As you have probably read previously, the Thalamus is the brain's message center. So where typically a stroke survivor has some paralysis, or speech affectation, because of the location of Todd's stroke, the affects are much more far reaching, but minute in detail, much less noticable to the casual observer.

Mostly the messages aren't getting to the frontal lobe completely, or correctly. The frontal lobe deals with the mind's executive funtions, or the more complex reasoning and decision-making. Messages come in from the eyes and ears (mainly) and the brain then makes decisions, judgements, and connects meaning based on that information. Well, when the information is not relayed completly, the brain automatically fills in the gaps by making educated guesses. If it's a small gap, it's pretty easy to form an educated guess and be pretty close. The further the gap of information, the less educated the guess is. As the Dr. explained, a person could say something and mean X, while Todd understood Y. And everyone else around got X, and can't understand how Todd got Y, and why he just can't understand X. And they get frustrated and upset because they think he's being "stuborn" or "unreasonable." And Todd gets frustrated, because he know's he's missing X... You can see where that could cause problems.

It made a lot of things that have happened in the past 2 months very clear, and I finally get it. I hope I've been able to make this make sense to you all. Because as you who know him and have talked to him have probably noticed, he makes some pretty weird comments, and you're left wondering... "Huh??" Yeah, it makes no sense. To you. To Todd, it made perfect sense. So please be patient with him.

Oh, the other thing is that with this kind of stroke, it can create a lot of "psychological" symptoms, like depression, anxiety, etc. that are not truly psychological. Meaning that in that respect, the problem is not metaphysical. Damage to that area of the brain affects emotion and mood. So Todd could seem depressed, but mentally, at least psychologically speaking, he's not. Ten you add in the complication that he's been (is going) through a traumatic life experience, and you get the situational stuff... Ok, that's a much more abstract and confusing concept, so if that makes any sense, great. If not, forget I mentioned it.

And I just realized that through my sleep-deprived fog, I've pretty much written about everything. If I remember anything important later (i.e. tomorrow, after I've gotten a little sleep) I'll post again.

Tuesday, September 9, 2008

Life rolls on

Saturday we celebrated our 11th anniversary. Todd took me to Wingers. Don't laugh, I know it's not all romantical, but it's good food, man, and it sounded good to both of us, and that's rare!





We had a great time. As we were finishing and getting ready to pay I ordered us a last round of drinks. The hard stuff. Vanilla Coke for me, and Cherry Coke for Todd. As he reached for the bill he inadvertently clipped his nice full glass, which in turn clipped his plate, broke into smitherines, and flooded the table, his lap right down to his Crocks. But don't fear, it somehow managed to miss the wings!

I insisted on photographic evidence. Contrary to how he looks, he wasn't mad, we had a good laugh, and the waitresses all probably thought that I was a horrible person. But it's for posterity, people!


We finally got Todd's contacts prescription. Thanks to a very kind secretary we didn't even have to pay for a contact fitting in addition, and she faxed it to Coscto the other day. Today Todd put his contacts back in, and while it will take some time to get readjusted after wearing glasses (and of a slightly different prescription, no less) for so long, he said that it is helping his vision. It didn't fix the looking problem, but at least now when he moves his eyes he can focus, and things in his periphial vision are not blurry.

Sunday we had a meeting with the bishop. He wanted to check on us and see how we were doing. I learned a lot about how Todd's mind is working in listening to him have a conversation with some one else. We talked about it after the bishop left. It's like his mind or his mouth doesn't know when or how to stop. So he gets to a point in what he's saying where normally you would pause, and the other person would interject something, but since his brain doesn't know how to stop, he just says "um" and then continues talking. And if he's exhausted what he's talking about he just starts talking about the next thing that his mind jumps to, and then he gets distracted and says things that he doesn't really mean. Or they come out wrong. So we talked about him noticing when he says "um" and just stopping there. We'll see how that works. It's pretty interesting to have to analyze the nuances of conversation dynamics. To borrow what someone else said, it's like Todd has to think about himself like he's on the outside, and at the same time, multi task that with actually having the conversation, finding the words, keeping on topic, organizing his thoughts, making eye contact, etc. All the things that we do normally without thinking about it. He has to think about it. Try it for a minute, or the next time you have a conversation with someone, and you'll get an inkling of how difficult it is, and how easy it is to get side tracked and distracted.

I wanted to bring this up today in his Speech therapy (which we have renamed Cognative therapy) but we took Oliver with us since it was only the one appointment, and we were running too late to drop him off at Auntie Tali's house. Next time...

The office staff there had a blast with Oliver. The secretary Dianne let him play with her resin frog, which he promptly broke. Then an OT brought out some of the therapy balls.

Oliver loved this planet-sized orange ball best. He pushed it clear down the hall, around the corner, and all the way down the next hall. Then I chased him back with it.



Dianne found some grahm crackers for Oliver to eat, since his mommy forgot not only toys and entertainment, but snacks too.



Oliver playing ball with Dianne


We ate lunch at Mickey Dees, then jetted home to drop off Todd, pick up the dogs, take Oli to preschool, take Doggies to the vet for shots, jet back, pick up Oliver, and finally return home. Exhausted. Cause in all of this running around poor Oli didn't get one speck of nap. He muscled through, getting punchier and clumsier as the day went on.

Phew. And now I've spent WAY too much time on the computer getting some "me" time in. Tomorrow is more therapy, and we have some guys coming to measure and give us an estimate on windows. Fun fun.

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.

Thursday, July 31, 2008

Day 17

Brief updates again today. Todd is still sedated from his activities yesterday and as of early this afternoon was only brought to a low state of consciousness so he could have nurses feed him. He didn't have any therapy today so he could rest and try to recover. The doctors changed up his medications and hope that this new mix will help him to better control himself.

Again, don't plan any visits yet. From my understanding, tomorrow will be the first time my dad or Amy will be back to the hospital. My mother will be arriving on Sunday afternoon to help as well.

I know there will be many who will want more details. Unfortunately, I don't think it is my place to give any more than I have. I want to keep the Todd community updated, but I also don't want to delve too far into the negative. Over the course of his healing there are going to be days like this. For those who can't be here, knowledge is a way to stay connected, but without the continuity or context of involvement, details can lead you to wrong thoughts or assumptions.

What I am trying to say is that I want to keep things positive, but real. I want to show the whole picture, but not get into the brush strokes. I want to help each of you understand, but not be so keenly aware that it haunts you.

I also don't want to sensor or edit anyone else. This community is a fantastic way to help each of us heal as well. Todd may have suffered the stroke, but each of us has suffered something too. Coming together and communicating will be our recovery. So please, continue to express yourselves here, positive, negative, or in any way.

Over the weeks and months to come, you will hear from at least four of us. Amy, Sue (Todd's mom), Al (Todd's dad), and myself. Sue and Al will start to add more soon. I am sure you will enjoy their perspectives.

Wednesday, July 30, 2008

Day 16

A call from my dad indicated that Todd had a tremendous amount of difficulty today. Because of that difficulty they had to remove items from his room and sedate him. After talking to the staff psychologist, he found out a few things.

First, basically this is an extension of his no-filter problem. Except in this instance, it means no brakes on his emotions or physical temperament.

Second, this isn't the first time, nor the last time these kinds of difficulties have or will occur with patients on their floor. It is not uncommon, nor outside of the healing process.

Third, they indicated that while they wouldn't allow Todd to leave without a better probability that these types of difficulties won't happen, it may not impact his anticipated release from the hospital next week.

They will work on his medication and treatment to include this type of behavior, but for now, visitors are not a good idea and will probably not be allowed.

Wonderful Insight from Suravi

Suravi, a friend of my mother's in India, sent me an e-mail this morning.  It was a welcome perspective and it helped me in my thinking so much that I wanted to share it with everyone else reading the blog.


Well, let me introduce myself- I am Suravi Mukherjee and I work with Sue from India.
I heard about Todd from Sue and believe me, I was taken aback.
I make it a point to read the blog about Todd, of what you write every day.
Trust me you are doing a great job.

I also kept the-“Fasting Sunday”, with your entire family member for Todd and our prayers have been heard.
I was a silent reader of your blog till date but today when I was reading the blog, I thought I should speak up, because my suggestions may help you guys to cope up these kind of situations.

My mother-in-law, also had 5 strokes, 3 years back which was much worse than Todd, she was in COMA for more than 16 hours and had an operation much serious for 7 hours. Doctors had given up all hopes of her surviving and said us very clearly that if she survived she will never the same person.

That was 3 yrs back but today she is just the same person what she was before.

I have seen it all. What emotional busters Todd is having is a GOOD sign. That means his thinking ability is coming back slowly he has not lost his mind J
Bear with him please and these will continue 2-3 months. Let him think on his own.
That’s what I wanted to share, with you...

Don’t stop writing……

Monday, July 28, 2008

Day what ever. It was a bad one.

Todd is really starting to struggle. He has a lot of anxiety that is both brain injury-induced and environmental/emotional. Meaning that some of it is real, and some of it is "imagined," if you will. He gets facts and conversations confused, and even the smallest innocent comment can leave a lasting, hurtful impression on him, even if the speaker was only making a joke or teasing in fun, and trying to communicate how he feels leaves him frustrated.

After a rough afternoon with his dad, I was at the hospital with him for the rest of the day, and it went downhill from there. He had a couple of visitors, and was getting more and more visibly agitated, and after I hurried them out, he asked for a coke. I thought drinking more caffeine was not a good idea, considering his level of agitation already (legs bouncing around and fingers tapping uncontrollably) and I told him so, which apparently was the straw that broke the camel's back. He began arguing with me, and his arguments kept changing, and when I pointed that out, he just got more and more worked up, until eventually he told me to leave and asked the nurses to take me off all of his charts. The nurse came to try to get him to take his medication, both his regular meds and something for the anxiety, and he refused. The massage therapist came hoping that a massage would help reduce it, and he refused. Finally they advised me to take a break and give him some space. After a little while he fell asleep, and the nursing staff told me to go home and get some rest. (And here I sit at midnight typing instead of sleeping.)

His nurse put a request in for the neruopsych to see him tomorrow, and see if his medication needs adjusting or what can be done to help. I have been advised not to take any of it personally (easier said than done) because as they said, it's not really him. He may or may not remember even being like this later. And they have also said that his behavior is mild compared to some stroke paitents, who have been known to hit, kick, slam doors and fling urine, so I suppose I should be thankful.

Please when you visit, resist the urge to speak for him, to finish his sentances, and to make decisions for him or talk down to him. He needs to feel like he is a grown up, and this is HIS therapy, and take ownership of his recovery. So the lesson here is for visitors to keep their visits VERY brief, like less than 15 minutes, and for all of us to take a deep breath and renew our will to be patient with Todd as he struggles through to recovery.

Saturday, July 26, 2008

Day 12


Today I went up and stayed with Todd for an hour and a half while my dad had his hair cut and Amy was picking-up Oliver for a visit with Todd. I was also able to be there for two of his therapy sessions: speech (ST) and occupational (OT).

The speech therapy revolved around helping him reconnect with his vocabulary. Todd did very well and was only off a little by things that probably would have stumped me. Occupational therapy had Todd playing a game of checkers with the therapist. Todd was able to move the pieces well and understood the rules and strategy. A couple times we had to ask him if he really wanted to make a certain move, but I do that with my kids and they do it with me all the time too.



We also walked around and Todd introduced me to his "gang" of nurses and therapists. He also brought me to the dinning hall where we got a soda and some crackers. Back in his room we talked about the view out of his large window and worked on playing with a PSP. He had a little trouble, but was understanding it very well. In my opinion, playing games like that could probably help. But that would be later, after he gets the basics down. The good news for me is that I might actually have a chance to beat him at some games; for now.

Looking Out the Window

video
Another video for those who want a little more multimedia experience with Todd's recovery. Keep in mind that I had the camera down and away from my face so he wouldn't be self conscious.

Thursday, July 24, 2008

Are we still on day 10?

Adding to what Brett wrote below, I have a few comments.

In regards to the therapy of today. Most of what Todd did today was more on the evaluation level than actual therapy. They were establishing baselines so they will know where he needs help more, and also as a means of seeing progress. You gotta start somewhere, that that somewhere is what they were looking for today.

The speech therapist is Emily (not Oliver's OT Emily, though I think she works at IMC somewhere) and Todd thought she was "really pretty" and apparently had a hard time concentrating on her questions, so he kept closing his eyes (then he got smart and looked at me instead.) She did ask him "easy" questions like the month, who is the president, etc. She also tested him on "story" problems, where she would read a story, and then ask him questions about it to establish language comprehension, grouping questions, like "what would you call water, paint, and cream?" (Answer: liquids) She did them in groups, to show pattern (What would you call a camel, a chicken, and a dog? Answer, animals) She asked him problem solving questions like "what would you do if you were driving and ran out of gas?" She also checked his oral motor skills, which as Brett reffered to, are fine.

I missed PT, so I can't give any more details on that, however I was there for OT. The OT who saw Todd today will probably not be his premanent person, so I didn't bother remembering his name. He was great though. He started out with sequencing puzzles. He gave Todd cards that had pictures which told a story, and had Todd put them in the proper order. Todd really struggled with this, but got it right with help. Next was a peg puzzle, which was timed, and Todd had to complete it with each hand seperately. They checked his hand strength, and found contrary to what PT found, it appeared that his left side was the strong side. They established this by having him squeeze various aparatuses that measure how hard he is squeezing, in various positions. He made the therapists day when he was asked, in order to establish how they could gear his therapy toward Todd's interests, "WHta do you like to do?" and Todd thought about it, grinned, and pointed to me. I told you, NO filter. We all blushed, and of course Todd had to go into more detail.

After OT he was exhausted, and had a nap, and a shower. He had some visitors then, the Taylors from our old ward stopped by, Bobi's grandfather is in the room next to Todd's. Todd did remember them, but not their names. They stayed for a few minutes, then he had dinner, and was ready for some more rest. I left to go get Oliver at just after 6:00. He has his cell phone to call me if he needs me, but hopefully he'll have a quiet night. He is still under 1:1 care, so his CNA will be with him through the night, but I anticipate (and hope) that that will not be needed soon. His balance is improving all the time.

Day 10

Since my wife was sick with a stomach flu, I didn't head up to see Todd today. However, a call from my dad brought some news.

Despite what I said in my last post, today was the first day of Todd's aggressive therapy. I guess the holiday didn't phase the therapists after all. So early this morning (9:00 a.m.) Todd was walking up and down some stairs by holding on to railings, walking for about 20 minutes, and doing other activities.

During this therapy, they found he does have a side that is weak. This means that the stroke did affect one side of his body, but it isn't very pronounced. His left side is the weak side. Another problem is that even though he can't walk well on his own or do other physical tasks, he thinks he can. This basically means that he can't be left alone at nights and there is a "fall risk" sign on his door.

He also had speech therapy, occupational therapy, and something like everyday living therapy. Some of this therapy consisted of four pages of questions. My dad said these weren't questions like, "Who is the president?" and "What is your son's name?" They have asked those questions, but these questions were like riddles. Things that could tell the therapist how Todd's brain was processing information.

I don't have a lot of detailed information from the therapists, but I'm sure when Amy checks in again she will have that kind of information.

I do know that the doctors and therapists continue to be amazed at his progress. Physically, mentally, and with his speech. He also has continued to sleep a lot. This should be standard now. The mental, emotional, and physical drain from the therapy will be rather immense.

Another positive side is that Todd eats a better breakfast than I do. This morning he had bacon, eggs, and potatoes with onions. He is on the "advanced" diet.

Wednesday, July 23, 2008

Finally checking in


Transport to IMC. We got to ride in the van this time.
Hopefully that will be a little cheaper than the 2 ambulance rides.
The "Hilton" of hospitals. Todd's new digs.

Oliver's visit with Daddy yesterday.
He said "ba" then just wanted down on the floor to play with his cars.

Hi family, friends, ward members and random blog readers. I'm finally home, first time in weeks, and able to check in.

Several people have asked about Todd's prognosis, now that he's in rehab, so I thought I'd fill you all in on that.

As previously mentioned, Todd has been recovering and healing at a remarkable rate, even to the doctors. From what I understand, a faster recovery at the outset is a good indicator of how far his recovery will go toward completion. And if this is any indication, we should all be able to look back on this experience and laugh (with greater wisdom and humor) in no time. His dad is convinced that he'll be a few weeks in the hospital and some time at home, and be back to work and daily life very soon. I'm currently leaning on his faith on that one, and remain very hopeful.

It must be remembered, however, that Todd has had not one, but three strokes. There is tissue in his brain that has been killed (my word of the day, Cerebral Infarction.) The brain has amazing, and not fully understood powers to heal, reorganize, and repair itself. Todd is very lucky to have no paralysis, or even much discernible weakness in his body. Those are very good things. Where Todd is struggling now is from the neck up. He is experiencing some very common effects, such as:
  • aphasia - problems remembering words, names, finding the right word, etc. He gets caught mid-sentence, and gets stuck until he is reminded of the word, then can continue on. He can't remember new names well (like names of nurses etc) or people's last names, and replaces them with a similar sounding name (like Becca=Brooke, Terry=Ted, etc)
  • emotional liability - sudden and sometimes inappropriate emotional outbursts. Like his emotions don't have any brakes
  • sensory deprivation - because he can't see well, his visual sense is somewhat deprived, causing him to get overwhelmed when exposed to multiple conversations, or too much going on. This can also cause anxiety, hallucination, depression, and bizarre thoughts. I mean more bizarre then the pre-stroke Todd.
  • cognitive problems - memory problems, abstract thought/reasoning/problem solving
  • inappropriate social behavior - where Todd didn't have much of a "filter" before, he is completely lacking one now. He is apt to say and do things that he would have previously only joked about doing
I tell you all this not to make discourage or worry you, but to give you a more realistic picture of what he and our family are and will be dealing with in the months, and even years to come. Knowing that he can walk, talk, eat, and toilet with less and less assistance are all wonderful things, but they are not the complete picture. These will have much more far reaching effects, and to the casual observer, and even to himself, he may appear to be fully recovered and capable of doing things when he's not. Like driving, for example.

As Brett mentioned, they expect him to be in in-patient rehab for approximately 2 weeks, and will then release him to go home, at which point he'll begin in home therapy, similar to what we do now with Oliver. Todd is a survivor, and he has come an incredible distance so far, but the journey is not yet over. Please be patient with him, and with those of us who will be helping him on his way to full recovery.

I have a lot more to write, but as usual, the day isn't nearly long enough, and it's already midnight, and I need to be at the hospital early again. Thank you everyone for your prayers. Believe that they are being felt constantly. I'm still standing, not a puddle on the floor, so that should be proof. All my love.

Day 9

I have a quick update and will post more later.

Todd is in his new room (1203) and apparently it is even bigger than his old room that held two people. There is a couch and plenty of room to move around. This is good because now Todd is up and getting around the room on his own.

It has been an emotional morning for Todd. He has shed some tears and felt pretty tender. This doesn't mean you shouldn't come visit if you are planning on it. I am feel confident that he would still like to see you.

Speaking of visiting, the reason he won't start the aggressive therapy until Friday is today was his transfer day and tomorrow is a state holiday. This means that the post 4pm visiting hours won't take effect until Friday. So if you can only get away in the pre-4pm hours, come today or tomorrow.

Tuesday, July 22, 2008

Day 8

Those who don't know, I have been at Cub Scout Country for the last two days. While the first day was fun, it wore me out. The second day of Cub Country, after being worn out from the first, just cleaned my clock. So I didn't make it to see Todd. But I do have updates from Amy and my dad.

Aparently, while Todd is still sleepy and slept quite a bit today, he is doing even better than yesterday. Since according to my experience, yesterday was pretty amazing, I can't wait to go visit him again.

They moved him to a new floor today. Now he is on the 6th floor. Aparently they received a bunch of urgent patients, so they transfered the healthiest patients.

As my mom added in her comments to yesterday's post, Todd is now disconnected from all of his tubes. So the change from yesterday is the removal of his catheter. Man, that even feels painful to write. So when you go to visit, only the heplock will be on his arm. The heplock is an IV needle and a little attachment wrapped on his arm so if an IV is necessary, they can just plug it right into the attachment, and not waste time putting in an IV needle and affixing it to his arm. For just about anyone in a hospital it is required until discharge.

Todd was also taken him off the soft diet today and can now have "regular food." The quotes mean that regular food is healthy food. No pizza, hamburgers, fries, etc. Food within healthy reason. That means no sneaking milkshakes people. If you really must bring a milkshake, make sure I'm there and order chocolate-banana please.

The LDS hospital representative came in today and after an evaluation said they will transfer Todd to the IMC hospital tomorrow at 10am in an IHC van. IMC on 5121 S. Cottonwood Street (maps and directions) and the building he will be in is 12 stories high (Todd's room will be on the 12th floor). He will have his own room and it should have a pretty good view of the valley. IMC is a new facility with new equipment and some of the best doctors in the area.

There is a new visitation policy to go with the new hospital, so everyone should note this if they plan to visit. Since he will be in the physical therepy area, they will be working with him in the morning and early afternoon. Therefore, visitors can only come after 4:00 PM. It is a pretty vigorous program and they will work him pretty hard. In fact, they have said that by evening he will have dinner and probably fall right asleep. Amy said this new rigorous therapy will start on Friday (7/25).

The LDS hospital representative also said that by looking at how fast Todd is progressing, they believe he will stay at the new hospital for between 5 and 14 days. After that, there will be some home care. Overall, they are totally amazed at how fast he is recovering.

Todd is now able to wear normal clothes, like underwear (thank goodness; no more flashing), loose-fitting t-shirts and pants.

He had a long walk today. He looked out the windows and really enjoyed that. He tried walking on his own, but he still has a balance problem. The doctors say it is common with this type of injury.

During his walk, Todd passed by a Coke machine. He leaned over to Amy and said in a soft voice, "Hey Amy, quick, distract them while I grab a coke." Amy said, "I'm not going to do that you crack smoker." Todd said, "Okay, I'll distract them and you grab the Coke." When the doctors heard about this later, they said it was okay for him to have a Coke. When he got it and had a drink he said, "Oh, that tastes so good." Now lest you think Todd is craving Cokes and want to bring him some, keep in mind that he didn't even finish half the can. I think for the most part it was good just to have a taste of normal life.

I'll make a plug for visitors here (those than are in the area). I'm not saying we should flood Todd with visits, but I am saying that when he is in physical thereapy at IMC, he would love to visit with you. There are a few that come pretty regularly, this isn't for them. They'll go regardless. This is for those who may be waiting for the right time. I think you'll have a good visit and it will help Todd feel connected to his world again. Stick to the new visiting hours and don't all come at once, but do drop by.

Have Dinner With Todd

One of the main goals of this blog is not just to report events and milestones, but also to give you images and video so you can feel like you are able to be here. I know how much better I feel once I couple knowledge about what is happening with a visual confirmation. Many of you aren't able to have that opportunity. So let me help.

Below is a video of Todd during our visit today (Day 7). We showed up at dinner time, so you, if you choose to watch, will get to have dinner with Todd. I hope you enjoy it. We surely did.

video
When Todd was eating his beets, he said something I think is pretty funny. He told Amy that he "...Bites 'em like he loves it." We made that the catch-phrase of the evening, "Bite 'em like you love it." It may not even seem funny to you, but at that moment we were roaring.

All the humor may seem like Todd, but he said something interesting today that echoed the way we all felt after our grandpa passed away a few weeks ago. "We try to stay comedic because if we don't, we'll lose it." So don't mind the crazy things he says or his very "Todd" brand of humor. For both him and us it is a way to deal with a real world that seems unreal.

Monday, July 21, 2008

Day 7

Alicia and I ended up going to see Todd today. Wow, what an amazing visit! It was essentially Todd, the Todd we all know and love, sitting and joking in a hospital bed. I say essentially because he is still under the influence. So there were elements of "drunk" Todd. I will show you what I mean in a later video post.

Todd was taken off the food IV today. Now he is only on Nurontin (sp?) for the phantom neurological pain and another medication for his high blood pressure. While we were there they took him off the Heprin (blood thinner). They will put him on a new blood thinner that is less powerful and easier to monitor soon.

An international stroke specialist saw Todd this morning and said he is amazed at Todd's progress. Because Todd is doing so well, they were going to move him to the physical therapy section of the hospital. However, now that he no longer needs the special attention of stroke doctors at the University Hospital, the insurance company wants Todd to be in a network hospital. So tomorrow they will transfer him to either LDS Hospital or the new IMC (Intermountain Medical Center) and put him in their physical therapy unit.

During our stay, Haily (Amy's sister) came for a visit. Todd thought Oliver was with her, so he asked Amy, "Where is the one that doesn't work at all." We all thought that was pretty funny. There were many instances like that, where Todd couldn't remember a name, word, or phrase. But this isn't uncommon, even for me. Quite often I forget names of things as common as a broom and I describe them in a similar way, "The thing that you use to clean the floor." With the pain medication this is probably even more pronounced.

As we talked today I wanted to probe Todd's mental condition in regard to technical knowledge. He actually has a good grasp of the concepts, engaging in discussions that show his understanding. The only limitation seems to be his ability to grab the right words. Throughout our conversation he was talking about things that possessed all the right elements, but had some mixed-up words interspersed. The important thing is that as he is getting more lucid, he is getting more accurate.

Since this was the first time I have seen Todd remembering things so clearly, I asked him if he remembered what happened on the day he had the stroke. He said that he remembered having the attack, when he vomited and was loaded into the ambulance. He also said he remembered not being able to talk and writing on Amy's hand to communicate that he felt like his heart was beating double.

He also told me that while he was being loaded into the ambulance and during his time in the ER, he felt like he was going to turn into a demon dog and tear people apart. He said, it just goes to show how video games can mess with your head. This is a personal reference to the Silent Hill video games Todd and I played where often you have to go into a hospital that turns into an evil hospital and bad things happen.

Right before we left, Todd made me promise to "Tell grandma it's not her time to go. I've seen her. Tell her it's not her time to go. I've seen her." I should note that at this point, he was pretty tired from dinner and our joking around. So his words had more of a tired, dream-like feel to them. But I wanted to note them here anyway.

At the end of our visit I could tell we had overstayed our welcome. Todd was getting agitated. He started to proclaim that he was so tired of not being able to leave the hospital and just be a part of the normal life he had lived; playing video games, hanging out with family, and being able to express himself clearly. It was very hard not to be overwhelmed by that expression because it was so easy to understand and feel in an empathic way.

But I still view all of this, including the exasperation, as a good thing. Todd has made amazing strides over the last 24 hours. I was able to look into his eyes and talk with him. He was moving around, eating, joking, and showing signs of happiness. I am not sure of the religious background of all who read this blog, but I believe that the continual prayers and special fasts have not gone unheard. For your part in that, we are all grateful. Don't forget Todd in the weeks and months to come. This will be a long journey and he and his family will need all of you at some point or another. Don't ignore that feeling when it comes.