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new - sorta interesting stuff...



well as i blogged in the past , dans carotid artery is open now... i really lean towards this being a new development-- with the super high INR... anyhow... we have seen 2 seizures since then , one grand map ( probably his body responding to the onset of the UTI)-- of course hind site.. and again last night, last nights i described to you all -- hind site it was a seizure.. way different than any i have ever seen before... today we got him washed up really good i was gonna showere him but the PT was more important than zapping his energy on a shower... and i can give a pretty good bed bath.. so i got him cleaned up and hair shampooed... yes the water got everywhere but it was all bedding that was gonna be stripped and i had set up to wick it from getting to be a real problem... my daughter erika and a nursing student helped.... anyhow..... here is the good stuff... dans PT said dan has practically zero tone in his affected leg ( and there is much less in his affected hand as well) ... now he was highly toned but he had learned to use the tone to walk ... now he cant walk as his tone is gone... he can stand, and side step but cant even walk one step forward with his affected leg..this sounds awful... BUT there is a BUT---- this might not be a bad deal, we know something has happened in his brain and the loss of tone might be why the seizure was so much less, and the fact he cant walk... he will need to relearn to walk.. with out tone ( unless it comes back and it might, but NO ONE KNOWS) ... oddly dan seems pretty clear of mind when he focusing on taks... and seems to be having an extention of sentences.. like a two part sentence.. example: oh brother , get out of here.. those are two thoughts and not a( "catch phrase to fill in the gap) so i am gonna have speech lady see him to.. the PT said he has never seen some one lose their tone, with out some sort of "brain issue not being involved example.. new stroke or seizure activity or perhaps new blood supply to brain that wasent getting much ??? so we dont know !! good or bad we dont know... of course the other part is dan could be so weak from the sepsis that the tone is gone temporarily from that... but tests the PT did were different results than before our last couple weeks of drama.. his therapist said before he had to use full body weight just to do a toe to shin stretch ... today he could do it with one smooth motion....so we dont know.. but i promised to blog it, for you for me and for pure survival... and i might be crazy -- ( i dont think i am) .... but i feel this stuff is different , i dont know .. maybe not maybe i am looking for something that isent there ( the elusive unicorn) .... but hey its a thought...and i am not crying today, i might tomorrow but not right now.... but i always blog to soon...we will see..


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Nancy, valium is a muscle relaxer,and I was thinking they had him on another one also. That's probably why the tone is gone. When he goes off it, the tone will come back, probably. I'm glad to hear he is up to doing some things!

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Tordahl which as it has been explained to me is a liquid ibuprofen... and the valium we havent used since yesterday morning... but sandy you could be right at this juncture anything is possible.... whatever this is I'll take it.. seems like it is a OK thing more or less and we dont really have a choice ( none of us do )

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Maybe that was my problem when I came home from the hospital after 5 months unable to walk. I had to take more outpatient therapy to learn how to walk again. After a few months I was walking again and got out that wheelchair for good. I even went and got my drivers license and all that has been 9 years ago now.


So any other stroke survivor can do the same thing I think. I think Dan can do it too but not sure about the seizure attacks that follow him at times!

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Nancy: funny, like minds! I am thinking exactly like you. Bruce deals also with overtoning - hence the Baclofen and the Botox and still that leg-foot is almost impossible for him to extend to step on the floor. Now, in Bruce's case, it is also lack of exercise.


So, with stroke, overtoning usually kicks in about 9 months to a year. But, like you, no one ever explained why (why we check with our Neuros and I will talk to Bruce's, maybe we both can get some insight). Hopefully someone here knows the answer. Like you, since Bruce has it and we just had to deal with it, never considered why or what caused it. And really since Carotid return is so very rare, chances are very few have even dealt with it.


As stroke victims, yes, I agree, way too early to hang any decision on all this. But we still have hope! Can you imagine if the toning is truly gone and it is now a matter of getting his muscles back in line and talking to the brain? A therapist's dream, so you will have great support on that level.


Wow, I was taking tonight off - LOL. But thank you for sharing. Giving me so much to think about! There may also have to be a change in his seizure meds-replumbing in the brain.


What most thrills me is the improvement in his cognitive status, after so long. Again, blood supply. Get Dan through this infection - and I know the bath-shampoo was as much responsible for his improvement as anything else. Then get all the pros back on line - Speech, OT and his PT. And honey, I know you are totally exhausted and spent, but if Dan is responding to his tasks - his work for the day - you go with it. I was glad to hear the Hospital provided comfortable accommodations for you. That certainly helps. But do take your walks and time outs when Dan is occupied.


Keep us informed as best you can! Debbie

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and of course today has been a downer, but so much of dan is the mood of the building... sunshine, --- there is none we have pea soup for fog out there.. so it is a blah day.... and dan is down in surgery all must be good as i havent heard a thing and that was sorta the plan... return him when you are done... he is back to running the fever with no true explanation.. not the crazy high but the 100 point something kind... and he was NPO and refused a suppository of ACE and doc said this fix of the hernia , the fever wasent a big issue but potential for incarceration of the hernia is....AND where i wrote the ... the surgeon entered and told me the surgery went fine and the hernia which keeps popping in and out was out again, ( and it is possible this is the root of the low grade temp) so he did the surgery and it went well and he is happy we did it ( he had a gut feeling) ... as ethyl can tell you doing surgery on a septic person not always smart and some of his fellow staff were not comfortable with it being done.. but i am so glad we did from the sounds of it.. and as long as it was a repair - OK .. not a introduction of a forgein body.... hopefully the port can get put in later and then the hyderation issue will be addressed.... so today is a HUMMMM type of day ... lets see what come out in the wash...

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surgery went OK --- who would have guessed -- ?? he did have some septic reactions but he was headed that way anyhow today - high fever 103 and shivering, but Ace brought it down .... and he is far more comfortable now.... i learned a new thing today a small hernia - size of a pinky nail or thumb nail is a LOT more dangerous than a big one... I would never have guessed that.. but it makes sense after the doc explained what... and it was a less than 2 week old hernia ( very new) ... I have had to play doctor so long it is hard allowing another to watch out for dan -- even a concerned surgeon with a heart of gold... i was apprehensive , but had to remind myself the man has only wanted what has been best for dan from the get go and has literally saved his life, and he just had a feeling he was gonna find exactley what he found a compression hernia just sitting there ready to start "incarcerated" in which case it would have been a really bad deal....that would have meant the organ underneath would have had its blood supply cut off causing tissue death to the organ in this case the colon is what would have been at stake... but i second guess everyone and i am sure i will for the rest of my life.. negligence got us to this stroke... so relaxing and remembering in general people do only want whats best has been hard... but i scrutanize everyone , ask lots of questions , play out lots of senerios with the docs ... but i am not a doctor... but i am a specialist of Dan, my man.... I think we are on the mend thanks to me trusting, closing my eyes and trusting.... that their are people in this world who do care enough to give it their all ... maybe this terrible past couple weeks has been to teach us to trust again... i dont know, but, hopefully i get to keep this "feeling for a while "... well i havent truly relaxed and cleaned up showered - bath - i think i am gonna take one... but first i gotta get dan washed up and settled than i can go home for a bit and maybe take a BATH not a shower but a BATH .... and relax...

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Not a downer, honey, just a get the business done kind of day. You know, when you come off a couple of productive days that also allowed some down (fun) time and then have to get back to daily chores. Surgery had to be done. You were the one sitting with him during that horrid abdominal pain. They'll do an antibiotic flush and get him right back on his IVs and hydration. He'll have some down time for a few days, honey, you already know that, so make some plans with family for Easter. You don't want to miss that with Wesley. Even if it is only a brunch. But do plan to get away for a bit.


Thank you for taking the time to update us. Debbie

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Nancy, I had some time with my grandkids today and it is worth it so do have time with Wesley if you can. It takes you to a different place when you see the world through their eyes.


Yes, let the people who are paid to take care take care of Dan for a while.


(((hugs))) from Sue.

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You do need a break. I do hope that you take advantage of the care that Dan has. I know that it is hard . But for you sanity and health. Please take some time off. take a breather. I am glad to hear that Dan is doing better.




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