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why do i always write to soon



dan had a good nite... so i left and took my sis back to fargo to the airport, did a few errands in the big town... whie at the air port dans surgeon called and said dan has a compression hernia ( very visable on the outside) much less the inside now that it is marked.....and maybe this is his issue -- he i still running slight fever.... and tired...... so i am excited hooray the monster has a face !!! get back from fargo - he had been sleeping all day... woke him, cleaned him up. and then the spasams started again.... and the surgeon came back and said the latest ct scan showed the hernia had resolved , although a repair is still the plan... but he writhed in pain, valium, nothing, tordahl , nothing, morphine. ok he fell asleep in that position where you know he is still hurting.... dont dare breath around him even...gos last night his mood was so good.... and i thought , well if you have followed me you know i though oh the hump is over---- not.... here we go again......... doc is gonna do a little research about using elavil ( amitrptyline) in case it is phantom pain.... see how it mixes with the other meds on board...i give up i have no idea..... i now have a husband who is bedridden , and in pain ( and i mean gut wrenching to watch pain ) .... and i am spent i was so psyched -- thinking the worst was over, but its not.... how long can he live like this??????????


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Nancy: I want you to listen to me - tired as you are. His labs are good, he is producing urine. His scans have been unremarkable. Pain meds are not working. Something is going on here. Maybe it is time to transfer him, maybe not. But you, personally, are not going to solve this and you have confidence and trust in his medical staff at this hospital.


I am so sorry your sister had to leave so early. Would have been nice to have her spell you off and just catch up at night. But trust me, I know, any time is good time.


I think this may be multilayered issue and it will take several consults to figure out a game plan. In the meantime, keep in mind his neuropathy. Let Dan dictate the touching, movement. If he is comfortable and resting, leave him alone. And check for the next round of pain meds 20 minutes before you want to move him.


Then go home and rest. You can't make any decisions psych'd out. Debbie

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we'll i forgot something as debbie says multi layered..... dans antibioic zoystil ( i think ) no longer is woking for the sepsis... so they hve changed to levaquil now... this is the third drug.. all 3 in the lab said the bug was sensitive to them... but apparently the bug is mutating or whatever.. the docs used another word , but essentially that is my interpitation.. i hope this isent gonna be a "super bug " situation... the truly sad part dan always took any med till it was gone... he would do whatever the instructions were.. he was a excellent patient ( pre stroke) ... so as we know these super bugs are caused by the overuse of antibiotics , by basically everyone.... docs, farmers treating their animals, or preventing by feeding antibiotics , people not completing their med regimens ect.. and while i never felt immune to the effects of this it might be coming front and center into our lives... hope not.... his labs are still good, his kidney function perfect ( hooray) , as the doc says clinically dan is doing good... ( except for the antibiotics not getting the bug all the way yet) his cough is still there but is productive and they say his lungs are clear , bowel sounds good... but depending on where this goes i will start thinking about questioning ..mabey a trip to mayo clinic -- there approach would be team style and i do feel that would be of value but a transfer to fargo - no- i feel the docs there are about the same caliber as here... and the appeal to Mayo would be the Team approach.. so that would be about the only place of interest... i do have confidence in the people here, but as the surgeon says in his chinese dialect " Nancy - remember I am not a neurologist" , but in all honesty its not like nuerologists can fix him... at this juncture... but a neurological inset as part of a team approach would appeal to me... dan is simply a very complicated case.. ( so nice to be special) but not like this.... if i could just take away his pain-- trade places with him... i just wish he could be spared something... and maybe he is being spared - i dont know-- but man it sure doesent seem like it.... I sleep better here at the hospital, because i know then he really is ok... and they have great accomadations so it really isent a problem and at this point even if i leave in body, in mind i am still here... Poor beth i forgot to make sure she had a car to meet the bus so she missed school all day today ( since i was in fargo)... but just as well , as i have talked about before with her, hives are back in full force again.. why? stress in the family ( dad).. again beth is allergic to her life, we try to blame the dogs, the cats, the soap, the -- whatever .. but all have been ruled out... and the allergist said stress is a factor for sure... .... well Dear Diary, aka stroke net blog... here was my day, my life-- but more importantly dans life and his trials and tribulations, because as hard as this is to watch and verbalize ... imagine the pain this man is in... i mean this man is crying and writhing at times in pain... not 24/7 but most of his wake time is spent in pain...

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dan is back to retaining fluid-- not that he had yet gotten rid of it as it was,, but he phlebotomist who has drawn dan for 2 yrs even at the nursing home ( she is that good) noticed that he is definatley retaining .... he slept painlessly through the night.. but did not once turn on his side .. he responds if i wake him.. he is still "here" but i am really fearing the end may be approaching... and last night i spoke of mayo... but right now i think of the 5 hour ambulance ride, the etteling in for him.. the day or two wait for the team to assemble a- the day or two wait for their consenses and i think --- i dont know that it is in his best intrest and again fargo, no appeal -- doubtful any answers .. but i will inquire... and then there becomes the whole property issue --- ( please dont think i am depersonalizing my husband ) but by property i mean.. once he leaves this hospital , then he is fargo the land of chaos and - i have been down this road-----!!!! getting him transfered back here may not be very easy.... so i sit frozen , wondering is this the end, and if so why, why now... the price we have paid-- he has paid is so high... and this is it ???Am i premature in my thoughts perhaps , but i am getting this sinking feeling...

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Just keep writing it down Nancy, so we can all live this nightmare along with you and maybe come up with an idea or two. No warning, boom, so scary. I can't even imagine how you are getting through all this, but blogging is your best bet.

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Anyone can answer this, as Nancy may be too busy with what's going on... what is fargo?


Nancy, we are with you, right there with you, praying for you and Dan.

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You were right too. In this case Nancy was referring to the hospital in Fargo, a good hospital but not necessarily better than where Dan is now.

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Nancy, I am thinking of you and your family and praying for you. I just wish Dan's pain would go away. I can just imagine the frustration you're feeling not even knowing what is wrong. I'm worried about you getting worn out. I do understand though why you want to stay there, I would probably do the same. Wish I could do more. Joni

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