How could I forget? Yesterday T was given the ok to start diluted liquids- 500cc daily- means he sips 200cc of Ensure Clear with equal amount of water at a time - he savors the taste and sips very slowly.
Road to health is littered with lots of fumbles... but he's still climbing the path...
About Me
- AnneMarie
- Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.
Saturday, July 26, 2014
Today is Saturday, July 26th
Life keeps rolling along. I'm debating whether I can make 6.3 mi. & do the Wharf to Wharf tomorrow. Haven't been walking even close to that since I moved to PA. Sometimes I feel like I've moved to outer space. I miss having a regular routine, and seeing folks. Everything feels out of order. I think I've become a control freak because I can't control anything. I'd like something to settle out. I'd like Tracy to come home.
Bought a parking pass yesterday... make it easier to break up the day - in & out privileges and don't have to constantly search for cash... 4-5 hours at a time in the hospital is hard... altho' yesterday T & I walked twice; in addition his aide walked him before I got there. I'm reading Jim's copy of Michael Connelly's "The Reversal" to T. I read it already and knew T would love it.
T just called new room #FGround 077A - 650.498.3037 - we're casting the characters for the movie - T said the bad guy, Jason Jessup, should be played by Robert Duvall... T's imagination is engaged... ha! poor guy has been bored stiff... he watched the Giants lose to the Dodgers last night...
OK... short but sweet... I'm looking forward...
Tuesday, July 22, 2014
Today is Tuesday, July 22nd
Wow!! Bought some sushi, Zero Vanilla Coke & Meyer's rum along with Clorox wipes on my way home from spending the day with T. When did Ca. get so muggy? I sought refreshment and now at 12:15 realize there was caffeine in that Coke... only had 1 rum & coke guess it was the 2 cans of coke... as T says when he sips his cranberry juice "soo refreshing!"
So let's back up to last Thurs. morning... T was set for at least 2 weeks... checked Facebook & the twins were gonna meet at the pool down in Paso... phoned Deb & Gar... leaving in a couple hours... I'd forgotten all about the Paso weekend but the ? was could I do it? Alan said he'd take Riley, T said "GO", cancelled my eye doctor apt., threw stuff in a bag, grabbed Riley's food, flinger, dishes & treats and rode over the hill. I'd forgotten Riley's bed so, went to get a bed for the boy and we were off....
Just what the doctor ordered!!! ESCAPE!!! I missed my T but I took a few days to just relax, be entertained... dip in the pool and salsa dance to Desayuno... saw Elvin Bishop, the Fab Four, horse cutting, sheep busting, dog show... Jeff hosted a Magic bus ride for wine tasting at the Rockin' R and we all had a blast!!! Carla, Jayne, Lou, Deb, Gar, Di, Mike, Terri and Mark... the usual Paso suspects...
Kept checking in with T and he was in pain on Sat... coaxed him into talking to the Docs and they figured it out.... change in meds...
I'm baaack.... washed everything in sight including Riley... tomorrow the car...
T is in total isolation... he's very lonely... had to gown up, gloves, mask... our guy has C-Diff & not sure about GVH too... hopefully, I'll see a doc tomorrow... T's very calm... I'm wired for sound... he's got his advocate back and we hugged long & hard... I bathed him and got him to walk around the wards... he was glad that his PT saw him moving....he massaged my aching neck as we waited for his room to be cleaned... which I insisted on even tho' the housekeeper said she'd already cleaned it... yah I'm not loopy...
So let's back up to last Thurs. morning... T was set for at least 2 weeks... checked Facebook & the twins were gonna meet at the pool down in Paso... phoned Deb & Gar... leaving in a couple hours... I'd forgotten all about the Paso weekend but the ? was could I do it? Alan said he'd take Riley, T said "GO", cancelled my eye doctor apt., threw stuff in a bag, grabbed Riley's food, flinger, dishes & treats and rode over the hill. I'd forgotten Riley's bed so, went to get a bed for the boy and we were off....
Just what the doctor ordered!!! ESCAPE!!! I missed my T but I took a few days to just relax, be entertained... dip in the pool and salsa dance to Desayuno... saw Elvin Bishop, the Fab Four, horse cutting, sheep busting, dog show... Jeff hosted a Magic bus ride for wine tasting at the Rockin' R and we all had a blast!!! Carla, Jayne, Lou, Deb, Gar, Di, Mike, Terri and Mark... the usual Paso suspects...
Kept checking in with T and he was in pain on Sat... coaxed him into talking to the Docs and they figured it out.... change in meds...
I'm baaack.... washed everything in sight including Riley... tomorrow the car...
T is in total isolation... he's very lonely... had to gown up, gloves, mask... our guy has C-Diff & not sure about GVH too... hopefully, I'll see a doc tomorrow... T's very calm... I'm wired for sound... he's got his advocate back and we hugged long & hard... I bathed him and got him to walk around the wards... he was glad that his PT saw him moving....he massaged my aching neck as we waited for his room to be cleaned... which I insisted on even tho' the housekeeper said she'd already cleaned it... yah I'm not loopy...
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| Carla cover girl |
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| Elvin Bishop |
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| Juicy Jayne |
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| She stole Riley |
Wednesday, July 16, 2014
Today is Wednesday, July 16th
What a difference a day makes... neither of us are sleeping cause T is having stomach etc. problems.
Today we finally got the colonoscopy and endoscopy biopsy results: Graft vs. Host infection throughout his intestine, duodenum and colon... poor guy finally knows why his stomach is so distended and he can't seem to eat anything without resultant issues. So the cure? Leave his intestines alone long enough to heal... Tracy and I were in the ITA from 10:30 until I left at 4:30 awaiting his admittance to E1 again. Just spoke to him and he's still waiting for a room but they're feeding him intravenously and he's pretty calm.
I kept wondering what we could do to relieve his discomfort. He was feeling so blessed that he invited R & his caregiver over for dinner Fri. night. They were right next to us in the ITA and they heard the conversation with the doctors as they said he needed to be admitted... as I cried, R came over and bumped fists with T and kissed me... told us not to worry... just a little speed bump in the grand scheme of things.... T needs the rest, constant monitoring and IV feeding... I need a good night's sleep.
Riley is right beside me as I write and he's happy that I took him for a walk before I started the laundry... and fed him lots of treats... at least T is close...
Today we finally got the colonoscopy and endoscopy biopsy results: Graft vs. Host infection throughout his intestine, duodenum and colon... poor guy finally knows why his stomach is so distended and he can't seem to eat anything without resultant issues. So the cure? Leave his intestines alone long enough to heal... Tracy and I were in the ITA from 10:30 until I left at 4:30 awaiting his admittance to E1 again. Just spoke to him and he's still waiting for a room but they're feeding him intravenously and he's pretty calm.
I kept wondering what we could do to relieve his discomfort. He was feeling so blessed that he invited R & his caregiver over for dinner Fri. night. They were right next to us in the ITA and they heard the conversation with the doctors as they said he needed to be admitted... as I cried, R came over and bumped fists with T and kissed me... told us not to worry... just a little speed bump in the grand scheme of things.... T needs the rest, constant monitoring and IV feeding... I need a good night's sleep.
Riley is right beside me as I write and he's happy that I took him for a walk before I started the laundry... and fed him lots of treats... at least T is close...
Tuesday, July 15, 2014
Today is Tuesday, July 15th
Life is all consuming at times... like right now.
I thank God we've turned a corner and T keeps creeping back to health...
T met another transplant patient today and his story blew our minds. R is on his 2nd transplant cause the first did nothing. He had to wait a long time for the 2nd donation and it is a 9-10 match from Germany. His caregiver came in from Kansas and he's from Sacramento. He's doing his best and it was a wake up call for us. Not everybody has a perfect match. Not everyone reaps life....
The last week has been Hell for us... T had a very hard time prepping for his colonoscopy and endoscopy and then, he tried to recover. The issue was whether he had an infection due to rejection. The biopsy results are negative but T lost a little ground in the interim. T is down to 204 lbs and I'm bound and determined to fatten him up. His numbers were good today after a blood transfusion on Sat. and lots of TLC.
I thank you my friends and family for all your loving support.... we wouldn't be here without you......Exhaustion has become a constant but we're getting the better of it. We're determined.
And along the way, my business has picked up..... who said there's no rest for the weary?
I thank God we've turned a corner and T keeps creeping back to health...
T met another transplant patient today and his story blew our minds. R is on his 2nd transplant cause the first did nothing. He had to wait a long time for the 2nd donation and it is a 9-10 match from Germany. His caregiver came in from Kansas and he's from Sacramento. He's doing his best and it was a wake up call for us. Not everybody has a perfect match. Not everyone reaps life....
The last week has been Hell for us... T had a very hard time prepping for his colonoscopy and endoscopy and then, he tried to recover. The issue was whether he had an infection due to rejection. The biopsy results are negative but T lost a little ground in the interim. T is down to 204 lbs and I'm bound and determined to fatten him up. His numbers were good today after a blood transfusion on Sat. and lots of TLC.
I thank you my friends and family for all your loving support.... we wouldn't be here without you......Exhaustion has become a constant but we're getting the better of it. We're determined.
And along the way, my business has picked up..... who said there's no rest for the weary?
Wednesday, July 9, 2014
Today is Wednesday, July 9th
We've had quite a few very long days... T's come alive with the addition of prednisone... he's eating again... and he's awake and aware and it's amazing what a steroid will do... unfortunately, it's not a miracle drug and T can't stay on it forever... no one can. The docs are playing with all his meds to regulate the immunosuppressant with the antifungals and antivirals and liver protectors and on and on... it's a day to day thing and we're on a Mon - Wed - Fri thing with an additional day this Sat. cause T is having a colonoscopy and endoscopy on Fri to figure out what's going on with his stomach etc.... Our T is back but he's losing weight and we're not liking that...
So I ended up at PAMF Urgent Care on Sun. Kept thinking my eye would heal but it just kept getting worse... turns out it was a sty on the inside of the corner of my eye... and it just kept growing and irritating my eye socket etc.... antibiotic shot in the ass and a course of heavy duty antibiotics and my eye is looking much better. The Doc wanted to know why I hadn't been to a Dr. since last Oct. Silly ?
Don't ya think?
Anyway, today after a terribly long day yesterday... showed Maciel listing and showed several condos and checked out several homes for clients... back to grocery shopping, CVS for meds and then, making dinner and washing clothes and bathing and then, collapsing... I was quite under the weather...
I took it easy this afternoon after ITA and T made dinner tonite... wow!! then, we watched the Giants finally beat the A's... Yahoo!
Tomorrow is a new day!!!
So I ended up at PAMF Urgent Care on Sun. Kept thinking my eye would heal but it just kept getting worse... turns out it was a sty on the inside of the corner of my eye... and it just kept growing and irritating my eye socket etc.... antibiotic shot in the ass and a course of heavy duty antibiotics and my eye is looking much better. The Doc wanted to know why I hadn't been to a Dr. since last Oct. Silly ?
Don't ya think?
Anyway, today after a terribly long day yesterday... showed Maciel listing and showed several condos and checked out several homes for clients... back to grocery shopping, CVS for meds and then, making dinner and washing clothes and bathing and then, collapsing... I was quite under the weather...
I took it easy this afternoon after ITA and T made dinner tonite... wow!! then, we watched the Giants finally beat the A's... Yahoo!
Tomorrow is a new day!!!
Friday, July 4, 2014
Today is the 4th of July
Wow! What a week!!! Sorry it's been hard to keep up...
We're on a Mon, Wed, Fri schedule in the ITA and it's been a very long week...
As of today, it's been pretty routine. But then, my guilt over leaving T on Tues. for 3 hours and Thurs. for 6.5 made me crazy... somebody's gotta make the donuts and T really wants his independence.. poor guy hasn't had any alone time in months. But today my guilt kicked in. Yes, I called way too many times yesterday and T was probably sleeping but I needed to hear his low throaty "Hi my love" to assuage my fears... He wants the alone time,,, he probably craves the alone time... he's the guy who would rather stay home than anything else... so, if you're asking why I didn't ask for help that's why...
I spent Tues. and Thurs. working...showing my listing on Maciel and checking in with a seller on Tues. and taking a client out to look at possibilities on Thurs. plus broker's tour checking out possibilities for clients ...plus all those in between tasks - bank etc... and I awoke today with a sore right eye socket... what? I look like T took a swing at me... no telling where this came from but it will go away soon.... I'm willing it...
Today, after a very long day, where we discovered that T has a graft vs host rash --- newly developed and the disclosure that T is finally copping to no appetite and screwed up bowels... ahhh... I breathe a deep breath... finally, new meds and I can relax. I'm not the only sentry and after showering, stripping and changing the bed and washing everything... I'm a new person...
T has some new meds and I feel relieved... I've been making his favorites but his guts have been saying no way... hopefully, with the prednisone etc. he'll come around to eating again. 210lbs. for our T is way too skinny and my Italian says NO!!!
Happy 4th of July to you all!!!
We're on a Mon, Wed, Fri schedule in the ITA and it's been a very long week...
As of today, it's been pretty routine. But then, my guilt over leaving T on Tues. for 3 hours and Thurs. for 6.5 made me crazy... somebody's gotta make the donuts and T really wants his independence.. poor guy hasn't had any alone time in months. But today my guilt kicked in. Yes, I called way too many times yesterday and T was probably sleeping but I needed to hear his low throaty "Hi my love" to assuage my fears... He wants the alone time,,, he probably craves the alone time... he's the guy who would rather stay home than anything else... so, if you're asking why I didn't ask for help that's why...
I spent Tues. and Thurs. working...showing my listing on Maciel and checking in with a seller on Tues. and taking a client out to look at possibilities on Thurs. plus broker's tour checking out possibilities for clients ...plus all those in between tasks - bank etc... and I awoke today with a sore right eye socket... what? I look like T took a swing at me... no telling where this came from but it will go away soon.... I'm willing it...
Today, after a very long day, where we discovered that T has a graft vs host rash --- newly developed and the disclosure that T is finally copping to no appetite and screwed up bowels... ahhh... I breathe a deep breath... finally, new meds and I can relax. I'm not the only sentry and after showering, stripping and changing the bed and washing everything... I'm a new person...
T has some new meds and I feel relieved... I've been making his favorites but his guts have been saying no way... hopefully, with the prednisone etc. he'll come around to eating again. 210lbs. for our T is way too skinny and my Italian says NO!!!
Happy 4th of July to you all!!!
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