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Author Topic: nerves and frustration! EE's update  (Read 17201 times)
willieandwinnie
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« Reply #25 on: September 25, 2008, 05:12:20 AM »
:grouphug; I'm sitting here crying looking at Eathen in the horrible cast. That has got to be hard when he doesn't understand why and probably can't explain the pain he is experiencing. I'll pray the 12 weeks goes flying by for him and you. Please keep us updated.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
twirl
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« Reply #26 on: September 25, 2008, 05:45:28 AM »
so stepmom and dad pm me your address ( I do not want to call you evil)
I was thinking EE will be in the cast Halloween and Thanksgiving and close to Christmas
I'd like to send him a little stuffed toy or something
and I will send your daughter  something too
need to include both children---- I was the heart surgery patient when small and got things and my twin never
and don't worry this makes me happier than you
I want to do something
can't stop looking at EE and he is crying
breaks my heart
love to you --- stepmom, daddy, EE, and big sister :waving;
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monrein
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Might as well smile
« Reply #27 on: September 25, 2008, 05:54:13 AM »
Beautiful post Twirl.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Laurie
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May 13, 2008
« Reply #28 on: September 25, 2008, 10:33:15 AM »
I can't imagine how hard this is for all of you. Your family wil be in my prayers.
I live close to Dallas, so if there is anything you need, let me know.  :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
annabanana
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« Reply #29 on: September 25, 2008, 10:45:12 AM »
So sad...

Make sure he has everything he loves around him.
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HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
evilstepmother
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« Reply #30 on: September 25, 2008, 12:32:09 PM »
yes- he will be in a cast through Halloween (I'm thinking he should be a mummy- whatcha think??? lol) (have to laugh to keep from crying) and thanksgiving and Sophi's 2nd birthday, he will be off at the soonest on dec 17th- so hopefully he will be out of it for Christmas... he loves music and Elmo and "fraggie rock" (known to others as fraggle rock- an oldie but a goodie!) He has already been spoiled with TWO new battery operated guitars (little tykes and something similar) one from his home health nurse and one from some church members.

His feet were very very swollen this morning and they ended up having to cut slits in the legs of the cast to help the swelling go down. Things seem to be better now... I'm not happy to be here at work...  :banghead; but I'm sure ee is glad I'm not there- I kept lotioning his feet last night, and it was good w/ the left one but very evil eyes when I would do his right foot. His daddy keeps calling the cast his robot legs- and when I made another trip to the store last night (seems like we always need something) but found some transformer house shoes and thought those were just too perfect w/ his daddy calling the cast robot legs!!!!
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mirror mirror on the wall, who's the craziest of them all, ME!!!!!!!! mau hahahaha
willieandwinnie
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« Reply #31 on: September 25, 2008, 12:59:06 PM »
I'll continue to keep all of you in my thoughts and prayers.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
evilstepmother
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« Reply #32 on: September 27, 2008, 04:54:58 AM »
Update: :guitar:

Eathen is moving and grooving- I came up last night and sent dad home so that he didn't have to go 5 full nights on this WONDERFUL fold out chair  :sarcasm; in the mean time I wasable to sleep a few hours before he decided he was bored and unhooked his "speed bump" (feed pump) from his gbutton. We are now on a new rotation of nurses and I'm being harassed about then not getting any cookies- so I guess I get to do that when I get home- we have been dealing with a whole lot of swelling! It's been miserable and and mainly in his right foot but I'm starting to notice it more in his face also. (The charge nurse seems to hate me for some reason... but again besides the point) Wednesday night they were talking about cutting the cast even more that the swelling had gotten so horrible. EE was repositioned and then we started pd for the night- let me tell you, Dad just about lost it when his first drain pulled off 486 (his day dwell is only 250) Then he continued to pull off over night a total uf of 618- altogether pulling off over 1000 more than normal (should be) at this point however he was still on iv only and hello! So they ended up not putting a day fill in on Thursday or Friday and that has seemed to help alot. He still hasn't pooped and hasn't handled a full bolis yet. A Dr just came in and said that as soon as those two things happen and we feel commfortable about things we can go home... That the neph was thinking maybe Monday but he (the rounds Dr) thought sunday could happen if EE's up to it. well, her just got some more drugs and looks as though he might be sleepy- aww hopefully I get to go back to sleep.

More later- hope y'all are having a wonderful weekend!
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mirror mirror on the wall, who's the craziest of them all, ME!!!!!!!! mau hahahaha
pelagia
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« Reply #33 on: September 27, 2008, 02:05:29 PM »
I have been away for a couple of weeks and I am still catching up with the posts. 

I am greatly saddened to learn about Eathen's trials and the most recent development that required the cast.  I have very little experience with this sort of challenge in life, so I can offer no advice.  I hope that each of you can find the strength you need to make it through these difficult times, and that you have enough love and support from family and friends.

I am privileged to know an amazing family of special needs children who have thrived despite the odds.  ESM - if you can track down this movie you can learn more about the Tom family and the woman who binds them together.  Susan Tom is a loving, but no nonsense kind of person, who has helped her kids to far surpass expectations. 

http://en.wikipedia.org/wiki/My_Flesh_and_Blood_(film)
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
evilstepmother
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« Reply #34 on: September 29, 2008, 12:29:52 PM »
 :banghead;
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mirror mirror on the wall, who's the craziest of them all, ME!!!!!!!! mau hahahaha
twirl
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« Reply #35 on: September 29, 2008, 06:14:50 PM »
you have to bake cookies ???
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evilstepmother
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« Reply #36 on: September 29, 2008, 08:43:01 PM »
hahahaa, yes since last Tuesday I have made over 15 dozen cookies, 10 of which went to ee's daddy and the nurses. The first 5 dozen were from lack of sleep and nightmares about everything, and 2nd 5 dozen for the nurses was because of shift changes not getting any of the first set....

 :yahoo; :yahoo;  but eathen is home and doing good!!!! he got home about 6pm this evening   :2thumbsup; :2thumbsup;

more later...



EDITED: Fixed bold tag error - okarol/admin
« Last Edit: September 29, 2008, 11:21:18 PM by okarol » Logged
mirror mirror on the wall, who's the craziest of them all, ME!!!!!!!! mau hahahaha
okarol
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« Reply #37 on: September 29, 2008, 11:21:46 PM »
 :waving; Hey Eathen!
 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile
« Reply #38 on: September 30, 2008, 04:23:33 AM »
Glad he's home.   :waving;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
willieandwinnie
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« Reply #39 on: September 30, 2008, 06:12:02 AM »
 :yahoo; Glad Eathen is home. Keep us posted.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
pelagia
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« Reply #40 on: September 30, 2008, 10:46:44 AM »
 :bandance; :yahoo; :2thumbsup; :clap;  :cheer: :bandance; :yahoo; :2thumbsup; :clap; :cheer:
 :flower; :flower; :flower; :flower; :flower; :flower; :flower;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
annabanana
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« Reply #41 on: September 30, 2008, 10:48:56 AM »
can't beat pelagia's post. I'm very glad he's home! Things will be better now.
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
EEsDaddy
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« Reply #42 on: October 03, 2008, 03:34:53 PM »
EATHEN UPDATE!!!!!!!!!!!!!!!!!!
He has been in the cast for about a week and a half now. I for the first time was able to change a diaper without getting it on the cast YAY GO ME!!!!   :bandance; :bandance; I am still a little frustrated  that he is still requiring 16hours daily on 2.5% (the strongest they allow him to have.) He is pulling off almost 800uf (regular is around 300) and his I drain are 275-300 (regular are 100-150)  :rant; Sorry. just had to vent about stuff. Besides that he is adapting well and goes for first x rays on Tuesday at 10A.  I will let you know how that goes and please pray for us this weekend while we have Sophia and EE both with no nurse and tired parents.

Til Next time
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pelagia
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« Reply #43 on: October 03, 2008, 03:37:15 PM »
So happy to hear the positive news.  :flower;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
paris
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« Reply #44 on: October 03, 2008, 04:05:09 PM »
We'll be surrounding you this week end with good thoughts and lots of prayers for all four of you  :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
monrein
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Might as well smile
« Reply #45 on: October 03, 2008, 04:07:22 PM »
 :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
ODAT
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Nala - Mom's Cat
« Reply #46 on: October 03, 2008, 08:12:53 PM »
I know how good cyber hugs feel  :cuddle; so hard to see a child down. You all are in my prayers.
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As is your sort of mind, so is your sort of search: you will find what you desire.
G-Ma
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« Reply #47 on: October 03, 2008, 09:34:47 PM »
 :grouphug; and  :bunny: for the babies.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
okarol
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« Reply #48 on: October 04, 2008, 12:37:57 PM »
Quote from: EEsDaddy on October 03, 2008, 03:34:53 PM
EATHEN UPDATE!!!!!!!!!!!!!!!!!!
He has been in the cast for about a week and a half now. I for the first time was able to change a diaper without getting it on the cast YAY GO ME!!!!   :bandance; :bandance; I am still a little frustrated  that he is still requiring 16hours daily on 2.5% (the strongest they allow him to have.) He is pulling off almost 800uf (regular is around 300) and his I drain are 275-300 (regular are 100-150)  :rant; Sorry. just had to vent about stuff. Besides that he is adapting well and goes for first x rays on Tuesday at 10A.  I will let you know how that goes and please pray for us this weekend while we have Sophia and EE both with no nurse and tired parents.

Til Next time

Hey Daddy, any chance of a updated photo? Whenever I look at the one in the hospital I feel like crying.
Thanks and good luck this weekend!  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Lori1851
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This is me Lori , Dustin's mom
« Reply #49 on: October 08, 2008, 03:01:32 AM »
Lots of hugs to you, Ethan and your family!! Hang in their hon!
Lori/Indiana
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