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Author Topic: Baby Logan--PD update  (Read 5267 times)
Jessmomto3
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Logan's mom!

« on: April 18, 2009, 09:28:35 PM »

Hi all! 

Some of you might remember Logan from my introduction.  I haven't sent in an update though.  So, I wanted to now.  Logan is doing really well.  He's almost 14 months now and he's still on 12 hours of PD a night.  He was on 10 hours from his first month (Aug 2008) to Dec 2008 but since then he's had two hernias so we have to keep him on a 250 ml fill volume.

He is now 8.8 kg and needs to get to 10 though they have said at any point from now on if he were not tolerating dialysis, etc well that we could transplant.  His dr said at 9 kg they would feel comfortable with giving him a transplant but that they tend to do better once they've hit 10 kg so we will hold out as long as we can. 

We are in the process of looking for a live donor.  I can't give because I only have one myself.  And my husband is the wrong blood type.  We're hoping to find one before he hits 10 kg because we would prefer to have the cadaver kidneys go to people who have to wait longer on the list.  Logan will be top priority because he is a baby.  It almost doesn't seem fair to me because most of the time he doesn't feel so bad.  But, then there are times when he really does and babies do tend to have higher mortality rates.  When they get sick, they get REALLY sick.  Thank God he has always bounced back quickly.  We had a potassium scare in Dec when his potassium was over 7.  But, the Kaexalate brought it down and now that he's on Suplena it hasn't been a problem.

Anyway, I hope all is well for all of you guys!  Logan continues to be my inspiration.  He is such a happy little guy through all of this but then again he doesn't know any different so he doesn't really know that he feels bad, if that makes sense. 

And just because it's cute.

 :basket:
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Jessica--mommy to Cristian (8), Jaden (4), and our miracle boy Logan (2/23/08)

Logan had PD cath, g-tube, and mediport placement at 4 1/2 months-- 7/2008
started PD at 5 1/2 months--8/2008
Listed--12/2008--inactive
Activated--8/2009

Cadaveric Kidney Transplant 9/4/2009 (18 months old)!!!!!
Wattle
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« Reply #1 on: April 18, 2009, 09:42:09 PM »

 :cuddle;  Thanks for the update. I have often wondered how your little guy was doing. I am happy to read he is tolerating the dialysis well. He will be at 10kg before you know it.

Have you looked into incompatible blood group transplants? That might be worth a try or a paired donor program.

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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
G-Ma
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« Reply #2 on: April 18, 2009, 10:32:35 PM »

I'm glad he is doing well.  I pray he gets a kidney very soon.  I firmly beleive all children should be first on any list.

 :grouphug;
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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
MIbarra
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Stopping to smell the bluebonnets

« Reply #3 on: April 19, 2009, 02:06:46 AM »

I agree! They deserve to have as normal a life as possibe as soon as possible. I hope he gets a kidney very soon! I'll keep Logan in my prayers.
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Cadaver transplant April 29, 2007
BigSteve
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« Reply #4 on: April 20, 2009, 01:34:57 PM »

Thanks for the update. I wondered how the little one was doing. 12 hours on the cycler sounds
like a lot. How do you keep him from turning and kinking the line? I'm on the transplant list, but I
have no problem with a youngster getting a transplant first. He should have a long, happy life.
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"I yam what I yam what I yam." Popeye's immortal words.
"Getting and spending we lay waste our powers"
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paul.karen
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« Reply #5 on: April 20, 2009, 04:17:35 PM »

Im also fine with a child getting priority :thumbup;

But i have a question. Can a baby take a grown persons kidney?  Or does it have to be a child..
He is a cutie.  Im glad he is so happy, makes it a little easier for you im sure.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
paris
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« Reply #6 on: April 20, 2009, 04:32:47 PM »

Thank you for giving us an update on Logan.  He is an inspiration for all of us.  If he can do this, we can too.  I'll keep praying for a transplant soon.    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
george40
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« Reply #7 on: April 27, 2009, 12:12:03 PM »

Thanks for the update, little Logan is in my prayers.
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8/2000 - Diagnosed ESRD / Hemo begins with perm cath
1/2002 - Transplant No. 1
4/2006 - Transplant failed due to CMV virus/ Back to Hemo
11/2008 - Moved to PD Modality
9/2012 - Transplanted!
Jessmomto3
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Logan's mom!

« Reply #8 on: June 09, 2009, 12:37:34 AM »

Thanks for the update. I wondered how the little one was doing. 12 hours on the cycler sounds
like a lot. How do you keep him from turning and kinking the line? I'm on the transplant list, but I
have no problem with a youngster getting a transplant first. He should have a long, happy life.

12 hours is a long time for him.  some days it feels longer than others.  We don't keep him from turning and kinking the line.  He sleeps next to me and I just keep untangling him.  I don't dare let him sleep on his own because I'm afraid he could get it or his feeding line or both wrapped around his neck. 
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Jessica--mommy to Cristian (8), Jaden (4), and our miracle boy Logan (2/23/08)

Logan had PD cath, g-tube, and mediport placement at 4 1/2 months-- 7/2008
started PD at 5 1/2 months--8/2008
Listed--12/2008--inactive
Activated--8/2009

Cadaveric Kidney Transplant 9/4/2009 (18 months old)!!!!!
Jessmomto3
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Logan's mom!

« Reply #9 on: June 09, 2009, 12:41:05 AM »

Im also fine with a child getting priority :thumbup;

But i have a question. Can a baby take a grown persons kidney?  Or does it have to be a child..
He is a cutie.  Im glad he is so happy, makes it a little easier for you im sure.


He will get an adult kidney.  That's part of why he has to be 10 kg.  And he will get his kidney in his peritoneal space which is part of why the PD is so important.  It makes room for the kidney.  It does make it much easier that he is a good natured little guy.  Recently though he has developed quite the temper.  Heaven forbid you don't give him what he wants.... 
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Jessica--mommy to Cristian (8), Jaden (4), and our miracle boy Logan (2/23/08)

Logan had PD cath, g-tube, and mediport placement at 4 1/2 months-- 7/2008
started PD at 5 1/2 months--8/2008
Listed--12/2008--inactive
Activated--8/2009

Cadaveric Kidney Transplant 9/4/2009 (18 months old)!!!!!
willowtreewren
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My two beautifull granddaughters

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« Reply #10 on: June 09, 2009, 05:02:23 AM »

Thanks fr sharing Logan's story. That was the name we had chosen if we had had a boy.  :cheer:

Of course children should be at the top of the list. Don't feel guilty about that. I hope he hits 10 K soon and gets his kidney. He needs to have a chance to feel great!  :thumbup;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Rerun
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Going through life tied to a chair!

« Reply #11 on: June 09, 2009, 06:45:41 AM »

Hang in there and I hope he gets a kidney soon.

                                   :flower;
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Jessmomto3
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Logan's mom!

« Reply #12 on: September 10, 2009, 09:03:15 PM »

there is a new update in Transplant stories.  : )
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Jessica--mommy to Cristian (8), Jaden (4), and our miracle boy Logan (2/23/08)

Logan had PD cath, g-tube, and mediport placement at 4 1/2 months-- 7/2008
started PD at 5 1/2 months--8/2008
Listed--12/2008--inactive
Activated--8/2009

Cadaveric Kidney Transplant 9/4/2009 (18 months old)!!!!!
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