Proud Parent- Pediatric tx

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Proud Parent- Pediatric tx

We all love to see photos of children. This group is for all the proud Moms, Dads and Grandparents out there. Please post along with your photos, your organ tx type and what transplant center your child/teen is being treated at.

"Kiss Baby" by JudithTo visit more of Judith's beautiful work http://www.raccoonridge.com/

Members: 38
Latest Activity: Feb 24

If Your Child is in Need of a Lung Transplant

  
Janet-Sarah Murnaghan Lung Transplant- Facebook Page
"I am explaining everything I have learned about lung transplant because 1) If you are in need of one right now I want your loved one to LIVE, and knowing the details may make all the difference, 2) I want to effect change for ALL. When someone needs a lung transplant all your energy should be on loving and supporting that person --- not fighting and negotiating a system that is broken. We will make this change but it will take TIME. In the meantime knowing the facts might safe your life."Janet Murnaghan

Discussion Forum

Please share your photos

Started by Hostess Risé. Last reply by Joe Apr 8, 2013. 4 Replies

Add your pictures here

Started by Hostess Risé. Last reply by Shelly Jan 24, 2013. 6 Replies

Tips for helping your children sleep well

Started by Hostess Risé Feb 22, 2012. 0 Replies

Comment Wall

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Comment by Shelly on April 8, 2013 at 11:33am

Hi Melissa, congrats on your daughter's transplant!  It is a bumpy road, even after transplant.  So many people (who don't deal with this) think once you get a transplant, you are cured!  I wish that were the case!  My son was transplanted at UCLA, but we live in Montana.  He did not really have ANY restrictions as far as going out.  In fact, just days after his kidney transplant he was in the pediatric playroom without a mask!  Of course I washed his hands often, but.....wow.  He also never wore a mask when we went anywhere else.  He went back to spec ed preschool 2 months post transplant and did not get sick once that year!!!  We were only told to avoid crowded indoor things, like a movie theater.  Otherwise we were fine.  His transplant was in June though, so we had nice weather and could do a lot of things outside.  As they get farther out from transplant, they will lower than anti-rejection meds and they will have a stronger immune system.  Bryan's second winter post transplant he ended up in the hospital 3 times!  But that year he was in regular kindergarten, special ed class, and 1st grade class, so he was around about 90 kids each day at school.  In preschool there were only about 8 kids!  He hits 16 years post transplant this June and the last 7 years or more, he's not required hospitalization due to illness at all!  He's probably the most healthy of all of us!!!  Glad she's eating and his creatinine is so great!!

Comment by Mark on April 8, 2013 at 10:37am

I am always deeply inspired by the selfless determination of parents like you and your husband in your efforts to save your child. There really is no greater love than this. Good luck in your journey and I hope you enjoy every moment you have with each other along the way. Thanks for helping me to start a new week with a smile on my face :)

Comment by Melissa Haber on April 8, 2013 at 10:12am

Hi all, my 4-year-old girl, Daphne, had a kidney transplant a bit over a month ago. My husband, her Daddy, was the donor. Daphne has had kidney disease since birth, when her identical twin sister died suddenly. We were able to do a preemptive transplant, but she was very close to ESRD. The surgery went well, but recovery was extremely tough. Daphne is small for her age, and the kidney is quite large in her abdomen. She is now doing fantastic. Last creatinine was 0.4 and she finally eats like a normal child! We are still geting labs twice a week, tweaking Prograf levels and making sure everything is OK. The weather is finally getting warmer, and we are struggling with keeping her home now that she has so much energy. I am terrified of her getting sick. Her nephrologists each give us a different opinion on how much we should limit exposure, but they said we could send her back to nursery school at this point. I know we can't keep her healthy forever, but 4-year-olds are not exactly reliable in terms of hand-washing and keeping hands out of their mouths. :-)

Comment by Shelly on January 24, 2013 at 5:30pm

Hi all!  I'm new here, but not to transplant life!  My son was born with kidney failure and expected to die at birth or soon after.  He was way too stubborn for that!  After only 4 hours on a vent and a day with oxygen he was breathing on his own, but only had 10% kidney function.  With two surgeries (hole into the bladder and holes into his kidneys) along with special formula and lots of meds, he made it to 10 months old before needing to start dialysis.  He was on peritoneal dialysis for just over 4 years (with 3 weeks on hemo while healing from another abdominal surgery).  I was able to donate one of my kidneys to him when he was 5.  It's been a LONG journey, but he's doing amazingly well.  He's now 20 years old!!  He's been through rejection and medication toxicity, but over all his life has been amazingly smooth!  He also has autism, which makes things a bit more difficult, but after his transplant he started talking and being more aware!!  Developmentally he's probably more like 12 or something, but he's alive, he's doing well and this June will be 16 years post transplant!!!  The last 7 years he has been super stable with a creatinine around 1.4/1.5!!!!  No hospitalizations for illness....even had his gtube removed (finally) when he was 18!  Anyway, sorry for the long post, just wanted to say hi and I hope to find other parents and caregivers to children with transplants as well as talk to people who can tell me more about how my son might be feeling since he is not really able to communicate as well as most.  I also have another little boy who is 7.  He also has autism, but thankfully no kidney issues!!!

Comment by Christine on January 3, 2012 at 12:06am

I would love to speak to anyone who has questions about the double lung transplant. I had one last year and i love sharing my experience. I always wanted to know about it before i had mine, but didn't really speak to anyone that had one in depth.

Comment by silverninja66 on December 1, 2011 at 2:26pm

New to the site and I am the proud momma of a 2 year-old miracle named Vinnie... a kind family in Kentucky donated life to us in the form of new intestines for my son in May 2011.  They told me first winter after transplant might be a little rough they were right.  Overall he is well and we SO thankful!!  Every day!!

Comment by DeAnna on October 27, 2011 at 8:50am
sorry about the HUGE pic..still figuring out how to post them the right size..lol..I am getting there though... These two pics are of my 9 year old daughter Kaylynn who is also 9 years post heart transplant as of June 29th...
Comment by DeAnna on October 27, 2011 at 8:48am
Comment by Hostess Risé on October 6, 2011 at 12:22pm
Faith- beautiful girls! Thank you for sharing pictures. Post more soon.
Comment by Faith on October 6, 2011 at 10:20am
My girls Eliza and Erin.  Born 8 and 10 yrs after my pancreas and kidney transplant.
 

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