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Thread: Infant on PD

  1. #1
    Anonymous Guest

    Default Infant on PD

    I am the mother of a 3 month old who has been on peritoneal dialysis for over a month and is still in the hospital. He was diagnosed with posterior urethral valve obstruction which lead to dysplastic kidneys and ESRD shortly after birth. He will need a transplant some day but I first want to get him home. Some days I wonder if we made the best decision for our son but I do cherish the time I have had to spend with him. Are there any other parents out there who has had a yoing child on PD? Any suggestions for a stressed mother? Thanks!

  2. #2
    Anonymous Guest

    Default

    Stephanie,

    I cannot begin to imagine what you must be going through. My heart felt prayers are with you. My husband has just started PD, been on for 2 weeks and it has been quite an adjustment for him. Even tho your son has not known any other way of life, it has to be very hard for you. You should take comfort in knowing that PD is relatively painless and that he is not suffering. I can understand when you have doubts as to the decisions you have had to make, you only want what is best for your son. Just follow your heart and you will make the right decisions. What God has brought you to, He will lead you through. Hold your son close and savor every precious moment. Many children live full and happy lives on PD and your son should be given every opportunity to do so.

    Your son will be in my prayers,
    Gilda

  3. #3
    Anonymous Guest

    Default

    Dearest Gilda,
    Thank you so much for your heartfelt response. I know God will see us all through and He has a plan for my son. I will pray for your husband and family that the adjustment to a life of PD will be smooth and painless. Bless you,
    Stephanie

  4. #4
    Anonymous Guest

    Default Infant son on PD

    I am the mother of a 12 year old boy, who first went on PD at the age of 16 months. He has subsequently had two transplants and we are back on PD awaiting a third transplant.

    While the days when he was first sick were long, I have never regretted one moment of the time he has been on either PD or hemodialysis. I gave birth to Luke at the age of 31. If I had had him 10 years earlier, he would not have survived. Dialysis has given my son a life.

    Today, even with his PD cathether in, he made the 6th grade all star basketball team, has been a pitcher in the Little Leagues for years, was a goalie in soccer, and has had straight A's in every subject in every marking period. If I had never stuck with him, he would never have this wonderful life. He doesn't feel sick and doesn't act it, though in fact he really is! A parent's fears and worries are not the same as our kids. They want to live and play. With PD and hemodialysis, he has been able to do that.

    And to boot, we are just about to nail the genetic disorder that has afflicted him and we have a medical response for it. How about that? If we had not hung on with dialysis for these past 11 years, we would never have given him a chance to be cured.

    With medical advances and constant improvements in dialysis, life gets easier and more routine every year. It was much harder 11 years ago. I have seen medical literature on plastic artifical kidneys to be surgically inserted that no one would reject and I have seen articles that show dialysis run in something no larger than a ruler. Each year gets better and more hopeful.

    Do not give up. Your son may be our country's future Olympian or NASA scientist. We need him. Please take care of him and give him a chance - dilaysis is a life sustaining treatment. I thank God every day that I lived in a time and a country where we had the technology to keep my son alive.

    Love, Linda

  5. #5
    Anonymous Guest

    Default Infant

    Linda what a great story and most of all what a great accomplishment. It takes a great deal of fortitude to stick with this so my hat is off to you and your son. May he grow up to break the home run record………………..

  6. #6
    Join Date
    04-18-06
    Location
    massachusetts
    Posts
    21

    Default

    Stephanie I can only imagine how hard it must be to see your baby go through all that. It can't be easy, I found out I had kidney desease while I was pregnant with my third child.(long time ago now) She was born at 26 weeks, she was born with an intestinal infection but fortunately got over it in not to long a time. She has done very well since.

    Children are very resiliant, not that I think that my story makes your life easier but I hope that it helps give you a little hope.

    I'll keep your baby in my prayers and I wish you all the best.
    live like there is no tomorrow

  7. #7
    Join Date
    04-18-06
    Location
    massachusetts
    Posts
    21

    Default

    Linda

    I think you have a very brave son, to go through all that and just keep going. The thing with kids seems to be they don't know that things are supposed to keep them down they just want to get up and play.

    I hope every thing works out well for all of you.

    Also I'm very interested in where you read about that plastic kidney and also that other dialysis you talked about.

    you and your son will be in my prayers as well.
    live like there is no tomorrow

  8. #8
    Anonymous Guest

    Default My son is going on PD

    I am the mother of a 3 month old son starting PD. He is currently still in the ICU and recently diagnosed with a VERY RARE kidney disease that has afflicted less than 200 people in the world since 1960.

    The stories I have read on this post hit so close to home. I'm scared of losing him today and scared of losing him down the road. I have to think that he will not know a life differently than what he is going to be going through. I will pray that we get and new kidney next year and that we live in a time when there is PD to help him.

    I love the stories shared regarding the advances in kidneys and transplant. I look forward to the day that I will get to see my tiny baby running around and happy!

    Keep the stories coming. Stephanie, I would welcome further conversations regarding our sons progress. Let me know if you would be interested. stephpwalker@hotail.com

    Stephanie

  9. #9
    Anonymous Guest

    Default

    Thank you all for your encouraging responses. My son is now 5 months old and home on PD. Life is not typical but is becoming a "normal" routine for my baby, husband and two daughters. I am happy that we chose to give Major, my son on PD, a chance on life because he does truly deserve it. The only problem is that he hates to eat. I think he always feels full because of the dialysis. Has anyone else experienced this some feeding/eating problem?

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