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StephanieEgli

Reherniation - Almost age 3 - Niklas

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StephanieEgli
, 05-07-2013 at 05:23 PM (3874 Views)
Niklas had an annual check-up/x-ray early March 2013. Once again, they saw a grey area and requested MRI. They have been asking us to get an MRI for over a year. For many reasons we decided against it until now. A few days after MRI the doctor called and stated Niklas has reherniated. They met as a team and reviewed Niklas's x-rays and recent MRI. He has a small hole interally allowing a small part of his spleen and colon pop thru to his chest area (approx size of knuckle) the doctor's feel it is best to wait and let him grow and gain weight.

Any advice or opinion on this? Should we let it wait? I'm nervous about an emergency situation and/or bowel obstruction. Hes fine and has been all this time so part of me agrees with the doctor(s) - UCSF. However, the other part of me (his mom) is scared. He will eventually need surgery. May be in a year, maybe 3 years. What we need to pray for is: complete healing (God pushes those organs down and closes the hole himself, if not protection that Niklas doesn't have symptoms where an emergency surgery is needed (bowel obstruction).

Any thoughts, prayers of course!

Niklas wes born 7/7/2010 left side CDH. Laproscopic repair NO PATCH! Oxygen for 9 days. Hospital total 26 days and NO repiratory issues or major issues since. Pneumonia at age 9 months and minor acid reflux. He currently weighs about 27 pounds and will be 3 on July 7, 2013!

Thanks & God Bless,
Stephanie & Family
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Comments

  1. Chris and TracyMeats's Avatar
    Stephanie, it is so good to hear from you! Please post this question under the forum section too, under the survivors is fine or any other topic you think it would fit. So many of our parents forget these blogs are here and they are not read as much as the forum threads are. I am sure others would have some advice too.

    I am so sorry to hear Niklas has reherniated. That is great he is not showing any symptoms of a reherniation. Is he in any pain? Affecting his breathing or eating that you notice? I too would be concerned about leaving it, but UCSF have well known doctors in the CDH field. With only a knuckle portion of spleen and colon up, the hole must be very small. I have heard of doctors waitng to do the surgery for a child to grow and gain weight, makes it easier to recover from a big surgery. In older kids, when the child is not showing symptoms, the surgery will not always happen immediately for different reasons.

    Just watch him for reherniation symptoms (breathing issues, eating difficulties, bowel obstruction symptoms, vomiting, he is in pain, ect...)....but I imagine the doctors are just wanting Niklas to be stronger for another big surgery. How often will they be checking him now that they have found the reherniation?

    Praying for Niklas! He is so much stronger this time around, when the time comes for surgery, he will do great and the recovery will be so much easier than his NICU recovery.

    (((HUGS)))
  2. JadeHunt's Avatar
    Stephanie,

    Sending you, your family and Niklas many prayers and support! If you ever need anything, don't hesitate to reach out. God bless each of you!

    Blessings,
    Jade Hunt
    Mother of Angel CHERUB Liam "The Lion" Anthony Hunt
    (05/22/2011-06/25/2011)
  3. GertrudeEvelyn's Avatar
    Hello Stephanie , my prayers goes out to you and your family. If you don't mind me asking what is the difference with the patch and laparoscopic repair. My daughter has the patch and I worry all the time. I know I should keep the faith but I am always concern about the patch moving etc. I am not sure what will out me at ease, she has another follow up in October she is only 11 months on 9/25. Any information would help, wanting to know the likely hood of this happening.