The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Wednesday, December 12, 2012

A Break in Alice's Line

Last night when I was flushing Alice's line, her yellow lumen was stuck.  I pushed and pulled with the flush a bit and nothing happened.  I waited a minute and something moved... so I got excited and started to flush it more.  Well I must have got too excited because it popped/cracked and was leaking.  I clamped it and sterilized it.  I then took Alice to ICS and they repaired it.  We came home around 2:00 a.m.  The next morning Alice needed to go to clinic for TPA in her line to clear the blockage and so Tyler took her.  They spent most of the day at the clinic...and now her line works wonderfully.  This is the third time her yellow line has needed repairs.  It has been almost a year since this particular line was placed.  We are so pleased it has lasted this long.

Alice was more than happy to visit the hospital...three days in a row.  She loves it.

Each time I pass the Christmas tree in the hospital lobby I've noticed different patients observing it.  It makes me so happy when I see children in a hospital gown noticing all the familiar items on the tree...as these items don't look frightening anymore but sparkly.  It was worth it...all so worth it!

Tonight my friend Jill came to visit with her daughter Emily (who has SCID).  We could have talked for days--it was awesome talking about all the things we have in common.  There is something about talking with others who have been in your shoes...it's like therapy :)  Thanks Jill!  After a couple hours I went to inform Emily that her mother needed to leave...Natalie and Emily were having a great time.  It made me so happy to see Natalie happy.  The two girls have so much in common, they instantly became friends.

Great News....My phone was found...and in working order!  I like to think that the snow was just preserving it. :)  I feel like I have my right arm back now.  It's sad how dependent we become to our phones.

Thank you for your continued love and prayers...It's wonderful!!

Getting cozy, and hopes to stay a while.


Lisy


Posted by at 10:49 PM

3 comments:

  1. CarolDecember 13, 2012 at 8:29 AM

    I liked hearing how all of your hard work in making that tree is being helpful for kids in the hospital. You normalized the things that are scary for kids (and me!). I saw the tree in one of your recent posts but for some reason I didn't comment then. You really did a nice job on it!

    ReplyDelete
  2. Jill HeapsDecember 13, 2012 at 10:39 AM

    It is so funny how kids react to the hospital! Emily always called it "my hospital" when she was younger but by the time she turned 8 the novelty was wearing off! :) I am glad at least Alice enjoys it still.
    We LOVED visiting with you. Emily kept telling me how much fun she had and that she thinks Natalie has worse hearing than her! (It was great to see her react to someone that doesn't hear well..it's funny because they don't realize they do the same thing!)
    You have such a beautiful family. What a privilege it is to know you and call you friends! Thank you for a wonderful evening!

    ReplyDelete
  3. BethanyDecember 14, 2012 at 3:41 PM

    Primary Children's is a special place. Grace loves going there too, although she doesn't go nearly as often as your girls.

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