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.

Sunday, July 1, 2012

Maybe Tomorrow


I was disheartened this morning when the doctors made their usual round and said they needed Alice to stay at least one more night. Their reasons were that she was not able to sustain normal oxygen saturation levels when breathing on her own. I will admit that it was a tough night for her as she struggled for breath and machine alarms seeming to never stop. It felt as though each time I was able to get her comfortable, once I sat down the horrible chime of the oxygen machine would sound. It wasn't until the early hours of the morning that things calmed down for both of us. Today the nurses taped the nasal tubes to her cheeks in hopes that she would not be able to pull it off. She certainly put up a healthy protest, but got used to it shortly after. Tonight, if she can refrain from pulling her tubes off she will be able to come home tomorrow on oxygen. The Rhino Virus she has acquired certainly has been tough on her. The logistics for the past two weeks have been taxing on Lisy and I. We are thankful for the help you all have rendered to us. For without you we could not deliver the level of care to our children as we have been able to do.

Tyler

 Alice wasn't too happy to wear the mask for her albuterol treatment.  She eventually allowed us to hold it in front of her so she didn't need the mask anymore.
Posted by at 11:06 PM

2 comments:

  1. Jill HeapsJuly 2, 2012 at 1:02 PM

    Keep you chin up! This too shall pass...when? Well, that's entirely up to the Lord :) We love you and are praying for you!!

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  2. Jill HeapsJuly 2, 2012 at 6:46 PM

    Lisy and Tyler,

    This is a message from Heather Smith. One of the most amazing women you will ever meet! She tried to comment on your blog but it wouldn't go through so she sent it to me...

    I'm so inspired by your story. I'm also a mother of two children with SCID, although my first child passed away at the age of 7 months. I've watched your video before and even read your blog before but this is the first time I've commented. I have to question the results for the Celiac Disease at this time...let me start out by saying I'm not a nurse or a doctor, just a mom who has been dealing with SCID for over 18 years. Like you said in your post, the celiac test is an antibody test and at this stage after transplantation, maybe her body isn't able to yet produce an IgA antibody response to Celiac but she could still have the disease. Especially after your recent post where she ate a cookie with Gluten in it and her tummy hurt for hours. It's so hard with these SCID kids because unless and until they have full immune reconstitution and no longer require IVIG, you don't know for sure if the test results are accurate or not. Again, this is just my opinion, so please take it or leave it, but I think the idea of keeping her on a gluten free diet is a very good idea.

    In our case my son has the symptoms of seasonal allergies but all of his allergy testing came back normal (actually his response to everything was zero). Does that mean he doesn't have allergies, I don't think so, and we treat him like he does have them. He's on IVIG and has poor B cell function so the allergy testing on him we consider to be inconclusive.

    I wish you well and please let me know if there is ever anything I can do for you or your family. I run a SCID non-profit foundation and I've spoken with your brother-in-law on the phone once before. Again, if there is something we can help you with, please contact me at Heather@SCIDAngelsforlife.com

    With kind thoughts,
    Heather Smith

    Heather Smith
    Co-founder
    SCID, Angels for Life Foundation
    States currently screening all newborns for SCID are WI, MA, NY, CA, CT, MI & CO
    www.SCIDangelsforlife.com

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