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.

Tuesday, May 1, 2012

Natalie is Home

Last night went by in a hurry, I wasn't able to post.  Natalie came home late afternoon yesterday.  She was so happy to be home in her environment with her brothers and sisters and all the exciting projects, games, and crafts that have been awaiting her.

To summarize, her PICC line placement was successful.  I was a bit bothered when she awoke from the anesthesia because I was not there and she didn't recognize the people from the OR.  She was anxious and scared.  Once her nurses Shannon and Kaitlyn talked to her she calmed down a little.  I had skipped over to clinic to check on Alice's situation, they paged us in clinic to rejoin Natalie.  I was under the impression that I needed to return in 45 minutes, however, the procedure was much quicker than planned.

As Natalie was in the procedure room to receive a new line, she insisted in administering the sedation medication herself....it was interesting as she pushed it into her old line it wasn't 10 seconds before she dropped off.

Natalie was such a good sport all week.  We were so proud of her and how well she managed herself.  Even the doctors mentioned that she paid more attention to them.  She had some rough moments through out the week and disappointments surely, however, all in all she was content.

The final verdict on her broviac line---it was contaminated.  We feel thankful that it was removed before anything worsened.  Her new line should last until she no longer needs IV assistance.  She came home on vancomycin (antibiotic) which is given every 12 hours through her line and takes 2 hours to infuse.  Because her new line only has one lumen and her infusion meds are not compatible it creates a bit more work on our part.  We anticipate in a week or so she will drop the vancomycin.

Natalie has an appointment with the ENT clinic soon.  We are so excited for her to receive some assistance with her hearing.  We feel she will be much happier.

Now for Alice, her ANC was down again at 400.  Gancyclovir is a anti-viral medication, but can also hinder the production of neutrophils.  Once she comes off gancyclovir we may see her counts recover. 

Lisy

                                This is Natalie and if you look close you can see the line on her chest.

                                                                      X-Ray room
 

Natalie and Alice spent some time together as we waited for things to wrap up on Natalie's end. 

Posted by at 11:27 PM

2 comments:

  1. Katie In NJMay 2, 2012 at 2:40 PM

    OH my Heavens!! Natalie and Alice are just adorable and amazing! You all are!

    xoxox
    Katie

    ReplyDelete
  2. AnnaMay 3, 2012 at 8:59 AM

    What a blessing to be together as a family again. I was a little upset with Caroline this morning, and reading your blog always makes me resolve to be a better mom and be more grateful for my infinite blessings. Thanks again for sharing your story. I hope we can see you again soon.

    ReplyDelete

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