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.

Thursday, October 24, 2013

PICC line, Day +7

Today was such a hard day for Alice. The mouth sores are just unbearable. She is on a morphine drip now and it seems to help her through the rough moments. She will sleep much of the day, and when she is not sleeping she is throwing up blood into her pink bucket.
Busy day, she needed two platelet transfusions, one in the morning and another in the afternoon.  Alice's doctor's came to me this morning and indicated that she needs another highway for medications.  She receives currently 32 IV meds; and the two lines she has are not sufficient.  There was an opening in fluoroscopy last minute, before I knew it she received a PICC line in her left arm...she bleed so much, thus the second infusion of platelets.
This new line provided an opening for her to receive much needed IVIG.  Thankfully she got this today.  Due to her higher levels of CMV the IVIG was urgent and necessary.
She had high fevers all last night, I was very worried.  The doctors changed her antibiotics today to meropenem and vancomycin.  Nothing has drawn out in cultures yet.
The doctors doubled her morphine intake and scheduled her anti nausea medication more often...all this has helped greatly.  Lisy came tonight--a day sooner than planned, she was settling down by the time she arrived.  She soon asked mom to read her stories and sleep in her bed with her.
I ache for her. At one point in the day and after doing all I could to make her comfortable she finally fell asleep. I watched her for a while and then had an idea to make a short time lapse film of Alice's princess doll paying her a visit and kissing her on the head. I thought it turned out well enough for a first time try. In the least it helped me focus on something else for fifty minutes. I was grateful for the time. As I took her pony tail out today a handful of hair came with it. It won't be long now...... Tyler






Aunt Jessica brought Cooper by to visit and this made all the difference for Alice, she really perked up and seemed to feel better.  This time-lapse shows when Alice leaves and returns from surgery and her playing with Cooper.





Natalie had an appointment with pulmonology today in Riverton, her PFT was great and she sounds fantastic.  This is the first time in a very long time that we have received such happy news regarding her lungs.
Evie had a great time with the bubbles...as you can see...she couldn't stop hugging them.

Posted by at 9:10 PM

2 comments:

  1. Jill HeapsOctober 24, 2013 at 9:59 PM

    Alice will LOVE this!! Prayers!!!

    ReplyDelete
  2. BOctober 25, 2013 at 9:19 AM

    Oh we send so many prayers to Heaven on behalf your your sweet Alice, you parents and her siblings. I put your names in the temple yesterday. Bryson will have his Eagle Court of Honor next Wednesday. I love that you took time to help him with that. Thinking of you.

    ReplyDelete

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