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.

Monday, July 2, 2012

CT Scan for Alice--Clinic for Natalie

Another busy day--Alice had an IV placed for her CT scan.  The contrast they use in CT requires a lot of pressure into the vein...therefore, using her central line isn't possible as it could brake.  Just recently the IV team has been using a new thing called a J-tip.  It numbs the skin so they can't feel the needle poke.  It is amazing!  I wish they had J-tips years ago for the hundreds of times Natalie had to be poked.

Alice's CT scan looked fine...nothing troubling.  I was impressed with how well she held still.  Her breathing difficulty is a viral process that will improve over time.  Possibly the doctors are thinking that she has had this virus all along...even before transplant--but that it's just showing an uglier face right now or that she has been immune suppressed so long that it is catching up to her.

It's funny what Alice understands.  Her oxygen monitor was alarming the other day because she had taken the nasal cannula off.  The nurse came in and asked Alice to put it back on--she just pointed up to the monitor and said, "no, you just push that button!"  (the button that turns off the alarm)

Yesterday, she pulled her nasal cannula off again and placed it on top of her nose, near her eyes.  I said to her that her nose needs the oxygen and to replace it.  She said to me, "no, my eyes need the oxygen," so I said back to her, "then your eyes will go blind," so she immediately placed it back under her nose and hasn't lifted it to her eyes again.

We hope she will be able to come home by the end of the week.

Natalie is doing well.  Her counts are good.  She seems happier each day and very willing to only eat gluten free and dairy free food.  She says that it's not worth feeling sick when she eats the wrong thing.

Thank you for the comments and helpful information.  It's true...some blood tests may not be accurate at this time in her recovery.  Her body shows reality, so we better go with that. 

I will post pictures later...I can't find my USB cable at the moment.

Lisy


 
Waiting for CT scan and pampering her IV hand
 
 
CT scan...holding very still

 
Alice coughed...one more try.

Posted by at 11:00 PM

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