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, June 7, 2012

PICC line and Scopes

The past few days have been terribly long and difficult.

On Tuesday we had hoped to have Natalie's PICC line placed--due to scheduling it didn't work out.  She had been fasting most of Tuesday.  Then Wednesday she fasted for the PICC line placement, which went well.  In her mind she knew she could eat after the PICC line was finished...however, moments before she was going to eat the GI doctors Guthery and Varier stopped by to examine her.  Between Bone Marrow doctors, Infectious Disease and GI it was decided that she needed a colonoscopy and upper endoscopy to obtain biopsies of her esophagus, stomach, small intestine and large intestine.

She was devastated when she found out that she couldn't eat after waiting so long, in addition she would have to drink about three liters of a flavored laxative.  Sweet Dr. McManus came by shortly after and told us it would be alright if she wanted to eat some soup.  Natalie was so happy to eat something.

As we began the "go litely" drink (laxative), we could see that it was going to be nearly impossible to accomplish.  It was a fight every 10 minutes to get her to drink 1 ounce.  This had to happen all night in order to finish it all.  Tyler and I knew that we had no option except to place an NG tube (feeding tube).  This was terrible, she struggled with the placement.  She complained about the discomfort all night.  However, it was easier than forcing the fluid down non-stop.  By morning she heard mention that she didn't need the feeding tube anymore, so by the time the nurse came in to remove it, she had already done it herself.  Go Natalie!!!  I would have done the very same thing.

The rest of the morning was spent in the bathroom....she was ready for her scopes.

By this time she was getting more tired and Noon (today) she was in the operating room.  Dr. Guthery took several pictures for us and said everything looked very good.  He was actually impressed to see such healthy looking insides for someone who just went through bone marrow transplant.  This made us feel so happy.  The biopsies will not be back until Monday possibly.  He feels like they won't be able to find anything.

Some things they are looking for with the biopsy are CMV and Graft vs. Host.

After she woke she was ready for her room and wanted nothing to do with the OR recovery room.  She slept for several hours upon arriving to her room.  It was so cute because once she felt well enough to eat, she ordered steak, soup, 2 bananas, popcorn, cheesecake, and ate most all of it.

She was so happy, and every time I talked to her she tried to hold back a giant smile.  It was so comforting to me to see her smiling and eating yummy food.

Natalie received more platelets today.


Alice is doing very well.  We think the reason she had to come back this past Monday was because a small source of infection in her diaper area, possibly due to a blocked gland or something.  The surgeon came to her bedside to lance it and drain it.  They gave Alice a bit of morphine and benadryl to ease the pain.  She managed very well---it was impressive, considering how much it must have hurt.  Since she has not had another fever.  Alice will go home soon on an antibiotic to clear any lingering bacteria.


Alice likes the cream and stacks the cookie part...she calls them black cookies.

Inside this room is floroscopy where they place the PICC lines and such.  We have been in the Jazz locker room many times.  This past time I could hear her from outside the room calling, "I want my Mommy".  It was hard for me, even though I knew she couldn't feel anything and wouldn't remember anything, it was still hard.  She even called for her baby sister.

Natalie getting platelets.

Today she required a nasal canula, and was not happy about it.

The terribly uncomfortable feeding tube.

Arriving at Endoscopy.

Getting ready for the scopes.

Just falling asleep.

While Natalie was sleeping in the OR Dad was sleeping up stairs.




  1. I have a couple of friends with celiac disease, they manage just fine. Check out the following website:

  2. Oooo little diva, love those glasses Alice! Carmindy keeps asking where our friend Alice is when we go to the Walmart in cedar hills. They took down the little table And all the cute pictures, too bad, that should be a standard fixture.