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.

Wednesday, February 27, 2013

Drain Tube Removed

Yesterday was very hard for Tyler and Alice...She was miserable and in much pain.  Her drain tube didn't appear to be helping.  The doctors were discussing the options of removing the drain tube with the understanding that if it worsened they would have to do surgery and be more aggressive with it in order to clean out more infection.

Tyler called me at 11:00 a.m. and asked that I come to be with him sooner than we planned, as I was planning to switch places with him anyway.  Tyler needed relief as much as Alice.  He surely had a hard shift.  It can be so exhausting when things aren't going smooth.

Shortly after I arrived the resident surgeon came to examine the infected area and assess the drain tube.  Tyler managed to talk her into removing the drain tube before she left the room.  Alice was given a dose of morphine shortly followed by another and quickly and easily the tube was snipped and removed.

Some time later she was able to find a more comfortable position and fell asleep.

Tyler was so on edge all morning.  Once I arrived I just gave him a pat on the back to assure him that everything would be fine...he nearly jumped out of his pants-he was so startled.  It made all of us laugh...everybody in the room, including the nurses.  A little comic relief goes a long way.  He claims I pounded his back...I assure you that my strength is not so and that he was overly sensitive.  Regardless we laughed and felt better afterward.

I warmed he and Alice some chicken bone broth soup I had made the night before and froze in small baggies.  They both seemed much more content afterward.  I was so glad I took the time to boil a whole chicken and make a wholesome soup for them.  I even broke open the bones so the marrow would cook into the broth.

Alice said this morning that she thinks the "chicken broth bone soup" has made her owie better already.  She loves it and continues to want more.  I'm going to need to make another batch.

Indeed her infected area does look better today...a decent amount better.

The drain tube needed to be removed, we have been cleaning the area very thoroughly, and she has been receiving neupogen through IV...all of the above have been helping.

Last night she slept almost the entire night with the exception of a huge blow out was an ordeal to clean.  Regardless, it was likely her best night since we came in.  Sleep is good!

In the meantime the bone marrow doctors have located a 10 out of 10 match for Alice.  The process to finalize the match takes several weeks.  There isn't a huge rush, but some, as we are allowing her body a little more time to prove itself.

Still much is unknown, but we already feel much better about her situation...whether we just needed the news to sink in or that we feel she has improved a little, it's hard to say.

At home Matthew and Blair are intrigued with spiders lately.  They saw a tiny little spider on the bathroom floor and were certain that it was a Brazilian Wandering Spider, the most dangerous of all ;).  Blair claims it bit him....he thinks he might be infected and could die, but he said that he has a special anti venom power and will be okay.  I continue to remind him that we don't live in Brazil.  He says, "I know Mom, because I'm an American." Each day Blair has a "new" spider bite somewhere.  I will examine him and say, "Oh wow, your anti venom must be working because there is not even a trace of a bite."  He just smiles at me.  He can't wait for summer when they can catch Daddy Long Legs and such.  I told him when it gets warm we will go on a spider hunt.  He loved it.  For me this is a big deal...I don't do spiders.  My older sister was bit three times in the same night by a black widow when we were young.  She was fine after being treated but I haven't cared for spiders fact it takes all I have to smash them.  I have to use practically a whole role of toilet paper, unlike kids who think one square is enough.  Ewww...just thinking about it gives me the shivers.  The more I talk about this I think our spider hunt will entail the driveway only and hopefully we can find a lonely Daddy Long Leg or something.

Blair thinks he can talk me into letting him have a pet Taranchula....NEVER!


Visiting Grandpa in the hospital after his surgery.  Natalie was anxious to see Grandpa.

Natalie was enjoying being the visitor and not the patient.  Evie  was getting comfortable on the couch bed that Grandma sleeps on.

Alice with Kevin and Amber

A nice bath...she said, "Hey, where's the rubber ducky?"

This is a 4T outfit...clearly too small.  Alice is swollen and hardly looks herself, I think it's cute.  She will fit it soon enough.  I just had to get a picture because it was so cute.

A visit from Barbie...a wonderful visit for Mom too.  Barbie has spent much time here as well several years ago, we talked about the life at the hospital and all the crazy things that come with it.

Alice has been practicing writing her name on the iPad.  She now has all the letters represented...good work Alice!

1 comment:

  1. One minute at a time these days ;) I am so impressed with you; as always!! May your burdens be made lighter and ability to deal with all of this be strengthened! We love you!! I am so glad Alice has a perfect match... ;)