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, May 30, 2012


It has been a very long day.  Much has happened today, we received some very helpful news.  The results on all the tests have been negative except one called norovirus II, which is a stomach/intestinal bug that can be fairly mild to most people but for the girls it's yucky.  This explains a lot regarding her symptoms.  We are happy to rule out graft vs. host disease.  However, it's not just as simple as a virus.  Natalie is actually (most likely) dealing with three different things, which is why she is more sick than Alice and having such a difficult time.

First, the norovirus.  Secondly, she is anemic and received a blood transfusion today...this could possibly be due to the fact that her body is switching to a new blood type which can cause hemolysis (breaking down of the red blood cells).  Last of all, the doctors saw on the echo cardiogram a collection of possible bacteria growth on the tip of her central line which drops just above her heart--possibly this is the main source of her reoccurring high fevers.  It's very likely that some bacteria was lingering from her last line infection a few weeks ago and somehow found its way to the new line....bacteria loves plastic and can make a permanent home there.  We hope to see her fevers subside with the line removed.  Strangely, there have been no positive blood cultures.  Apparently you can still have a line infection and never grow anything in a culture.

Natalie's PICC line was removed late this evening, by the nurse at her bedside. It does not require sedation like a broviac line removal. She hollered and wasn't happy, but she did it and it's over.

Now, the tricky part is managing Natalie's care without a line...not even an IV at this point. She is completely free. This is a shot in the dark, but the doctors are going to see how it goes. We will finish all her antibiotics orally, she will need to drink lots of fluid and find magnesium rich foods to fill her diet. It would be awesome if she didn't need another line. Of course, many blood draws ahead, however, the doctors are going to limit that as much as possible. Some of the labs can be done with a finger poke.
Alice had her dressing changed because she spilled Gatorade and some landed on her dressing.   Even though it may not have soaked inside we changed it anyway...better safe than sorry.  I came home to be with the boys and Evie.  They were happy to have mom for the night.  Tyler did a fine job tackling both Natalie and Alice's room single handedly.  He had big tasks to accomplish too, with Natalie's, PICC removal, and Alice's dressing change.

It's always a bummer when the girls get sick, however, we feel so fortunate that they haven't been more sick. It's amazing that they haven't had such viruses sooner or other contagious illnesses. It's truly impossible to avoid everything, we feel so blessed that we have been so healthy since transplant considering our vulnerability/weak immune systems.


Alice is so playful, she is full of energy non-stop.  I went to put the sheet on her bed and she slipped under the sheet and wanted to hide.  So I played along with her silliness.

Playing Hide N Seek with Alice.

Natalie didn't have much to say, but more today then yesterday.  She has spent most of the day feeling cold, hot, nauseous, and weak.

fish decal...great way to decorate

cute paper balls that were fun to make

1 comment:

  1. SO ADORABLE! When I walked in Alice's room I felt ilke I had known her forever! Natalie is so sweet...Emily is looking forward to playing with her soon!
    We talked about CAPTION CALL the number is 1-877-557-2227 Call them and they will bring a phone to your house. it is so nice to have...even with Natalie not being able to read yet the amplification of sound on the phone will help her so much!

    Get better soon and I hope Mom and Dad get out for a little trail running or does the body good!
    We love you guys!