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.

Saturday, June 30, 2012

Alice Returns to the Hospital

Yesterday (June 29th) I took Alice back to the hospital.  Her breathing was labored when she woke in the morning and I could see her ribs each time she inhaled.  I knew her oxygen saturation levels were lower than desired and that she would require oxygen.  Tyler and I weren't thrilled about going back to Salt Lake, so we took her to our local pediatrician in order to check her oxygen levels.  Being up and active she was at 87%.  The bone marrow team wanted her back for a night or two to monitor her lungs.  We came home from the pediatricians and packed our bags (or just grabbed our bags from the day before when we brought her home), it was great--we were already packed.

Last night they informed us that she has Rhinovirus.  The common cold...however, for Alice it's the uncommon cold.  This is the same virus she had before transplant.  We are relieved to know that it's something that can improve with time rather than something unknown and unpredictable.

Good news, her headaches have subsided.

The plan is for her to return home tomorrow (Sunday).  She will require oxygen while she sleeps until this virus passes.  Luckily sleeping with a nasal cannula is something we can manage at home.

She hasn't been as cooperative during the past few hospital stays as she was during transplant.  Maybe she is ready to be well.  We are thankful the times she was more willing and cooperative happened during transplant...what a blessing that was for Tyler and I--as well as Alice.

Thank you for your prayers and thoughts....it makes a big difference!

Lisy

 The A/C was out hospital wide and the rooms were getting very warm.  I thought it was perfect...I'm always cold, in fact I was considering putting socks on my feet.  However, Alice was hot and sweaty...or a sweatin' hottie.  That extra hair is so cute.



                        She played in the middle of this little farm town we built for at least two hours

                                                    Passing time putting stickers on the bed

                                    She wanted to feed her little mouse some of her hot dog

                                                   Her mouse is named "MOUSE"

                                                     Dad and Mom trading places

1 comment:

  1. There are no words that could adequately describe the emotions I felt watching this clip. Know that Precious Father God is in that hospital with you. He is at every bedside and guiding each and every doctors hands. I hope you know Him because your son, daughters, wife and yourself will be jaw dropping testimonies to His strength in all of you.

    ReplyDelete