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, April 23, 2012

Natalie is Admitted and Alice goes to Clinic

Around 5:00 a.m. Natalie came into our room feeling dizzy, thirsty, heavy and achy.  I got her a drink of water and felt her head...she was very warm.  Her temperature was nearly 103 degrees.  She was vomiting some and feeling terrible.  I called the doctor and they began preparing a room for her in ICS.  Tyler brought her, arrived by 6:30.  I stayed home to tidy things and get Alice ready for a long day in clinic. 

Natalie's fever came down with Tylenol some hours after being in the hospital and she began an antibiotic called meropenem...later the doctors started her on vancomycin, another antibiotic.   Natalie also received IVIG shortly after arriving.  The blood cultures they sent off came back positive for gram positive cocci...which is a bacteria in her blood stream (a common bacteria).  In the next day or two we hope to learn even more about the bacteria in her blood stream on a specific basis.  Natalie will need to stay in the hospital at least 48 hours with out fever, and a negative blood culture.  We are assuming she will stay at least until Wednesday.  Not too long!  The good news--Natalie's immune system has responded properly to the bacteria.  She has created many white cells to combat the invasion.  Her ANC is 9,100. 

Alice did well with her IVIG infusion in clinic.  Her counts are better this week, her ANC is 600!  Tyler and I traded places between girls throughout the day...brought back a few memories of the recent past.  Alice showed a bit of envy for Natalie getting to stay.  Alice is so funny! 

Evie's ears are improving slowly and is still quite fussy, we are thinking she has the adenovirus similar to Natalie, which is highly contagious and can cause ear trouble.   We just need time to work it's magic and let this virus pass on through.  It is still bizarre to me that Evie is practically 9 months old and hasn't been sick previously.

Thanks for all of you who keep track of us and pray for us...it's made all the difference!


Natalie welcome sign...always great to feel loved.

She slept most of the day...she must not be feeling well to sleep so much.
Her room looks so uncluttered and clean...Rm.4424

Just arriving in clinic...happy as can be.


Weight

Height

Blood Pressure and Oxygen Level

Leaving the hospital but not without watching the train in the rainbow cafe pass by.

There goes the train.


Lisy
Posted by at 10:53 PM

2 comments:

  1. Jill HeapsApril 24, 2012 at 8:22 AM

    We love you!! I hope Natalie and Evie get better very SOON and that Alice stays free from it!

    ReplyDelete
  2. AnnaApril 24, 2012 at 10:12 AM

    We'll make sure to pray extra hard for all of you. Good luck!

    ReplyDelete

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