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 22, 2012

Code Blue--Emergency PICU

Last night after Tyler and I put the kids to bed, I stayed up for a minute to make a post. It was a busy day yesterday, much to record. I finished my post just before Evie woke. She wanted to eat and be cuddled. I was enjoying every second with her. I love holding my babies when everyone else is asleep, because it is our time to be together without any interruption.

By 2:00 a.m. I was just laying Evie down when I heard Tyler's phone ring. At that moment my heart dropped. I knew something was wrong...the ring tone was Tyler's dad's who was with Alice. I wanted to wish the call away, but my heart was telling me another story. Tyler woke in an instant and ran to his phone. All I heard was Tyler telling his dad that he was on his way. Then Grandpa called back and said you better bring Lisy too. I burst into tears and scrambled to find my shoes and glasses. We must have drove 90 mph the entire way, we made it to the hospital in 30 minutes-what normally takes 45 minutes on a good day. Thanks Michael for coming to watch the kids.

Upon arriving we learned that at about 1:45 a.m. Alice was given a code blue. When a code blue is signaled all emergency personal from around the hospital rush to the room. The room filled with eighteen people within 45 seconds, according to Grandpa Fish. Alice was rushed to the Pediatric Intensive Care Unit. She was taken to CT scan and MRI.

What Happened?
Alice was lying in bed when her body began to seize. Grandpa heard her wrestling around the bed and checked on her. He knew something was wrong; she was bleeding from her mouth.
He called for the nurse; she took one look at her and signaled the code blue. Tyler and I came straight to the PICU, upon arriving she was still having some seizures and was mentally gone. I can't really describe how she was, nor how I felt. I wanted to be angry, I wanted to cry, and I felt hopeless. I could hardly be in the room and see her this way. The intensity of the team caring for her in resolving the matter was what felt like to me an eternity of time.

Tyler and his dad gave her a priesthood blessing ad mist the was comforting and calming for me as well as Alice. I am so thankful for that special powerful feeling that accompanies the priesthood.

The doctors are still sorting out what happened. The possibilities are PRES (Posterior Reversible Encephalopathy Syndrome) caused by high blood pressure, or Encephalitis (viral infection of the brain), and I can't think of the third one off the top of my head...we didn't sleep last night and I can hardly gather my thoughts.

Oh I think the third option was a side effect or reaction to a drug called Foscarnet. She has been receiving it for sometime now, but she was currently receiving this medication when the trouble began. The doctors said that this drug can cause such an event---10% chance of this reaction.

She was given high doses of Ativan to control the seizures, in which the Ativan has caused her to hallucinate tremendously. Ahhh....I just want to make it all go away. We have already done this before with Natalie and it's the scariest thing a parent has to go through. There is hope that it can be resolved, depending on what it is. We are praying that she will not have any damages or any long term affects of the seizures.

Also Alice was beginning to fill many diapers with a high volume of urine, I could tell she was very thirsty. I asked the nurse to look into the high urine output. They checked her sugar level and found that it was 1250. That is off the charts high. They ordered her some insulin immediately. It spiked most likely because of the different meds that she is on. It also began to come down on it's own, and now is manageable. She is not a diabetic, nor does this mean she has diabetes.

Alice received platelets today and IVIG.

Oh Sweet Alice...I find comfort in knowing how many
people are praying for her. Thank you everybody!!



  1. You don't know me. I went to school with Adam and Michael and have been following your blog since the first time I heard of the horrible news. I pray for you daily and my heart aches for you. As a mother myself, I'm in tears with each post you write as it hits too close to home. May God bless you and your little ones forever.

  2. Oh, hugs Lisy. We love you and are praying for you every day.

  3. We love you! I am SO SORRY!!! Alice is STRONG! She is in the Lords hands!

  4. We LOVE you so much and are sending HUGS your way.

  5. Oh you guys! My heart is breaking and my eyes won't stop watering! Atavan, seizures, encephalitis...this is all too familiar for me. PICU is a hard place to be mentally. You are so in my thoughts and prayers! I have not been able to get little Alice out of my mind for the last few days. I felt such an urgency to ask for others to fast yesterday. It is crazy how the Lord works!

    Hold on you guys! I know this is so so hard! Alice is totally in the Lords hands. Trust His will....whatever it is. The hardest part is not knowing, so I spent a lot of time reminding myself that the Lord knows, and I just need to have faith that anything is possible and then trust that all things are in his hands and have a purpose. No matter how hard they get.

    Please keep us posted! There will be a LOT of faith coming your way tonight and tomorrow!

  6. I am so sorry you and poor little Alice are having to go through this hard time. My heart is breaking. I can't imagine what it would be like. Me and my family pray for you everyday and will continue to do so.

  7. Just wanted to add my prayers and support for you all as well -- such a tremendous burden you carry.

  8. Hello Fish family,

    My name is Anagha and I learnt about Natalie and Alice through Single Dad Laughing. I have been following their progress on your blog since then. When I read this post I couldn't help but imagine bubbly Alice lying in the ICU and found myself almost willing her to recover from her seizures. I can't imagine how heartbreaking it must be for your family. My prayers are with you and your family. I hope Alice and Natalie recover and begin leading a normal life soon. Love, from India.

  9. We said prayers for you at Mass tonight. You are not alone, we are all sending love your way.

  10. I don't know you personally, I was introduced to your blog through my friend. After reading this one post (I work in healthcare) I know how scary these scenarios can be. You are in my prayers and I know it is difficult, hold on. There is always hope. We have great hospitals and physicians in Utah. Know that people love you from near and far.

    Best of luck to you.


  11. Thank you for keeping us posted, even though I'm sure it breaks your heart to write some of these things down. I love you and your family so much and I hope and pray that things start to pick up. I'm excited to fast and pray for Alice tomorrow. I know the Lord will bless you all.

  12. Lisy and Tyler I am so sorry. I hope things are resolved quickly for little Alice and she can be comfortable. Our family is praying for you!

  13. Please know that you are in our thoughts and prayers. If there is anything we can do we would love to! All our love to you and your family.

  14. We don't know each other, but I found your blog last night through someone else and sat and cried as I read the whole thing from start to yesterday's post. Your family is just amazing to me. I pledged money to PCMC last week during KSL's radio-a-thon, as I do every year, but when I opened the envelope from the mail today, I found inside a letter from your sweet Natalie. Having just read her story last night, it really touched me and brought me to tears again. Your family will now be in our families' prayers as well, especially for Alice at this time.