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.

Sunday, September 30, 2012

Emergency PICU--Natalie

I'm not sure what I want to say...I need to post, but I really don't feel like it.  When Natalie woke this morning, she was happy and playful.  By 1:00 p.m. she said she wasn't feeling well and laid down on the couch.  Sometime later she spiked a temperature of 103.5 and seemed a bit despondent.  Her lungs sounded junky, like pneumonia.  We called the doctor, shortly thereafter Tyler brought her to Primary Children's Hospital.

I had left my phone in another room as I was trying to sing Alice to sleep, two times I missed calls from Tyler.  I later called Tyler back, couldn't reach him.  I called to ICS where I assumed Natalie was.  They told me she was not there, they didn't know where she was.  At this point I was confused.  Tyler knows not to go to the ER...what could have happened?  They left two hours ago.  I felt a little strange and nervous.

My call was transferred to the operator who directed me to the room number where Natalie was.  I told the operator that he must be mistaken because that room number seemed like a Pediatric Intensive Care Unit room.  There is no way Natalie could be there.

She was, my heart sunk.

The doctors, Tyler and I were all playing phone tag trying to reach each other.  Finally I connected with the doctor.  I wanted answers.  She explained what was happening, it was so difficult to keep from crying during our conversation.  The doctor kept asking me if I was alright.

As Tyler was driving to the hospital, Natalie wanted to hold his hand from the back seat.  They held hands as they drove the 35 mile ride.  Almost eight blocks from the hospital her hand slipped from his grip and he heard some strange gurgling from Natalie.  He looked back and discovered she was seizing.

He yelled to her and asked if she could hear him...she said yes.  He pressed on the gas, worked his way around traffic, ran a red light...all he could think about was the last few blocks of road to get her to the Emergency Department.

He parked, carried her...running for the doors...yelling for help.  Many people gathered around and placed IV's and administered anti seizure medication.  She was taken straight to the PICU.

We don't know entirely what is happening, we do know that she has pneumonia...most likely has gone septic.  There is a possibility there may be infection in her brain.  She does have a positive fungal infection as well.  Fungal infections can be very challenging because they create a barrier around the infection which makes it hard to clear.

Natalie had been improving so well from her pneumonia two weeks ago, we did not see this coming.  It is likely a combination of the same pneumonia returning plus more.  We now know that the delirium she was experiencing two weekends ago was not in fact her low oxygen levels alone, however, most likely seizing as well.

Natalie had a CT scan recently of her lungs and brain.  She also had a spinal tap.  We will know more information regarding these test tomorrow.

The CT scan was a challenge, she was greatly agitated.  Her ventilator came disconnected three times, she vomited and may have aspirated some.  It was a big process.

Natalie reached out for Tyler's hand to comfort here.  We continued to tell her that she would be okay and that Mom and Dad will stay by your side.  She is not completely sedated (fentanyl drip), so she is able to communicate.  I asked her if she wanted Jerome by her side, she nodded anxiously.

We love you Natalie...Be Strong!

Dad and Mom are both staying the night with you.  We want to make sure everything is good before either one of us leave for any reason.


 CT scan.  This was really hard to manage getting her into the scan with all the machines, etc.  Natalie had a very hard time, she was struggling to breath and couldn't clear the mucus in her lungs.  She vomited in the process and it was scary.  The respiratory therapist was very good under pressure.  Three times Natalie's vent came disconnected.  She would gasp for air.  We were so happy when that was over.  Honestly, I have not felt that afraid since Alice had a code blue.

Jerome and Natalie


  1. My heart is aching for you. hugs, loves and prayers are coming your way...She will get through this!

  2. Praying for Natalie and your family!!!

  3. I love your family so much! I've never met any of you, but oh, how I love you! I'm crying right now. I'm praying, too.
    ALL my love,

  4. Oh Lisy... I don't have words... we love you so much and you are in our thoughts and prayers!!

  5. Lisy, Tyler and family,
    Our prayers are with you all especially sweet Natalie and Alice.

  6. I have been a lurker ever since I found your blog a few months ago. I feel bad that I have never commented before. This post just really got to me. You all have been through so much - and it seems to just keep coming. My heart goes out to you. I can do nothing to help except to say that I care and I hold you all in my heart.

  7. Thinking of Natalie and all of you xxx I hope she gets better quickly!

  8. Please know we are saying prayers for your sweet girl to turn the corner and recover quickly! So sorry to hear the news.

  9. I have been a quiet bystander on here since pre-transplant and have been encouraged time and time again by everyone; Natalie, Alice, Lisy, and Tyler. I pray that I can someday be half the parent Tyler and Lisy are to all of their amazing children. I have been praying and will continue to do the same at this critical time. Much much love being sent to you- even though I've never had the opportunity to meet anyone. :)

    Eph. 3:20, baby.

    Julia from CT

  10. I'm a lurker too. Man what crazy stuff going on right now! Will keep you guys all in my prayers. I hope Natalie gets better quickly!

  11. Lisy and Tyler, I am so sorry for you guys and your Natalie. You are all such troopers. Hang in there, our family will remember you in our prayers.

  12. To Natalie, From Grace
    Lisy, please tell Natalie: I am sorry that you are sick. I wish that we could play together someday. I hope you feel better soon. You are a very nice friend. I love to play with you. You always laugh and make me smile. Thank you for being a nice friend.
    When you come home from the hospital I have more gluten free treats for you. I also want to bring you a ceramic dish I am going to make for you. Maybe I will put an elephant on it to make you smile. I think your friend Jerome is so cute.
    Right now I am doing my IVIG treatment so I am going to draw a picture for you.

  13. I don't know how anyone can get through this post without tears. You all have become so strong together and will get through this. Heaven is on your side. We love you so much and are praying for you all! Please tell Natalie that we send our hugs.

  14. Oh Lissy and Tyler,
    I don't know what to say. I'm so sorry to hear that Natalie is going through more hard times. I love you guys and will keep you in my prayers!

  15. Lisy and Tyler I am so sorry to hear about Natalie. We are praying for your darling family and want you to know we love you so much. Hang in there