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 14, 2014

Ribavirin Treatments

Update.

April 9th
The VRP (Viral Respiratory Panel-done by a nasal swab) that was done in clinic today indicated that Alice has three different viruses on board.  They are:
-RSV (Respiratory Syncytial Virus)
- Adenovirus
-Coronavirus

Treatments for RSV require 2 hour fine mist inhalations of Ribavirin for 15 sessions, during a 5 day period...all done in an ICS isolation room.  With each treatment Alice is pre-treated with albuterol to prevent lung spasms.

Counts:
ANC 4400
Hemoglobin 8.8
Platelets 124


April 10th
Hard day for Alice...getting used to the long treatments wasn't fun.  Start to finish, it takes about 3 hours.  She is in isolation during the treatment under a plastic tent.  

Alice received IVIG today, we hope this helps greatly with warding off the viruses.
Alice also received blood today.  It was a busy and hard day for all of us.

Counts:
ANC 2800
Hemoglobin 7.7
Platelets 100


April 13th
Happy Birthday Blair!

Thanks Aunt Amberly for staying with Alice so Tyler could come home and be with Blair on his birthday.  Blair is 7!  He had a fun birthday.  Clam Chowder for dinner and more fun with cousins,  piñata and cake.


April 14th
Alice receives her last two treatments for RSV today.  In between treatments she will get her monthly dose of Pentamidine-antibiotic, through infusion.  Once all this is finished she will come home and we can't wait to have her back.  I have not seen her since Thursday and I miss her terribly.  I will say I have had a chance to read and do a few things I don't normally get to do when she is around.  Tyler was on hospital duty the majority of this stay and thankfully was given a little break from Amberly.

Counts:
ANC 3300
Hemoglobin 11.2
Platelets 98


Lisy


Just settling in to ICS for another week.

Getting ready for the treatment.

Ribavirin requires this tent over the patient while the treatment is running...it helps keep the small mist particles contained.

This is what the nurses have to wear when in the room during the treatment.

Emily picked out this flower hat for Alice....appropriate for Spring.

It fits Tyler too.



What a sport!

Sleeping during the treatment...the best way to cope.

Princess game with Amberly.

Birthday boy.

Blair's favorite dinner...Clam Chowder.

Another awesome cake... hmmm.

Posted by at 3:30 PM

2 comments:

  1. NathanApril 20, 2014 at 2:41 PM

    Sorry that you guys had to suffer through Ribovirin. It was a very tough week when Sarah was on it. Sorry we didn't hear about it when you first started, we could have given you some hints and tricks that we learned during our stint with Sarah. It is always interesting to see the differences in the different hospitals. For example, Sarah didn't have goggles to wear during the treatment. They also covered the entire room with sheets. Since I stayed with her I needed a gown during the treatments as well. I wasn't covered quite like the nurses, but they did have me covered up. I spent most of the time under a sheet on my computer during the treatments. We also got some clothes pins that we used to hold the tent sides out. That meant that the tent didn't collapse on itself like I see in your pictures and video.

    Hope things are going better for you. We think of you often.

    ReplyDelete
    Replies
    1. lisyApril 22, 2014 at 9:45 AM

      Nathan,
      That is interesting. The clothes pins are a great idea and would have provided Alice with some more room. We insisted on Alice wearing the goggles, we felt like it was better protection for her eyes. As far as Tyler, he definitely should have been in a gown and mask, he just chose not to wear them. I wish the nurses would have stressed it more. The whole thing was so new to us and I was uncomfortable with the whole thing, due to the extreme toxins. I read too much about it...perhaps. That treatment is actually not used as often as it has been in past years.

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