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, November 11, 2013

Day +25 & Feeding Tube (NJ)

ACN: 4500 Hemo 7.9 Platelets 62

This morning when the doctors made their rounds they were still encouraged with Alice's progress even though her ANC went down a tad. There was talk about her needing blood because she dropped below 8.0, however the doctors chalked that up to the types of meds she is on.We decided to not give blood in to see if she can muscle past the drop. Another issue discussed was her mouth sores and the pain she continues to have when she takes her oral medicine. She is not eating enough. If she can not eat more, she can not be discharged from the hospital. Not to mention again how tough it is for her to ingest her oral medicine. So, the discussion of the day was whether to insert a feeding tube through her nose. The benefits would be: both food and medicine can be administered through it, and she would be able to go home with it and without having to show the doctors she can swallow food. I sat down with Alice and explained in detail the pros and cons of the tube. When I finished explaining, I asked, "Alice which would you like to do, the feeding tube or show the doctors you can eat and do more oral medicine?" She quickly said, "Dad, I want to do the tube." So we did. She did quite well with the process even though there was no anesthesia given. It will be a pain for the first couple days, but she should get used to it. In addition it will be a much easier experience giving the medicine through the tube instead of negotiating with her for an hour both morning and night to take her oral meds.

Originally we talked about a NG feeding tube.  This is easily inserted by a nurse or mom and dad.  An NG tube however will not entirely help.  Her tummy is still healing and will likely not tolerate much in it.  Therefore, the NJ tube bypasses the stomach and delivers the medicine and nutrition into the small intestine.  Lisy was happy to hear about's better for Alice, and she won't barf up the tube several times a day.  Lisy was not looking forward to replacing the feeding tube over and over.  Alice will gradually get used to the tube with time.

*A nasojejunal, or NJ, tube is a small tube that is passed through the nose and guided into the jejunum (small bowel). The tube is used for feeding children who cannot or will not obtain adequate nutrition orally.

I know lots of kids read this blog, so I like to add as much medical information as I's a great way to learn while doing something you already do.  I'm guessing there are some future doctors and nurses out there. :)--Lisy

Today she really enjoyed the emails sent from all of you. I read each one to her. It really lifted her spirits before we went down to get the feeding tube inserted. Thank you everyone for all the words of encouragement you continue to give. It lifts Lisy and I up so much to know how much you care for our family.

The Feeding tube inserted was a NJ tube, which means it's more permanent and requires to be placed in fluoroscopy,  where the doctor can see that the tube is being place securely into the small intestine.  


  1. Hope Alice starts to feel stronger with the NJ nutrition and I'm glad to hear she doesn't need to take her medicine orally. Prayers for lots of healing for your sweet girl!

  2. Oh sweet Alice! We pray for you every day! We love to see your healing and the hand of the Lord in your life and that of your family. You are such an example to us!!! kids are dying to know how you do your awesome time lapse videos. Is it an ap you use? My kids love the ones where Alice's toys take on lives of their own to cheer her up. :)