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.

Thursday, April 26, 2012

Surgery For Natalie--Day 100 for Alice

Today has been a very long day for us.  I was informed this morning that Natalie was able to go home today and things were looking good.  Normally I would have been very happy to hear the news of going home, however, I felt very uneasy about leaving, I have been concerned about her central line possibly being infected.  The doctors told me it was my call regarding going home today or in the morning.  I called Tyler and told him I was a little apprehensive for Natalie to go home, and he expressed equal feelings.   I wasn't sure how I would break the news to Natalie that we would be staying I decided to hold off for a couple hours to see how the days events would play out.  

Shortly after Tyler and I decided to stay another night, the nurse practitioner Brenda came in and said...never mind, Natalie will not be going home, her cultures grew out positive again and things were not looking good.  Brenda said she and the doctor feel like the central line needed to be removed asap.  She told me not to let Natalie eat anything, in the event she will go to surgery. Brenda called down to the operating room/surgery to see if Natalie could be added to the schedule for today.  No luck, the schedule was full.  Brenda said it would have to wait until morning.  The OR was not able to arrange for Natalie's line removal today.  Brenda gave me the green light to let Natalie eat now that she will not be going to surgery.  I was not content with this news and told Brenda that I was not going to feed Natalie anything in the event that somehow the OR schedule may change.  I was worried, because a line infection can turn critical in a hurry--even though Natalie was stable...I didn't want to take any chances.

Once everyone left, I thought to myself...Okay, now what do I do--I have a situation on my hands that I really can't control nor am I comfortable with--I am worried about my child, I need some help.  I decided to pray and be very specific.  I basically said that if this line needs to be out today then Heavenly Father please make a way for this to happen.

About two hours later a surgeon walks into Natalie's room asking me what the need is.  I told him we need to remove her line.  He asked me if she just no longer needed it.  I said well she does but we suspect that it is infected.  He looked at me and said, "Okay, it will come out today!"  He then said, we can only operate if she hasn't eaten anything in the past several hours.  I was so relieved to tell him that she hadn't eaten anything.

Who knows what might have happened, but I'm thankful that we don't have to find out.  With the line removed, we hope she will improve faster.  Natalie was not happy about the IV that has temporarily replaced her main line, but she seems to have made a decision to be okay with it.  We hope by Monday she will be able to have a PICC line placed in her arm so we can finish her IV antibiotics at home.

The surgeon emailed me a picture of her central line after he removed it.  I had requested that he send a sample of the catheter to the lab for testing.

Throughout the day I was on the phone with pharmacy coordinating Alice's medical supply delivery, and arranged to have a nurse come to the house to help Tyler change Alice's dressing.  I also tired to arrange for Natalie to have her ears cleaned out during her operation.  I didn't think of it soon enough or it may have worked.  Her hearing test isn't accurate because of all the fluid behind her ear. 

Needless to say I'm a bit tired and finally took my shower at 10:00 pm--so much for getting ready for the day.  I don't have my calander with me to double check, but I think today is 100 days for Alice.  I will make her a tribute post and back date it for today.

Today we watched "Enchanted" our favorite movie that we always watch when we are in the hospital.  We painted more rocks, put some scripture stickers in Natalie's new set of scriptures she received at her baptism.  We colored.  I told her funny stories about things she did when she was a toddler. Natalie even had a little school session today from the hospital educators group.

Natalie and I also watched a video she took of Evie with her iPad days ago. It made us miss her. Natalie said, "I just want to kiss her fat cheeks."  

Tyler has been doing a fine job taking care of everyone at's only been a few days and I miss him already. 


*Coming soon...nurse tribute, doctor tribute, pink bucket tribute and the untold stories.

Natalie coming back from surgery to her room in ICS, upon awaking she complained that her chest hurt where her line was.



  1. You are so in tune with your children's needs! I am so glad Natalie has her line out. It is so scary when they get infected. Our Emily had about 5 or 6! Keep up the great work and tell Brenda "Hi" from the Heaps :)

  2. Sending prayers and strength your way! You are an amazingly strong family but I'm sure there are days where you don't feel strong. That is okay though because sometimes our little ones are strong for us. May God hold His hand up and heal these sweet girls and give you both strength as parents to make it through this incredibly difficult and exhausting journey.


  3. Oh Fish Family! I haven't posted for a while and I apologize for that. I do still read your blog daily and we continue to pray for you daily. Good luck with Natalie! We are so grateful your prayers were answered with her surgery. What an amazing experience - I am sure you have had many of those! Thanks for sharing all the details - that can't be easy. We love you and pray all is well soon.