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, July 16, 2012

Crazy Day in Clinic--PICC Line Pulled-IVIG for Alice

Well Today Monday...was CRAZY!! It's Day 208 for Natalie and Day 181 for Alice. We can't believe how the time is passing; although, today the time was standing still for me. For Natalie today was good. For Little Alice it wasn't as good.

Natalie had wonderful counts. She is drinking enough, eating well and feeling good. Natalie asked me many times as we drove to the hospital this morning if today she can have her PICC line out. I wanted to tell her yes, however, refrained myself in the event that it wouldn't happen. BIG NEWS...after her exam the doctor asked Natalie if she wanted her line gone. She smiled and said yes, until she remembered the stitches that had to come out too. The smile quickly turned into tears and it was many moments later that she allowed the removal process to happen. They sprayed some numbing spray on her arm, which I think helped. Her only motive to have it removed at this point was the promise that she will be able to swim once it has healed.

Then she made me promise that I would not tell Dad or the boys about her line...she wanted to surprise them when we got home.

A new thing with Natalie has developed. During the past week or two while Alice has required oxygen at night, it got me thinking about Natalie's oxygen levels...I took the monitor off Alice and throughout the night (two nights ago) I put it on each of the children including myself to see what our saturation levels are. I should have been a doctor...I had more fun staying up all night experimenting with the pulse-ox. I tested different sleeping positions on the children to see if the levels would rise. The boys were in the high 90's. Natalie and Alice were in the mid 80's. While doing this I discovered that Natalie is truly in need of oxygen while she sleeps.

We have arranged with the doctors to have Natalie on oxygen nightly as well. This is mostly temporary and will give her more energy during the day. It can be hard on the heart to have low levels for extended periods of time.

Now for Alice. Her counts are low, she likely will need blood on Wednesday or Thursday. Her hemoglobin was 7.1. ANC was 600. She kept me hopping all day. She seemed okay, although shortly after the doctors entered the room she threw up all over her and I. The pink bucket was too far away.  We cleaned up then began the exam. She wasn't feeling well and it was obvious. Alice received IVIG today--so far no headaches. Alice has terrible diarrhea, which seemed to find its way onto everything in the room.  Before leaving I wiped the room down with some heavy duty hospital style Clorox wipes. They collected some stool samples and so far everything has been negative. Graft vs. Host is now a consideration.

We hope and pray that she is not experiencing Graft vs. Host.

When I arrived home Tyler could see that I was spent. Moments later Alice had another big diaper, Tyler jumped in and changed her. Once he finished I looked at him and couldn't help but laugh--the front of his shirt was covered in poop. We both just laughed. Sometimes laughing is the only thing you can do, it's amazing the transformation that can happen with laughter.


                                                The PICC line is gone...just a band-aid now.

                                                                   You did it Natalie!!

Alice receiving IVIG with no clothes, she soiled them.

                                        Natalie loves to pass the garden as we leave the hospital.

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