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, June 3, 2012

Happy Birthday Matthew--Alice comes home

I haven't posted in two days, the time slips away when you're having fun...maybe?  :)
                  --This post is long-trying to catch up.

Today is Matthew's Birthday, he is seven.  Matthew has been counting down the days for months, each morning (first thing) he goes to the calender and marks off that day.  Maybe now he can count down the days until Natalie comes home.

 I recall last year we planned a big party for him...we had invitations for his entire school class to come to a giant slip n' slide party with lots of old fashioned relay races.  It was going to be great.  Well, Alice ended up sick in the hospital on his birthday, and was having a PICC line placed, I couldn't be with Matthew on his birthday, but he still had a great party.  We down-scaled the games and made do without much.  He remembers it being wonderful and thanks to Tyler, Aunt Amy, Aunt Amber, and Grandma it was successful.

This year we celebrated his birthday a day early in Natalie's hospital room.  She wanted to see what Matthew was getting for his birthday.  Again, thanks to many others...he had a good birthday.  My sweet friend Nicole bought him a baseball cake, the intention was to bring it to the hospital, he couldn't wait and had it for breakfast.
I would have to say his favorite gift was his new rifle from Grandpa Schellenberg.  It's a Nerf rifle...and pretty cool too. 

This evening I told Matthew we would do something cool with him, even though Dad and Natalie are not home.  We ate Fat Boy ice creams and talked about birthday wishes.  Blair said he wished to be an American Eagle so no one would shot him.  Matthew wanted to be Dash, then decided a Bald Eagle sounded better.  I said I wanted to be a Robin so I could sing really pretty...if any of you have heard me sing you would wish this to come true too.

Okay so here's whats happening with the girls:

Alice came home late afternoon...she was ready to come home, this stay was getting a bit long for her (7 days).  She felt well enough most of the week and consistently wanted to leave her room to see Natalie or to go into the hall.  Despite the cabin fever, she was happy and playful most of the time. Her labs for Norovirus finally came back--positive.  Alice received IVIG yesterday.  Alice's last dose of steroid was today.

Tyler went last night to be with the kids.  I managed both Natalie and Alice, with a lot of help from the nurses.  When Tyler arrived today, I had most of Alice's stuff packed up....and yes, it's still in the car.  When I'm ready to tackle unloading the car, I will.  Take it all in stride...right?

It was nice to come home.  Truly, there is no place like home!  I wish for Natalie to have a pair of ruby slippers.  We hope soon she will be well enough to be home.

Natalie has done many things this hospital stay that are difficult.  Having a central line makes a huge difference, unfortunately we do not have that luxury.  She has been poked and bothered plenty, yet she always does what is asked of her...of course not without putting up a good fight.

The doctors ordered more labs today, which means another needle.  I suggested to have another IV placed in her forearm into a deeper vein using a bigger gauge of tubing to see if it might possibly draw back enough to gather labs for the next while.  It went better than expected.  Primary Children's has the best IV team.  They are amazing.  Hopefully the IV's hold up long enough.

Having two IV's ended up being a good thing, because the doctors just switched most of her meds to IV.  Her poor tummy isn't handling much.  By the time she takes all the medicine she has no appetite left for nutrition.  They are giving her TPN tonight to restore some nutrition back into her body.  She received IVIG today.

Her fevers continue to persist.  It's now apparent that we have not discovered the source of her fevers entirely.  However, she seems to be feeling slightly better each day.  Possibly having increased IgG levels, may help the virus pass through quicker.

I talked with an Infectious Disease doctor today.  It was a great discussion.  She wants to run a couple tests.  We will see if anything comes of it.

Thank you to everyone for your prayers.


Dave the nurse made Alice a tent...she stayed in it for hours.

Great nap in the tent.

Dave's second day being Alice's nurse...he wore his best fish pants just for Alice.

                                      Alice took this picture of Dave, she liked the superman shirt.

                                                 Does this picture say it all...long night!

                                                 Matthew's birthday party in Natalie's room.

                                                     Evie was having a ball on Alice's bed.

                                                Having a great time at the Telethon party 

                                     Welcome Home Alice...Thanks Seth and Britta for helping out!

No comments:

Post a Comment