Tuesday, April 18, 2006

Some Days Are Tougher Than Others

The past few days I have been writing articles that have been quite positive. I wish that was all there was to write about but unfortunately there are days that are much more difficult to deal with than others.

When we woke this morning we knew that Parker was going to have an I.V. so he could receive more immuno gamma globulins (IGG). These are one of the kinds of immunoglobulins (B-cells) that a normal child produces. Parker's blood is checked each week and yesterday it revealed that his IGG was low. Usually every four to six weeks Parker will have to receive an IGG transfusion to replenish these cells. These cells do provide him with a very humble immune system.

When the I.V. team came this morning to try and set up his I.V. they tried relentlessly to find a vein large enough to use. With each try came another poke. With each poke came another loud cry. After exhausting all of the veins in his feet and hands, it was obvious that a vein in his head would have to be used. Something my wife and I were not looking forward to but knew would have to occur eventually.

It was not until the early afternoon that two exceptional men came to see Parker from the neonate transport team. They spent over 45 minutes with our son, comforting him as if he was their own. Normally, when a vein in the head is used for an I.V. a portion of the hair must be shaved to be able to make room for the needle. My wife and I were so happy that these two extraordinary men were able to insert the I.V. into his vein without having to shave Parker's beautiful hair. We would just have to hold him until the transfusion was complete six and a half hours later.

Today was a very tough day for my wife. In addition, many of the people who read this web log may have also had a difficult day. Unfortunately, there are things that happen each day that put our pain into perspective. When my wife and I first found out that Parker had a form of SCID we were devastated. How could this have happened to us. At the same time that we were finding out about ADA deficiency there was another family that had been going through the same thing at the hospital. It was not the same form of SCID that Parker had but the ramifications of the disease was the same. Their child had no immune system.

The couple had been at the hospital for over 100 days and their child had just had a successful bone marrow transplant. We were so thankful that this couple had decided to take the time to see us. They spent over an hour with us as we sat in a conference room as they tried to explain what it was like to have a child with a Severe Combined Immunodeficiency. For the past six weeks we have been in regular contact with them at the hospital. Whenever we see either of them we ask how their little boy is doing. See, their son had gone through quite a bit prior to his BMT and as a result has been in critical care for the duration of our stay on 8B. Last night, at eight months of age, they lost their precious little boy.

My heart goes out to this family. I cannot begin to imagine how they feel. The only reason I mention this story is because so many families go through similar situations at children's hospitals around the world. It’s when things like this happen that people begin to put things into perspective. Like a poke, an argument with a friend, or a tough day at work.

8 comments:

Allyson said...

HUGE hugs to all of you today-as always-you are in our thoughts and we are thrilled to hear that you awesome hair will remain on that beautiful head! Bruce, Allyson and Beck

Stacia said...

Hi Hi Parker!!! It sounds to me like you were a very VERY brave little boy today. :) You Tell your mommy and daddy they are very very brave too, ok!!!

I'm thinking about you guys every single day.

Love Stacy xoxoxoxoxoxoxoxoxox

coolauntiekatie said...

Hiya Peanutbutter!

When this day is through, and all the craziness of the "I.V" is over, hopefully you'll have a peaceful sleep, and tomorrow will be a brand new day. Stay strong little one! Even though you can't speak to us, we feel strength and are so proud of your daily accomplishments. I know it's a tall order, but if you can give your Mommy, Daddy and Nana a few big smiles, I know they'll appreciate it.

Love ya lots and lots,
Auntie Kate xo

FrancineElizabeth said...

Good Afternoon Parker,

You are so lucky to have such loving and patient parents, who take wonderful care of you. What you went through yesterday sounds awful and I am so happy to hear that it is over. Your mommy must have sent extra love your way!
Take care and know we love you!!
Thinking of you and your momma and dadda all of the time!
Your Auntie Franni

Elizabeth said...

Hey little Parker,

I am glad that you were such a brave boy today - you showed Mommy and Daddy how to be brave, too. They care about you so much.

Keep being brave - you're growing every day in your strength!

Love Elizabeth

Uncle Mikey said...

Hello sweet Parky,
So sorry for all you went through, but you still remain the bravest little boy ever. Your parents are amazing too and I know with their strength and with yours, you'll just continue getter better and healthier. My heart goes out to the little boy as well.
Hang in their big guy! We love you lots and we're always thinking of you and your parents.
Love always,
Auntie Christini and Uncle Mikey

nonna said...

Hey Parker,

People often say that all these things that keep happening to you are making you stronger, well you must be Superboy by now! I can only imagine what your Mommy went through yesterday. So Tracy today I give you all my strength so that you can go on being strong for Parker.

Stay strong, you handsome boy!

love you tons

Nonna & Nonno

Natalie said...

Parker Poo,

I am so sorry little Monkey to read about your difficult day...your family has been so strong through all of your struggles. You are in my prayers little one and I hope that today was brighter than yesterday.

We love you very much Parker and your Mommy and Daddy too.

Love,
Auntie Natalie & Uncle David xoxo