Thursday, March 30, 2006

How Does this Kid Do it?

Well, Parker has been off oxygen for some time now. The nurses have repeatedly done spot checks to make sure that his oxygen saturations are above 93%, and they have been. Parker has also been having respitory rates in the normal range of 35-50 breaths/minute. This is down dramatically from the 60-90 breaths he was doing when he was originally diagnosed with PAP (see March 21st article). I don't know how this kid did it but it seems as if he has won his first battle by beating PAP.

The treatment for PAP is a medication called GM-CSF that I had talked about in a previous article. The doctors have decided that they will not be giving Parker the medication when it arrives from the States next week but hold the medication as it has a three year shelf life.

Mommy and daddy are very proud of their little boy for doing this. Although we are not sure exactly why, it could have cleared itself up for a number of reasons. The BAL that was performed with the lung biopsy probably cleaned his lungs somewhat, the IVIG that he was receiving could have played a role, the fact that he is in reverse isolation and free of germs didn't hurt, and finally the fact that he is eating like a normal baby.

Today, Parker had a calorimetry test done. This is a machine that is attached to a box that goes over Parker's head and measures the CO2 and O2 exchange. The purpose of the test is to check his metabolic rate so they can modify his calories appropriately to compensate for his increased metabolism. The test concluded that he burns calories at a rate 1.3 times greater than a normal infant. From my research, I have found that the formula that Parker was on prior to be diagnosed with ADA had 2800 KJ/L. This is typical Enfamil formula. Since being diagnosed, the dietitican has changed his formula to Nestle Quick Start, which he likes better, and increased the concentration of the formula to 3800 KJ/L. A simple calculation will show that this is 1.35 times the normal number of calories in an Enfamil formula. This is more than sufficient to cover his higher metabolic rate caused the ADA deficiency.

To see how this affected Parker, he was born at the 25th percentile for his weight, when we came to Sick Kid's prior to moving to isolation, Parker had already dropped to the 10th percentile. When he did move to isolation he had fallen further to the 3rd percentile for infants at his age. The goal from there on in was to have him gain weight at this percentile and not let him dip any further. As a result of the concentrated formula and Parker's new found appetite, Parker has gone from being at the 3rd percentile to the 4th percentile for his weight. Remember, a small step forward is still a step forward.


nonna said...

Hi Parker,
this is your Nonno and Nonna checking you out!Your a very good and handsome boy and we are very very proud of you and your mommy and daddy.We know you are going to keep up the good work because you are such a strong boy.Luv you bunches and bunches.

Here`s Nonna!

Morning Parker

We'll show your doctors about gaining weight. You come from a long line of eaters, we know how to have a good time and when you get your teeth you can really start to chow down with Nonno's Pizza.
Have a great day, see you tomorrow.

love you tons


Funny Face said...

Good Morning Parker!

We are so thrilled to hear you are gaining weight and eating well.
We are glad you had a good day 'cause every good day is one day sooner to going home and everyone getting to hold you and play with you.

Keep it up little guy!

Love Laura, Craig and Elizabeth

P.S. Elizabeth can hardly wait till you come home so she can play with you!

Natalie said...

Good Morning Parker Poo! Did you know that I always start my morning by looking at your adorable little face!? I am so happy that you are moving up the weight scale! Yippee! Have a wonderful day my little man!

Lots & Lots of Love,
Auntie Natalie xoxox

Stacia said...

Good Morning Parker!!! How handsome you look today!!! I wish I could squeeze you :) You put big smiles on my face every morning when I check in to see how you are doing...It sound like you are making some fantastic progress and I am sure that this is only the beginning in the ways you are going to amaze all of us!!! You have a wonderful day today Parker and please tell your mommy and daddy hi from me!!

Bye bye baby xoxox

nana said...

Hello my little man:

Just want to tell you how much I enjoyed being with you the last few days. Have I mentioned how much I love you and how you are the first in my thoughts every morning and the very last every night.

I know you are getting stronger day by day and it won't be long until we are all together again having a great time just the way it was intended to be.

I love you.

Nana xoxoo

coolauntiekatie said...

Hiya Peanut!

Did you ever see the movie "What about Bob"?? ............. oh. I guess not. Well it's pretty funny. And the important message of that film is "BABY STEPS"!! We're proud of any challenge you overcome.......big or small!

We love ya lots and lots!
Auntie Kate xoxoxox

Elizabeth said...

How DO you do it, Parker? Wait...I know - you're a fighter and you are such a strong boy! Already you have had to endure more than most people see in their whole lives, and that will make you even stronger. Keep on fighting, I'm so proud ofyour accomplishments!

Love Elizabeth