Friday, January 8, 2010

How Cystic Fibrosis Entered this Household

Well, where to about 2004???
 Ethan Sky was born in February. He was about 6 pounds 9 ounces and was just the absolute joy of our life. The only problems we had, was that he slept horribly, cried through the night like his stomach hurt and would only sleep on our chest.
He was good at breastfeeding, but he would only drink a little and then start crying and then be hungry very soon after...and he was not gaining weight.
In early June, we at first thought that he was starting to gain weight better, but as the days went on, we noticed that he was actually swollen and not simply chubby.
We took him to the doctor, who wanted to take some blood and see if he could find the problem. After a number of sticks by the nurse and going to an outpatient lab and having no luck of drawing any blood, we were sent to the emergency room.
The emergency room is simply a blur. Joshua was at work and couldn't get off, my mom got to the hospital not long after we got there. I remember numerous nurses, a trip to get x-rays and ending up being admitted to the hospital.
 At the end of this first day of hell on earth, Ethan had been poked everywhere you can think of to try to get blood, his ankle, his neck, his wrist and eventually his head. They got a good line in his head and so they set up an IV there.
The doctors, for the most part, made me quit nursing Ethan.  They started him on a formula called Alimentum, which is basically completely broken down food and the easiest thing for the body to digest.
They collected all of his stools for 3 days (wait a couple paragraphs and I will explain that more).
They daily took him away and drew as much blood as they could to test for a gamut of things (they refused to use the IV in his head as that was for emergencies.)
The doctors did perform a sweat test, which tests the amount of salt in the sweat and gives a good indication of CF being present. The woman who did the test said that she couldn't get a lot of sweat, so that was a pretty clear indication of Ethan being negative for CF. They ended up ruling out CF at that point (we'll get back to that soon too.)
At the end of a week being in the hospital and Ethan gaining a pretty good amount of weight, he was released with the diagnosis of Protein Losing Enteropathy. Basically, they said that Ethan's body could not handle the protein in my breast milk and the result was protein oozing out of his blood vessels and demonstrating with edema (swelling).
They found he had no allergies to food and no evidence of Crohn's or other such things.
We were sent home (bruised and beaten) with the notion that Ethan would outgrow this condition and told to see a gastroenterologist in a few weeks to see how everything was going.
We visited the GI Doc and told her that Ethan was hungry all the time and his poops just didn't seem normal. Also, his weight was not increasing as we had expected. The doc did not seem concerned and just told us to add more formula to his bottles, to increase his calories.
This went on for about 7 months.
In December 2004, the GI Doc said we needed to do another sweat test, just to rule out CF. The first CF test came up positive and it completely blew us away. They set up a second test, just for confirmation. We prayed like crazy for a huge mistake to have been made. At 10 months old, Ethan Sky was officially diagnosed with Cystic Fibrosis.
An appointment was set up to meet with the CF doctors.
We were told that the woman that did Ethan's initial sweat test in the hospital was fired, due to giving families the kind of misinformation that she gave us, about little sweat meaning a child is negative for CF.
 We also found out that the results for Ethan's lovely little stool sample, while in the hospital, were never received. Once the CF doctors checked into that, they said that the amount of malnutrition seen in his stool at that time would have definitely pointed to CF.
Maybe all of this information getting a little tangled up was God just giving us a little more time in living a life with a lot less stress:)

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