Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Monday, December 31, 2012
Acidic Bile Vomit
The other day, I came across this picture....from January, a year ago. I had washed it 2-3 times by the time I took this picture....and then threw it away. The pillow looked dirty when it was clean. I took the picture before I threw it away. Why take the picture? Because I am still in disbelief of how this vomit stains EVERYTHING! Before the FPIES diagnosis, or knowledge of anything FPIES- I threw away shirts with these same stains on them- both Little Man's and mine. I would throw them in the wash IMMEDIATELY -we always had a full load by the time the vomiting was done, all the towels it took to soak it up, the bed sheets, the clothes we were wearing, the washcloths used to clean up...and they would always stain. The stains remain on the mattresses, the pillow themselves, as well as blankets and sheets we are not throwing away, and the some spots on our carpet....yellow vivid stains. A reminder when I change sheets of these long nights....
Bile vomit is very, very acidic. It stains everything. This pillow....this night...the vomit was scary. It made me think of all the times he was alone in his crib, not even waking up to vomit (the allergist who diagnosed him said this was indicative of shock- where they don't even...can't even, wake up to vomit). This night, the story this pillow tells....a night in January when little man was (unknowingly) reacting to sunflower lecithin that had recently been added to his previously safe Living Harvest Tempt Unflavored/Unsweetened Hemp milk. It was 3 nights of green vomit around midnight before we figured out it was the hemp milk (that was previously safe when it did not contain sunflower lecithin). This night, this last night before we discovered it was the sunflower lecithin I had just laid my head down on the pillow next to him (hubby or I took turns sleeping with him while he was on TPN- IV nutrition, as his IV line was a central line, we didn't want him twisting and turning in the night and getting tangled in his lines). I had just laid my head down and I heard this gushing sound...like the sound of the toilet overflowing. I jumped and looked towards the bathroom- expecting to see one of my other boys running out of the bathroom- trying to find help for an overflowing toilet. Except as I sat up, I realized it was Little Man because he the gushing happened again- he wasn't even awake, barely lifting his head off the pillow to vomit this green substance. I scooped him up and had him in the bathroom a few seconds later (right across the hall from his room) to finish emptying the contents of his stomach in the sink. I just can't forget that sound....the gushing of vomit, and looking over at him to see his eyes not even open and more vomiting coming....FPIES sucks.
Why share this? Why share this scary story? Because this is the reality of an FPIES child, of an FPIES family. The amount of vomiting that little man has experienced is not normal, not ok, not healthy. The amount of vomit we have had to clean up, his brothers have had to watch him experience, we have had to help him through....all more than one child should have to endure for sure. But all the stark reality of these children and families. Maybe this will change one day, maybe more will be known about the mechanisms of this allergic response and future generations will not have to go through so much....it begins with this, sharing our stories (yes, even the 'scary' ones), it starts with awareness of what FPIES is....