Mothers Intuition

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."

Thursday, March 15, 2012

Gastrostomy Tube (G-Tube)

Little man now has a G tube....

I'm not sure if it has fully sunk in yet as we are just concentrating on his recovery and healing for now and it's been a long day.   He was 2nd case so didn't get started until around 11am, and was done and back to his room a little after 1pm.   He woke up rough, as he usually does but calms down right away when he sees us.   The surgery earns him a bit more pain meds (IV), so those kept him sleepy for a few hours, which was helpful (for him and us).   Once he woke up- he was in pain and he knew exactly where it was coming from because he kept trying to touch his site.  We were able to get him some IV pain meds and that helped significantly.  After the pain meds, he slept off and on all afternoon- so I mostly snuggled with him.....he is being such a trooper! I wasn't sure how he was going to perceive his new appliance and so far, he's doing well with it; so I pray he continues to be ok with it.  

Our concerns are quickly shifted as he spiked a fever that evening (102, that quickly climbed to 103) - the surgery team came by and they didn't feel it is from his surgical site as they feel that would be fast for an infection to set in and he's not showing any signs of extra swelling or sensitivity around the site.   They said that some people develop fevers from the body stress.   The other possibility is that it is a simple, but ill timed, virus.  His brother has had a cold, and was running a fever on Sunday/Monday so maybe he simply caught it?  

An endoscopy with biopsy's was also completed while he was out for surgery which the initial results showed no new damage in his intestines so now we anxiously await his biopsy results to tell us more about the state of his villi.   

We were surprised to see that he has had virtually no weight gain in the 4 weeks since dismissal.  We will see what the weight tomorrow says because maybe today's was just off from fasting.   All the nurses were commenting on how much taller he looks so maybe he just grew in length instead!? 

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