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."
Wednesday, October 12, 2011
He had stabilized after the episode I was there for, and they finished his vancomyocin antibiotic; we then did a quick site care/dressing change (due once a week) and then I headed home- trading shifts with his daddy. The vanco takes ~1hr.so that finished up and they started the TPN. Within minutes monitors were going off, and he was decompensating quickly- this time worse than the previous one. I'm still fuzzy on the details (and maybe that is better) but they quickly transferred him to the ICU and got him stabilized. Little man’s daddy called me ~11:30pm to let me know he had been transferred and was now stable. They would be getting chest and abd.xray's to be sure nothing else isn't creeping in. He had a few more rough hours, he was stable from the shock episode but his monitors kept going off- he was in pain…from being full of stool! Gave us a little insight into how painful it is for him! They were able to give him a suppository that “took” within minutes and he was able to relax.
We stayed in the PICU for the rest of the day, with close monitoring- he continued to have blood pressure problems and a low grade fever throughout the day but by evening, he was dramatically improved.
Little Man has a double lumen PICC line- which means there are two lines that converge to the catheter that goes into his vein. One of the lines has always been "sticky", we suspect this line is where the infection set hold. Still unclear of how he got the infection but infections are the highest risk with PICC lines. We do feel we caught it early though; as early as we could have. The infectious disease doctors are optimistic that we will be able to preserve the line, that the organism that is infecting it is an easier to treat one and that the antibiotics we've been giving him are working.
Still not sure of the plan from here, but of course that remains on my mind- how long we'll have to wait for the food trials, how much the antibiotics are messing up his system, how long he will be on antibiotics, how long he will be in the hospital, if having an infection means we have to stay in the hospital or can we continue his TPN at home?