FPIES is a journey. A journey in very rough waters - and that is on a good day. Always worrying about crumb ingestion, reactions to foods, trialing new foods, ER plans, specialist appointments, hospital stays, doctors recognizing a little known, but very real, diagnosis (and not blaming you for their nutritional state of labs that are off and growth charts that are mountain ranges), coordinating all this care can be overwhelming. I am always on the look out for ways to make it less overwhelming, to have any help I can get to navigate these rough and murky waters. Navigating the journey requires coordination from all team members. A good captain knows his crew and has the tools to delegate the navigation. We have been lost in these murky waters of FPIES without a proper crew and insufficient tools. It is difficult to be at the helm and in the "belly of the boat" at the same time. And yet, that is where we keep finding ourselves- and stretched too thin. Or, as Little Man's daddy so eloquently put it...."you can't rescue people from a burning building and put the fire out at the same time, (by yourself)"....you need to focus your energy at one task at a time; and then refocus to keep things moving. We are constantly having to shift our focus, when we really want to rescue our son....putting out the fire can should be the doctors part of this illness.
Navigating murky waters with the diagnosis and knowing what next steps to take, with the coordinated care team, and now with food trials. We are on day 5 of plums but Little Man isn't feeling well. Day 1 went well, he liked them and he ate them himself; there were a few small concerning symptoms but nothing that we could pinpoint just yet. We have to keep pressing on until it becomes more clear. Day 2 was a break day (I was at work-unable to monitor possible build symptoms). Day 3 was on track and he did well, again with a few questionable symptoms that we are watching. Day 4 was uneventful...until he got a crumb. We took a day off, he had the all-too-familiar rotten egg (sulfur) smelling "reaction diaper" with a low - grade fever but he slept a good nights sleep (through the night), and no vomiting. Today, offered the plums and he didn't want them. Are we still spiraling from the crumb? Or is it the plums? I managed a swipe along his lips this morning, but was not going to fight him....he has enough negative associations with food already, he doesn't need to be forced to eat (and we've already tried this with terrible results in the past, in our desperation to get him to take/tolerate foods, not knowing or understanding what was really going on inside his little body). He has already shown me he can tolerate textures, and he can feed himself with a spoon. We will let him guide his eating patterns as we have let him guide so much of this journey. I don't think he cares for a "breakfast" meal, he seems to do better with a noon-meal. I put away the bowl and decided to try again later. Within 30min or so, his screaming began....high agitation settled by little- not even a ride in the car to take his brothers to school was going to calm him down! We got home and I gave him some of his compounded ibuprofen and his morning iron dose, and just held him for a while - clearly he isn't feeling good. Once he noticed his daddy home (day off work), he went to him for a comforting snuggle where he fell asleep. Again, another "off" thing- we've been fighting him the past few days to take a nap at naptime and now he falls asleep at 9am in the morning! He slept for almost 3hrs, stayed clingy, fussy and not drinking very well all day. The diaper he had this afternoon was suspicious but still not sure what it, and these symptoms are telling us.
Navigating these murky waters. Sure would be nice to have a map....
No comments:
Post a Comment