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, August 10, 2011
A rash + progressive weakness?
Monday was the doctor appt, with the labs to rule out viral infectious sources, tests came back on Tuesday clear...and Tuesday was a busy day and I wanted to observe him more....I was really noticing his fatigue, and started to realize he was weak, he joined the boys outside Tuesday morning while I was hanging out laundry and I watched him walk- tenderly- across the lawn...he was walking slowly- as if he had to think about each step; but he was determined to play with his brothers, He tired easily. I noticed when I put him down, he wasn't wanting to (or able to?) bear weight on his legs. My instinct is clawing at me....but I can't pinpoint what is going on.
I am so challenged by the continued challenges. NOT by the challenge itself, but by the constant place I am in...it feels like I'm being negative or dramatic. I am not a half-glass empty person, and do not want to send half-glass empty messages- with doctors, with family, with friends. I have no control over this, none. The more I want to, the more I don't. I hear God's message- I just struggle with it. Humility. I do not know what is going on with him, I have to ask for help. I have to plead for help from doctors who may not be able to, or want to help. Humility. I share our experiences to help share our story, to bring a voice to the atypical FPIES so many kids also share, to support and be supported in a new family connected through an isolating diagnosis.
I struggle...do I call the doctors? What symptom am I telling them? Am I just seeing this or is this 'just' his normal fatigue? What am I asking for? What do I need?
Today, we started out the day much in the usual ways, and I notice changing Sam's diaper that his legs seem weak, progressively from yesterday. When he finished his bottle, and got down to play- he clung to the bed, and then he grabbed for a chair, and then walked along the wall before he ventured out on his own- wobbly and shaky. This is getting really concerning.
I called and the nurses agreed he needed to be seen. After making the appt for later in the afternoon, I discuss his symptoms with a few more moms, and share the video of his walking, and discuss further with Little Man's dad (who is at work). We decide to head to the ER, not really sure what to expect. A nurse and Resident MD come in to do their assessment and vitals at the same time and then the Pediatrician on call comes in to do hers. She is very pleasant and she confirms my concern, not in a scary way but in a reassuring way- that my instincts to bring him in are on..."too many symptoms and can't pinpoint it except to say, something is wrong". She orders lab work, an IV placement and a some further tests (lumbar puncture).
Lab work, sure. IV placement, good. Lumbar Puncture? Ok, now I am getting really scared and I'm here alone with our 4 boys. I called Little man's daddy with the update, he knows he needs to ask to leave work and I confirm that by saying I don't think I can do a lumbar puncture with him alone, with the other boys here. The IV placement was difficult enough...the boys were in the room- the team had gotten there and was moving so fast, I wasn't thinking about having them step out, and I had a movie on for them to watch and at first they didn't notice the IV team coming in and then little man started screaming and W was squirming and climbing the walls and doing everything he could to not cry or reach out to his littlest brother. So hard to watch him go through this. I, struggling to hold back my own tears that I am always able to hold back, give him an assignment of finding his brothers some stickers- right outside the room. The other 2 boys now notice the commotion- realizing their brother isn't just normal fussing. J is frozen and crying...I ask him to leave, he can't move. With the help of one of the nurses, Thomas leaves to go get stickers- basically still oblivious to what is happening with Sam (thank goodness because Sam is sitting on my lap- my full attention needed to stay on him). Yeah, an IV placement- they can't be anywhere near the room for the lumbar puncture!
We get the IV placed but it is clear we needed our tag team. Jeremy's co-workers are understanding of his need to leave and he is soon with us at the ER, arriving just in time for the LP....his turn to be with Little Man and this time I got the boys out before any commotion began....we're going to get a snack. They gave Little man some sedation and the LP went perfectly, and is over shortly after we get back from getting the cafeteria. I have never seen him so loopy! The sedation drug is one for pain and sedating so he doesn't move during the procedure. We have to wait until he is stable and then we move to a room upstairs. He needs to be admitted for further observation and tests.