Wednesday afternoon was nothing less than chaos and a stomach full of shot nerves. I went to work with a broken heart and so much guilt, I just knew it was one of those days when I needed to be home with my little girl.. she needed me home with her. If I couldn't be home, at least I will do everything I could around my work to make sure I was getting all the answers and help she needs.
The sitter texted me sometime before lunch and said her temperature was pretty low. I was initially grateful that it wasn't high until I read it was almost 96 degrees. I sat at my desk kinda puzzled, scratching my head and thinking "well what do I do with this? What does that mean? Is that ok?" I decided I would call the doctor to give him an update and at least ask if this temperature change was ok. He told me to take her to the pediatrician, I called our ped. and they said to come in right away. Without washing my coffee cup or shutting down my computer, I collected my keys and headed for the door to get my baby.
When we arrived at the pediatricians office, Annabelle's temperature was 95.1 rectally. We wrapped her up and the doctor and I began talking while we waited for the strep test to come back (negative). What my pediatrician told me next, made my stomach drop.
She started asking about our families history of blood disorders. Endocrin Diseases. Etc etc.
See, while Annabelle's weight has always been watched closely, we've been overlooking her height on the growth scale. Annabelle quickly escalated from preemie size towards the 90th percentile for height and maintained her growth.. until the last several months. Not only has she slowed from continuing on her curve, she's been dropping.. and very fast.
I didn't know a temperature of 95 degrees is equally as dangerous as 104 degrees, and the 9degree difference in a matter of a few hours isn't ok at all. Her body is clearly trying to do something and solve what's going on, but the autoimmune side of EoE is preventing her from safely being able to do so.
Chronic coughing and choking each night.. with all the medications she is on is also a sign/piece of this puzzle. It becoming increasingly more severe and now associated with terrible pain shouldn't have gone overlooked for so long. My bad. I explained, 'what do I do though? Rush her to a doctor and say "my kid coughs at night and has weird fevers?" No one will even blink twice to giving her help!' Our pediatrician assured me though, that all these things that have been adding up are all red flags and warrants validation that something is definitely wrong with Annabelle. She suggested seeing an endocrinologist.
I agreed that it seems fitting and agreed to follow thru with an appt as soon as she could schedule us. Before I left, I asked what to do tonight if all this begins again. I cannot, repeat CANNOT watch my daughter struggle and suffer in pain all night like she has the last couple. And if the fevers return as intense as they have been, I don't feel safe riding that out at home. I've been watching my daughter spiral downhill for weeks and the past is promising tonight will not be an easy break. I just knew we were in for another long, tough night. Belles pediatrician was extremely clear that the second she begins these episodes that she needs to head to the hospital.
While driving to get Mady, I started kicking myself. I'm so mad I've let this all go on for so long, I'm mad I've allowed my baby to suffer night after night because I didn't think her symptoms were justified or anyone would believe me. I carry so much guilt when it comes to Annabelle's health. I never feel like I am doing enough to give her relief, a painfree life, an opportunity to smile everyday and live like a 21mo should. If I don't fight for the best quality of life for her, who will? I promise her with every salty kiss over her teary cheeks that I won't stop fighting. No little girls should ever live like this. No little boys should have to live this life. And no parent should ever EVER have to fight the healthcare system and carry guilt this heavy for their babies. Please Lord, we need prayers answered soon.
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