White Coats

Why is there so much sitting, waiting and seeing with a laryngeal cleft? It is because aside from a weekly swallow study, chest xray or visit to the doctor from a lung listen which are all completely irrational, there is no way to tell if a child is aspirating other than when pneumonia arrives. Sure, there are the tell tale signs while the drinking process is happening: coughing, gurgling, redness around the eyes, choking. If your child is a silent aspirator, like Sloane can be, than many times those signs do not appear while drinking. So you wait and pray every night that each sip is traveling right into Sloane's belly where it belongs, not slipping thru her cleft into her lungs. Since Novemeber when we started introducing thickened liquids again, we have been taking baby steps so Sloane stays safe. (post: Slow & Steady)


Because I know weekly swallow studies, chest x-rays and doctor visits for a lung listen aren't exactly ideal for Sloane, what do I do? I rely on my ped to keep me sane. We talk A LOT!! HA When I was interviewing peds, I saw 3 different ones who all came recommended by friends. I heard that a ped didn't matter because they didn't do much from a friend with a child without any medical needs. I am pretty sure my ped has earned her medical payments!!! It wasn't until I met my ped that I knew I found a good fit. Days, months and a year later, I know she is the best fit for our family. Once we were home from the NICU, my ped shared with me that she had another child with a laryngeal cleft 4 years earlier. The odds of that are crazy!!! Sad news for the other little girl's family but good news for us. My ped had traveled a journey like this before...she could guide us. To which she has!! Aside from that, my ped understands how scarred we are from our experiences. She accepts all of my red alert phone calls personally (there have been many). And she checks on Sloane's general health just because she knows I need her as sounding board. As my hubby says, "she connects the dots, she gets it." 


Sloane does not have the same admiration for her ped that I do. She has a HUGE white coat fear (I believe that is the cute  name they give it). I would say she is violent towards our ped and any other medical personnel that comes near her. At our last sick visit, it took the 3 of us to hold Sloane still. Like her mother and father, Sloane is scarred. She has had it with doctors, nurses, tests, x-rays, needles, and being touched. Like her ped, she connects the dots, she gets it.