We went to Rochester Friday the 14th of September for a check-up with Andrew's Hematologist and Nephrologist at the Mayo Clinic. When he had his nosebleeds a few weeks ago I thought I better set up appointments. It is so hard to put into words all the thoughts/feelings/emotions that happen when we go there. But I'll try.
The main thing that makes it so hard to reconcile feelings with facts is that Andrew is normal. He is healthy, active, right on track for his age, happy. Except he hides this secret in his blood. He's normal but he's not. I look at kids in the Heme/Onc area and think "we don't belong here"... but then in the next breath it is so glaringly obvious that we do. He only has 12,000 platelets per microliter of blood. 12,000! In a "healthy" individual this platelet count is a fast ticket to a transfusion.... doctors freaking out, bleeding out, etc...
And then we go to his appointments and he just rocks them! I try not to use the word proud... because I believe pride is not a good trait, but I was flat out PROUD of my boy! He fussed a little when they weighed him and cried when they stuck him for blood. Charmed the pants off the nephrologist to the point that he really didn't have anything to say except "see you next year"!
He did great with the hematologist and a medical resident that was rotating through the hematology clinic. He got a little mad when they looked up his nose.... but it was nothing that Dad's i-phone couldn't fix! Yay distractions!
The hematology appointment was a little harder on mom and dad. The doctor seemed a little put-out that we didn't take Andrew to the ER when he was having nosebleeds. We tried to explain to her where we live (rural) and what we knew our boy DIDN'T need (nasal packing) and that we KNEW that's what they would do to him. So we didn't take him. It was as if all she could think of was where she lived and practiced medicine.... duh, it's the best in the world! Of course we would take him to the ER if we lived in Rochester. He wouldn't get inflatable packing or nasal tampons in Rochester because they would understand him.... or at least be able to make contact with his doctor for direction. Ugh. We finally agreed that what Andrew needed was a plan in place for nosebleeds and Dr. Khan would contact Dr. Suriar (local doc). Well she did and you know what the plan is? inflatable packing. AAAARRRGGGHHH!
So we have decided to try to take matters into our own hands based on Aaron's experience with nosebleeds as a youngster. We are going to see an ENT physician in Fort Dodge early in October. This is in the hopes that he will understand and help us put a plan in place for nosebleeds that does NOT involve packing. Rather a plan for some topical thrombin or maybe a dissolvable packing (like Mayo has). We'll keep you posted on how that appointment goes.
My overall feeling is that it is so hard to be an advocate for our son when pretty much no-one except Aaron understands this condition. I feel like we need to argue with, defend ourselves, and educate the medical professionals all in a few breaths.... All the while knowing our boy is normal, but not. He is medically fragile, but not. He can do everything, but he shouldn't. He can fall down, but what if?
Soo at the end of the day Andrew had a hearing screening since hearing loss can be a part of Epstein's Syndrome. They were running about an hour behind... but he was so good to wait! These pictures are in the waiting area.
What a sweet boy to be that happy after a long day of appointments. And boy was this one worth the wait. They were SO good to Andrew! He had fun and we found out his hearing is great! They play this cute game where they put a plastic frog on the end of a plastic shovel and when Andrew hears the "beep" he smacks the shovel and sends the frog flying. So great! He was happy and so were we.
After all of this was over we went home and picked up Gabe at Hudsen's house where he had a GREAT time. We so appreciate them taking care of Gabe while we took care of Andrew.!
Andrew will likely go back to Rochester in November with Aaron for another check-up with the hematologist and possibly ENT for discussion of the nosebleed plan.
As always we will keep you posted on our little man!