Long Day at Children's
After 9 hours at Children’s Hospital today with Caleb, I walked through the door and told Dan I felt good. I could barely see straight and was exhausted beyond belief, but I was happy about how the day went. That says a lot as my expectations are quite high as it relates to Caleb’s medical care.
We left our house at 6 am for an MRI using the best machine on the market (3T) in addition to the imaging of the blood flow. And while he was sedated they were able to do all of the ordered blood work from Hematology. He quickly picked an ABC toy from the toy box and situated himself on the bed, not really knowing what he had coming.
He was happy until it was time to take his jammies off and get the IV set. He managed through with the help of distraction from the wonderful nurses and his mommy holding him reminding him how proud of him I am. We were finally able to make him happy again with some bubble blowing.
I was able to hold him while they administered the sedation medicine. The Anesthesiologist said he doesn’t always allow that as they get lethargic and heavy within seconds, but that I looked strong enough to handle it : ) I took that as my compliment for the day. And true to words, he was out within seconds so I laid him on the MRI table, Caleb let out a big yawn and a sigh to which we all giggled, I left the room for the experts to do the job. They were organized and kind and compassionate. Some confusion was sorted out between the Radiology technician and the Hematologist even before we arrived, now that is care coordination. They kept me updated throughout the long procedure (2+ hours), which was very appreciated.
I think we get extra special attention because Caleb is just so dang cute. His blonde hair and blue eyes are head turning, but his high-pitched little voice is heart melting. I realize I am biased.
Caleb attempted to eat a popsicle as he woke up from his sedation, which was quite humorous to all of us at his bedside.
From here we were off to the play area known as The Child Life Zone, of which I am now a new supporter. They only have 12 in the country and they are areas of play within hospitals that bring “healing that medicine can’t buy”, started by Garth Brooks and Troy Aikman. It made our long day at the hospital not just tolerable, but enjoyable. https://teammatesforkids.com
Radiology and Neurology were able to meet to discuss the results of the MRI in order for us to have a same day appointment with Neurology. The diagnosis is the same (Mild Cerebral Palsy), but the Neurologist was comfortable with the scan and he was easily able to show these white matter areas (brain damage). We had real conversations about how the damage in the left part of his brain is “static”, but causing issues on the right side of the body. But his words came out positive. His premise is to praise the intellect and discount the physical limitations, although recognizing it is still hard on the parents.
We still have unknowns as it relates to how the limitations may need to be addressed in the future. But for now we head to Development Peds and Physical Therapy and say “See You Never” to Neurology. To me, it feels like this is the turning point to where we feel at peace with his diagnosis, but start to be cognizant of Caleb’s feelings as he grows older and realizes he is a little different than his peers. This won’t be easy, but it could be worse, way worse in fact, and I am feeling good about this medical team I have built for him.
We ended the day with a well-deserved, large coffee for me and even more-deserved and larger cookie for Caleb.