Shockingly we made good time to Children's this morning. Enough time to make a quick run to the PICU to visit our sweet friend Daniel. After emergency brain surgery, he was recovering today. He woke briefly for us to sing a little Sound of Music, he requested the Lonely Goat, I could not remember all the words so we settled on Do-Re-Mi. I do love listening to his sweet voice. He asked me to pray for him so we prayed right then and there. As I was leaving, he asked, "Am I a tough guy?" I replied of course that he was...he is one of the toughest guys I know.
Leaving his room, I could not help but think about our kids, how much their bodies go through, how trusting they are of the whole process and in their own way they tough out many situations that would bring any grown man to his knees in tears. These kids are tough. God made them tough.
We picked up lab forms from the bone clinic because Brayden will be starting the infusion for his bones next Friday. After scheduling it, they requested Brayden get labs, which worked out great because he was already coming downtown for his neurology appointment today. We waited to get labs in case the neurologist wanted to add...no need to do labs multiple times.
Meeting with the
neurologist has always been an easier appointment since she has been with us since Brayden was a newborn. She knows Brayden's seizure history without any explanation from me. We discussed the weight gain, thyroid, sleeping problems, and seizure increases. Brayden's sleeping troubles could be the cause of the increase in seizures. The doctor wants to see the results of his sleep study later this month, thinking Brayden is having trouble with central sleep apnea - meaning his brain is not telling him to breathe as well when he is deep asleep. The weight gain causes problems for his medications. The medication dosage is based upon his weight and seizure control. His dosage needs to catch up with his weight gain. 3 of his 4 seizure medications will be increased over the next couple of weeks, hopefully seeing much better seizure control.
The doctor ordered more labs to add to the bone clinic and GI orders. We gathered the lab orders and headed to the lab area of Children's (oh this section of the hospital needs a makeover). A long wait and finally Brayden's name was called. We never try to jinx or make the tech nervous but we always warn them that his is a hard stick. He had a lot of labs to do, we needed one stick, one good stick to get all the needed blood. The tech put the tourniquet on, Brayden winced to get ready for the pain, he hates the tourniquet. One stick and the tech got it, she got a good one. Possibly one of the best labs we have ever done.
We headed home and even made it back in time for the boys' bus time.