Maybe he was thinking back to how life was when he was born. For those of you who don’t know our Caleb was born at 29 weeks 5 Days gestation and spent the first seven weeks of his life fighting to survive. Caleb was 2 pounds at his lowest, had multiple holes in his heart, what we now know was brain injuries, and struggled the most with breathing. Caleb has had biological siblings born in the same traumatic way that caused his premature birth that did not survive it. Caleb fights hard and always has.
Thankfully, we live less than ten minutes from the third best Children’s Hospital in the country. I couldn’t tell you much about our drive there other than that I was praying the entire time and I think I obeyed all the traffic laws.
The hospital has valet parking and when I explained why we were there the nurses took us quickly back to a room. Then it was time to give a room full of nurses a crash course in Caleb.
Caleb has Autism an exam is going to be a challenge and will take a few of us to restrain him. Caleb has Asthma. Caleb also has Chronic Lung Disease from being a preemie. Caleb also has type 1A of Charcot Marie Tooth and that also can impact his lungs. Oh yeah, no, he cannot tell you if something hurts- he is nonverbal.
After an adventure in Triage the staff ushered back to a room and they brought in this awesome device called an interactive hurricane machine that helped soothe Caleb as much as he could be in that setting, while struggling to breathe. Mama also brought his tablet so we had everything going for us that we could.
Listening to Caleb’s lungs took three to four of us and he screamed the entire time. So most of his exam involved him walking around shirtless so we could count his breaths and watch his retractions with each breath.
As always happens at the ER, I had to reiterate the story of Caleb to everyone who came in the room. The PA sighed and said “Man, the poor guy has a lot working against him when it comes to breathing”. And I started sobbing. Only for a few moments because I needed to have it together and help our boy but yes, yes the cards are stacked against our boy when it comes to most things.
After we wrestled, and fought, and restrained Caleb enough to get him to take eight puffs on his inhaler, and hide steroids in his sippy cup the doctor came back in the room. He said that because Caleb has all those cards stacked against him when it comes to breathing what should have been a mild asthma flare from a cold became dangerous for him. They called in more steroids, told me to watch him close but to take him home so he could try to settle.
On the way home something hit me like a truck. I still really struggle with not having a village or a tribe here in Grand Rapids, but this is why we left our tribe to move here. This was relatively small potatoes compared to what it could be for Caleb and I was able to have him in front of world class Doctors in roughly 15 minutes from his retractions at home. When/if it’s more than a “small” flare that short distance could make a life changing difference. For the millionth time I cried.
I got our boy home and he was done with me because I helped restrain him so he was ready for Daddy to take him to bed. He eventually settled and slept, while I paced the house and listened for wheezing.
Today Caleb woke up a four year old. Every time I look at him today I am blown away by the fight of this boy. He never stops fighting to survive and fighting to live a wonderful life. He is such a superhero, and he amazes me with each breath.
Happy Birthday Baby.