Last Friday was the one year anniversary of David’s spinal fusion and the day the world shut down. It’s hard to put into words what we experienced during the night when he coded and we almost lost him. As fate would have it, he was scheduled for a minor procedure down Santa’s Barbara on Friday. Once the procedure was over, he had bronchial spasms post-Covid mixed with the anesthesia causing his oxygen levels to drop. It was another stressful day with Lisa on lock in at the hospitals and me at home meeting with Matthias’s teachers and getting him back and forth from school, while feeling helpless with David.
These episodes are more common in our lives than they should be. Honestly it’s more stressful and scary than I probably let on. I do so much to be strong for my son and my family, but in these moments I feel so helpless against these forces.
Recognizing the hard realities of David’s genetic syndrome (Cornelia de Lange) and how close we’ve come to losing him, I try to be present with him whenever I can and to be grateful for every day I get with him.
David and Lisa came home from the hospital on Saturday while I was out with a friend. After a strange turn of events lead to his 24 hour stay in the hospital, I was eager to get home to see them and be re-united.
Unfortunately, as I was driving home I saw a couple texts messages coming through and missed a call from Lisa. David’s breathing had turned rapid again and she felt they needed to return to the hospital in Santa Barbara. So, even though they had been home for a respite of a couple hours, they trekked off again before I had a chance to see them.
We FaceTimed—David in his Posey Bed (a gift to parents and kids alike in hospitals!) while I got to talk with him. He was looking at me and really connecting with me over the call. I was happy to see him smiling and happy this morning. It does my heart good.
As a dad, I always want to protect and mentor my kids. It’s important to me to be there and be strong for my boys. With Covid rules around the hospital right now, only one person is allowed in the room, so there’s no way for me to be with David. I feel cut off from him and Lisa and so helpless to do anything for them.
Meanwhile in our divide and conquer strategy, I was there with Matthias—talking with teachers, driving him to school and back and generally trying to hold down the fort of our home and businesses.
5 days later, David and Lisa came home! It had been a long few days of tests, breathing treatments, antibiotics, FaceTime with doctors and worry.
A strange phenomenon happens in hospitals after a couple of days. Somehow the reason you’re there gets lost and a new diagnosis for a new problem emerges. In this case we went from a minor oral procedure to recommending a G-tube in the time David was hospitalized. Knowing eating is one of David’s biggest joys and he has not even one time got pneumonia from aspirating in his food, we chose to skip the G-tube in favor of more information. We’ll check in with his regular doctors when there’s no emergency.
When you have a child with special needs, no one knows your child better than you. Just because someone went to medical school doesn’t mean you have to do what they say—especially in the moment. You can always take a beat, go home and get a second opinion. And, you have to balance preserving life at all costs with living real and full life.
We’re thankful once again for those of you following our family’s journey and for praying for us and for David. Most of all, I’m thankful to God for bringing my son home again and for being together as a family.
I have been following David’s journey for quite some time now..my son’s journey is very similar and I totally can relate to your Rollercoaster of life I will always keep David in my prayers God bless♥️