By Hank Osborne from Daddy Life
“Fear! It is part of the overall human experience and not simply a childhood phenomenon. Some childhood fears might appear irrational, even silly, to parents because they do not arise from any real external danger, but they are very real to the child and should be respected as such,” Ezzo, Gary, and Robert Bucknam, M.D.. On Becoming Preschoolwise.
Riley is our oldest and has grown out of a couple of these apparent irrational fears. He is still working on some others. In a recent episode of the Home School Support Network podcast he shared two of his fears that are the same as a character in the book he was reviewing for the podcast. One of the fears is thunderstorms. More specifically, he does not like the loud noise of the thunder. This one is difficult to deal with so we try to be proactive and let him stay up until a storm passes or we go ahead and get him when we know a storm is brewing in the middle of the night.
Caden shares Riley’s fear of thunder. The thunderstorms are a cakewalk to deal with compared to some of Caden’s other fears. To help you better understand why these other fears can be difficult to deal with, it would probably be helpful for me to tell you a little about Caden. He is now 7 ½ years old. He was born with a genetic deletion called 22q11.2 (DiGeorge Syndrome). This came with a long list of complex medical challenges that we still battle. Caden has averaged about 30 nights per year in the hospital since birth due to having numerous major surgeries and illnesses. His surgeries to date include:
5 – Open heart surgeries for (IAA Type B, VSD, ASD, Ross Procedure, Pacemaker, oversized PDA, and aortic stenosis)
1 – Heart catheter (went into cardiac arrest during this one requiring CPR)
4 – Back surgeries to place and adjust VEPTR rods for scoliosis
1 – Stomach surgery for a Nissen Fundoplication and G-tube placement
1 – Neck surgery for a Cricopharyngeal Myotomy to try to help him swallow
As for illnesses, he was diagnosed with six distinct cases of pneumonia in 2011 and two cases in 2012. There is also a list of outpatient surgeries too long to list here.
I share these details to set the stage for a situation where we were forced to help Caden get past some of his irrational fears in rapid fashion. Caden’s fear manifested with him becoming hysterical at even the sight of a blood pressure cuff. And this all began one month before an open-heart surgery. You simply can’t go through open-heart surgery and just avoid the blood pressure cuffs during the recovery process. On top of that, every single clinic who sees Caden, no matter what their specialty, wants a blood pressure and pulse reading. We knew from our friends the Ezzos that “children often overcome their fears once they become acquainted with the object of fear.” We had to go into high gear to get Caden acquainted with the blood pressure cuff before the surgery.
The cardiologist gave us one of the velcro blood pressure cuffs exactly like the ones they would use on Caden during recovery in the ICU. Sherry began by leaving the cuff on the floor in the same room where Caden played for the first few days. She then had Caden sit in her lap (hands folded with some crying) with the cuff being a couple of feet away. She only did this a once or twice per day for just a few minutes each time. She would make sure it was closer to him for the next few days until she got to a point where Caden would allow for the cuff to touch his leg. (Not wrap around his leg!) We were well over a week into the process by the time we got to this point. As the days progressed, we worked to get him to allow it to touch his arm and eventually we got him to agree to put it on his favorite stuffed animal (a skunk). A couple of weeks in we finally got him to allow us to put it around his arm. Then we worked on blowing a little bit of air into the hoses to add a slight amount of pressure to his arm. By the time his surgery came around we had achieved our goal! Caden allowed the nurse to take his blood pressure during pre-op with no objections.
Caden did great during this surgery. He was discharged after only four nights in the hospital following a full open chest cavity surgery that required removal and replacement of both his pulmonary artery valve and his aortic valve. He is fast approaching his next valve replacement surgery. The photo above was taken at home just after lunch on a Friday four days after open-heart surgery…without a fear in the world.