Powerless

This post was going to be the final installment in our vacation series. Instead, I'm going to vent some frustration.

Mathison and I returned about an hour ago from a 10-hour jaunt into Salt Lake City for a doctor's appointment at Primary Children's Hospital. It appears that Mathison is beginning to show some early symptoms of the same immunodeficiency that affected Jefferson. The immunologist decided that certain tests were needed in order to get a clearer picture of what's going on with Mathison and suggested we get them done all at once this afternoon to spare us another 2 hour drive into SLC.

So began our 3 hour nightmare. The first test the doctor ordered was a sweat chloride test to rule out cystic fibrosis. Mathison was hooked up to 4 "jumper cables" - 2 tightly secured to each arm - and given electrical pulses for 5 minutes. The cables were so tight that his hands were turning purple, his arms had to be kept straight out in front of him, and the current stung horribly as it went in. Needless to say, Mathison was screaming the entire time - and nothing I did could calm him. When the time had finally come to turn off the electricity, both arms had to be wrapped from wrist to mid-bicep with gauze, then plastic wrap, and finally an elastic bandage. These layers prevented him from bending his arms, and he ended up crying for several minutes in frustration.

At this point, we had 45 minutes before they needed to take off the wraps, so we headed over to radiology to get a CAT scan of Mathison's sinuses. The patient has to hold completely still during a CAT scan in order for it to effective; I had wondered how they were planning to do this with a one-year-old without sedation. Well, it didn't take us long to find out. They swaddled Mathison like a newborn, then strapped him across his chest and upper legs to the table. They also had a way to secure his head to prevent him from turning it. The poor kid looked like a mummy....and didn't like it one bit. More screaming; by this time Mathison's face was bright red.

Luckily, we got the views they needed on the first try, sparing us further torture for a few minutes. We headed back to the lab to remove the arm wraps and get a sweat sample taken. Just when Mathison thought the worst was over, it was time to take his blood. It took 3 people to do it, he was fighting so hard. In fact, he wiggled the vein away from the needle before they had collected a full sample. They spent 10 minutes looking for another vein before finally deciding they could take the remainder that they needed through a finger poke. At this point, Mathison's face was a deep purple and his eyes were nearly swollen shut from crying.

Don't get me wrong - my intent is not to rant about the staff at PCMC; they were very good and tried their hardest to do everything in a professional, compassionate, and timely manner. Rather, my frustration came from having to watch my terrified baby get poked, prodded, and shocked .....and not be able to do one thing about it. I know that the tests were necessary and performed in Mathison's best interest, but it still broke my heart as I watched my child suffer. It was especially hard because as a young toddler, Mathison is used to me protecting him - and he couldn't understand why I was just standing by and letting others hurt him.

I hate feeling powerless - especially when it comes to my children.