Wednesday, October 2, 2013

Not So Easy

Yesterday, Gavin had another visit to Amplatz for his Kalydeco drug study.

I don’t know if we have been living in a blissful state of ignorance, but when your child has never had a hospitalization, watching him struggle in a hospital setting is heart breaking.

A tough part of the study is that it’s not being conducted at our normal clinic. Instead, its in a completely different area of campus so Gavin doesn’t know anyone on the team (with exception to the research team). And being surrounded by a room full of grown up strangers poking & prodding at you must be so overwhelming.

Yesterday, they failed twice to get an IV started on him. He needed the IV as they had to get several blood draws from him to observe how his body is handling the new medication.

After over 2 1/2 hours of going back and forth, and Gavin (understandingly) completely melting down, Casey and I demanded a regular old blood draw which went off without a hitch.

The research team then suggested we get another person to come upstairs with an ultrasound machine to aid in getting one started. With the help of this machine, they were able to get an IV started before Gavin even knew what was happening. Had I known there was a possibility of the crap Gav had to go through? I would have demanded this from the beginning. I mean, he is there for a RESEARCH study. Yes, a study for a life saving drug, but it’s a STUDY. All we ask is that they at least try to make it as stress free as possible. Why it took several hours and a completely traumatized child to try a different step is a question I’ll probably never get an answer to.

But no worries, I’m sure you’re not surprised that I didn’t keep my opinions to myself! I made it very, very clear that the morning was not tolerated nor was it to ever be repeated. For any kid.

Thankfully, once the IV was started our day went forward as planned. Delayed in time, but moving forward nonetheless.

One of the Child Life Specialists came in and spoke with Gavin several times, including the explanation of the IV using a teddy bear.


They also sent him home with a bag full of real (and safe) medical supplies for him to play with. My biggest concern was creating a fear of doctors in his mind and we’re hoping that having these items at home will help to ease any fears that may have been formed yesterday.

Trying to look your four year old in the eye and explain that yes, what is happening right now does help him tore me apart. Like any parent says – I wish I could have taken all the pain away and placed it on myself. I did manage to sneak off to the gift shop and stocked up on some toys. Well, kind of a lot of toys. Enough for the sales girl to look at me with a curiously raised eyebrow and me responding with a shoulder shrug and a guilty “I’m spoiling my kid and I know it,” glance back.


We spent the rest of the day laying low watching the clock slowly creep towards four o’clock. I don’t think we could have booked it out of there any more quickly. I keep reminding myself that the big picture is what we need to focus on. That the hard days are resulting in a healthier, brighter future. But as much as I try to convince myself of this – the difficult days are just that. Emotionally & physically difficult.