Tuesday, November 20, 2012

The little things that are big things that I am grateful for

Today was a tough day. Any day you have to take your child in for a medical procedure -- whether it is a simple vaccine or a necessary surgery -- is a tough day. Though you know that you are doing the right thing in caring for them, seeing your baby in distress or hurting is just not good.

This was Simon's 4th MRI so I knew what we were in for. Abstaining from food, getting IVs, getting sedated, coming out of sedation very angry, vomiting, visiting Neurosurgery to get the shunt reprogrammed, and then an hour or so drive home in DC traffic. Yuck. As grateful as I am that things like MRIs exist to help us care for our guy I'd been dreading it (and fearing the outcome) since I scheduled it.

Last night, when I expressed my worry via social media I got a flood of love (and cookies!) from so many friends. I am so grateful. Knowing that so many folks are routing for us is huge. Every little message of encouragement, every new friend I make that reads the blog and sends love, everyone that offered cookies, wine, a partner to be a hot mess with, or just said good luck (my mom even did my dishes and made us dinner) made me feel a lot more positive and a little more sure I could keep on keeping on no matter what the road ahead looks like.

Fortunately, today things went a lot better than I thought they would. For one thing, the shunt malfunction we were concerned about is not an issue. Or at least not an immediate one (something else is causing all the vomiting, which is now nearly constant.. poor Simon has already lost weight and is constantly hungry), so there was no need for the emergency surgery I was braced for. For another thing, this was the first time we had an MRI done at Children's National instead of at Johns Hopkins and the difference was immense.

At Children's they do something that STUNS me simply because I haven't experienced it before. They put the child first. At every visit we have been to, every step of the way, we are accompanied by a child-life specialist whose sole job it is to make the child as comfortable as possible (which directly translates into the comfort of the parent!). Today, our CLS brought Simon the medical equipment to play with before it was used on him. She found out what his favorite video was so she could have it playing when he went under sedation. She checked on him and on us throughout the procedure.

Additionally, everyone we encountered expressed the desire to do things in the least traumatic way for Simon. Instead of placing an IV first (like they have done at Hopkins), they sedated him first using his choice of flavored gas while his favorite video played. They waited to undress him and draw blood until after he was under. They assured us his safety was their first concern and they checked in midway through the procedure (during which time we were encouraged to grab some lunch) to let us know Simon was okay. Instead of having to take an angry and drugged Simon to the neurosurgery department to get his shunt reprogrammed they came to visit him in recovery to set it while he was still sleeping. When we came to find him, he was wrapped snugly in his favorite blanket and being fed a popsicle with his eyes still closed -- which cut WAY down on the angry post-procedure Simon we are used to.

A lot of small things, but what a big difference. I'm grateful for all of it. And, since we are so close to Thanksgiving I want you to know, dear reader, how grateful I am for you. This blog means a lot to me and knowing my words aren't going out into a vacuum is a big deal. Also, after spending so much time in hospitals recently, I'd encourage everyone to be grateful for their health, and the health of their loved ones. Hold your babies close friends -- we should never take a moment of it for granted.


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  2. Laura -- Your spirit is a constant source of inspiration! I'm glad you all had such a positive experience in DC -- what a difference it makes when medical care isn't all about the doctors' and hospitals' convenience, but about the person -- in this case a child -- who feels sick, is frightened and angry. Love to you and your family. Cameron

  3. I'm so glad that went well! What a difference!