April 1, 2012
The picture from this day became the picture that represented Sam a lot during the course of his treatment. I love the funny little smile he has on his face. You can see it below. That picture got used for multiple fundraisers and was posted on about a bajillion people's Facebook walls along with good wishes, prayers, and healing thoughts. We were so fortunate in all of the love and support we received.
We were in wait mode that day. He had his MRI in the morning and I got to go with him to the imaging department, but not into the MRI suite. The nurse that took care of him while he was sedated for the MRI asked the PICU nurse a lot of questions about Sam's EVD and I could tell by listening to them that she wasn't entirely comfortable managing that kind of drain. I was expecting to have to be vigilant and intervene in his care in a general sense and had, to that point, been very pleasantly surprised by the quality of care he was receiving. When he came back to the area where they had asked me to wait, the stopcock on his EVD was wide open and the drainage canister was hanging well below his head (the drainage system was gravity controlled, so it being below his head was a big deal). After watching the cerebrospinal fluid stream out of his head and into the collection canister for a minute, I asked the nurse about it. She seemed unconcerned, saying that it had been clamped the entire time he was in MRI and her opinion was that a little extra drainage wasn't going to hurt. I reached across the bed and turned the stopcock to the 'off' position. I had been working very hard to not touch any pumps, equipment, or monitors while in the PICU, as patients and families touching monitoring equipment is a big no-no in any ICU. Despite the fact that they were all monitors I knew how to use (they were even the same brand we used when I worked in the ICU at my hospital), I had kept my hands to myself out of respect for our caregivers... except for that moment (and a very few others that came much later). I was trying to be the mom, not the nurse. It was an incredible exercise in trust and release of control and I wasn't always good at it. Like, at all.
After turning off the EVD, I looked at the nurse and said, "I need you to leave it off until we get back to the PICU." She let me be in charge of that. At the time, I was angry that she didn't seem as concerned about it as I thought she should be. Now, I don't know if she was actually unconcerned or if (perhaps) I was over concerned. Either way, she let me be in charge at a time when I needed *something* to be in charge of. I am thankful for that.
I will freely admit that I had a tendency to retreat into the clinical part of my brain as a way to shut off the emotional rollercoaster. I found myself more than once (maybe more than a lot of times) standing at the side of Sam's bed, talking over him to a nurse or doctor, asking questions as though I was receiving report. To call it surreal is an understatement.
When I allowed myself to fully feel, I was petrified. He, however, was amazing. As some of you know, his amazingness became the theme of our entire journey through treatment, as did the incredible display of fury he treated us to every single time he awoke from sedation....
Facebook posts from that day:
11:17am
The people up here are incredible. The nurses, doctors, everyone we're met... the coffee guy who didn't even blink when I burst into tears in mid-order. Last night was good, we all got some needed sleep. Today's been rough for all of us. Sam had another MRI today. Full spinal and re-do of his head with markers for surgery. Waiting for results. He woke up angry from the sedation. "I hate everything! I hate TV!" You know he's serious when he declares TV vile! *grin* I love his spunk.
We meet his surgeon tomorrow and will hopefully go ahead with the plan for OR on Tuesday. Thanks everyone! The messages and responses to posts are what get me through those middle of the night moments of terror about the outcome. It's easier to stay positive when he's awake. He's such a fabulous little guy.
8:39pm
Riding in the wagon is AWESOME. Especially when you have tons of stuffed animal friends riding along under the covers with you.
8:47pm
Today got better as it went along. Sam got up and walked around the unit for the first time, took a wagon ride out to view the sunshine through the windows and saw boats on the river as a bonus. He's in good spirits, except when he has to take his colace. Apparently it tastes like crap. (That's funny, btw) Thanks again friends for all the love and positive energy.
Continued in Chapter Four....
loving this, Jen.
ReplyDeleteWhen I was a kid, I played "chicken" with the sun. A lot. At all times of day, but particularly at sunrise and sunset, whenever I could. When the sun is close to the horizon, it's easy to gaze right into it, but the higher it rises, the harder it becomes. It's gorgeous and glorious and wondrous, that great fiery ball in the sky, but you know that the time will come when it's too much, and it will burn to keep looking.
ReplyDeleteReading this feels like that, to me. Luckily, I have a lot of practice. I'll never stop reading, no matter how bad it burns me, because it's that glorious.