The Day After

One of the most exhausting parts of Logan's illness is the sheer volume of patience it requires to cope with his volatile behavior following procedures. I am not a naturally patient person, so God is definitely stretching me like a rubber band. My hope is that I won't eventually snap.

When I arrived for my shift this morning, he was still undergoing his post-op MRI. He awoke from the anesthesia suddenly and quickly in the recovery room, and a storm commenced: He wanted daddy, he didn't want me. There's nothing new about that. It's been a commonplace occurrence over the course of his treatment. I accept that. The rejection cuts like a knife to my heart at times, but I understand. He tried to slap me away and screamed and cried for Adam. Only the promise of a juice box paired with three shots of morphine settled him enough to allow us to return to his spot in the PICU.

Once there, confusion and chaos ensued as his old nurse tried to fill his new nurse in on the relevant details. I felt completely helpless as I stood there listening to him scream and cry for food and drink while the nurses fiddled with his many, many tubes, trying to re-enable all of them as quickly as possible. I'm his mother. I knew that if he could just have a drink he'd go silent. But somehow, I couldn't manage to communicate that to the nurses. There were worries about him throwing up, uncertainty over what the neuro team wanted. And no one was in a hurry to figure it out. So I had to listen to him cry and watch him suffer as he writhed in thirst and his little tummy spasmed with hunger pangs. And it was horrible. Fortunately, the lines were established correctly, the proper questions were asked, and he got his miniature box of apple juice. As I'd predicted all along, he sucked it down in 30 seconds flat, asked for another, drank it, and settled into a quiet, peaceful state.

It's emotionally exhausting to feel pushed to one's limit, frustrated, hurt and heartbroken all at once. It crushes me to see him in such discomfort, to see him so very unhappy. At the same time, it's frustrating to hear him yelling the same complaints ad nauseum. I'm still human, so I still feel prickles of irritation, despite being cognizant of the great suffering he's had to endure. It's harder still when I don't feel like he's getting the care he deserves. I've not been truly angry often during the past six months because in general, the care Logan has received at CHO has been very good. But today's experience, the 15 minutes when Logan's comfort didn't seem to matter to anyone who could do something to help him, was horrid.

But I guess that's just part of our reality right now.

I'm sure this sounds substantially more negative than had been my intent. I'm tired; Brady decided that sleep was for suckers last night, so the needle on my tank isn't just empty right now, but below empty. The reality is that my sunshine is doing quite well. Yes, he was cranky, but praise God that he was alert and aware enough to be angry over being in the hospital. There were points in time during this journey that saw him desiring time at the hospital because he knew that it was the best place for him to be; because he knew that Adam and I simply couldn't make his owies better at home. He's off oxygen and he looks good, considering that he's fresh out of neurosurgery. He's mad over his foley catheter and wants to stand to use the restroom. He's truly a picture of resilience, and we're so unspeakably grateful for that quality that God has given him. I wish he didn't need such strength of character; after all, he's still a 4-year old little boy. But obviously it's good that it's part of who he is.

As always, there are so many more things I want to say. So many thoughts I want to share, so many feelings I want to try to express. But what I need is rest, so off I go. Blessings to you, and thank you for your continued prayers as we continue fighting this battle.