Tonight in the PICU as I was saying goodbye for the night and chatting with the nurses and the doctor at the desk I realized I probably wouldn’t be seeing them again. Ben is being moved down to the surgical floor tomorrow morning and I won’t arrive until after that has happened. PICU nurses and are generally PICU nurses. I don’t expect to see them down on the other floors. They’ve all been so sweet and I love their personalities and the way they are with Ben. We’ve actually laughed a lot, if you can believe that. So, I said, “Well, since I won’t see you again, thank you so much for taking care of my boy.” And Q, one of the nurses…she’s called Q…said, “We’ll see you again, though, you’ll be back. Right?”
Screeeeeeech. We’ll be back for lengthenings in the not even so very distant future. Oh yeaaaah.
When I sit down to write this blog I always wish I’d taken pictures of our day. Tonight I wished for photos of the beautiful smiles on the nurses’ faces. Or a photo of them next to Ben in his wheelchair or on one of our walks around the 7th floor hallways. But the reality is that when I’m there the thought of a photo seems like a cruel act. Why would we want to remember him this way? I know my words can’t really conjure up the vision of him in his hospital gown, tubes and cords coming off him like a telephone pole, the pale color of his face, and the messy tousle of his hair. But, alas, that’s all you’re getting for now. Maybe tomorrow he’ll be more himself and I’ll dig the camera out from the depths of my backpack.
I try not to be superstitious, but I do knock on wood and I have been known to avoid saying things like, “Looks like we took care of that ant problem” just in case intoning that sentence might just entice the hordes back. Late yesterday as I sat on Mark’s chair-bed in Ben’s room I put the finishing touches on my new blog post. I had just finished editing and was literally, I mean literally, about to touch the “publish this post” button when the critical care doctor came in. It flashed through my head that I was tempting fate by posting that all was well with Ben, that things were “drama-free.” But I went ahead anyways and touched the button, sending my post to my blog.
And literally, I mean literally, the next minute the doctor told us Ben’s right lung cavity was partially filled with air or fluid. They put an oxygen mask on him. Apparently, the pure oxygen works to absorb the excess air in the cavity. Whatever was in the cavity was taking up crucial real estate, real estate his lung needed to expand into. He’d been complaining a lot about the lung exercises and coughing was, not surprisingly, painful and scary.
The whole lung thing has freaked me out since the beginning of this adventure. I read early on that a part of the VBS surgery was deflating the lung so that the doctors could get in through the side and between the ribs to implant the staples. I read with horror about the chest tube, which I really didn’t understand, that stays in after the surgery for at least a day. And the more I found out about it (you know I researched it) the worse it sounded. I even read about another VBS patient (at another hospital) whose lung had collapsed post-surgery and that was the most frightening of all, until I saw that she was discharged only one day after the initial discharge date they’d planned for.
But still, I’d pushed the “publish this post” button. I’d jinxed us and look where it got me. Sigh.
I didn’t sleep well last night. Actually, I should say I had trouble falling asleep last night. I got back to the hotel early, only around 6:30, but I didn’t really go to sleep until close to 2 am. It was hard to get going this morning, too. I think there was a part of me that was dreading something worse coming down on us. I know better than to be smug. I know better than to count my blessings too soon.
And in spite of that Ben made progress today. He got up, first with help and then more and more on his own telling us, “No, I’m going to do it myself” in a very matter of fact way. It is so hard making a post-op patient do something as difficult and strenuous, scary and taxing as walk or rise up out of a chair. I kept telling him to trust his legs, they knew what to do. And ultimately, he did, getting up first shakily and then with intention to walk out of the PICU and down the hall. He took a walk several times today, each time going farther and faster and feeling more accomplished. By 4 pm he took a walk all the way around the 7th floor, easily 8 times as far as his first walk this morning. And that last walk was accompanied by statements like “I feel good” and “I went a lot farther this time.” On one of the walks I mentioned I’d seen a parade out my hotel window last night. It was a rag tag marching band playing New Orleans brass music on its way to a jazz club nearby. It was Fat Tuesday, don’t you know. The irony wasn’t lost on Mark who commented on our little parade…Ben in his light blue hospital gown and oxygen mask, holding on to his pole of monitors and tubes, the nurse wheeling his oxygen tank, and Mark and myself, shuffling along at Ben’s baby-step speed. On another walk I asked Ben if he’d watched the snowboard cross races the night before on the Olympics and Mark said that next time we go out for a walk we’ll have our own PICU cross, complete with four kids with IV poles shuffling along. That would be something to see!
One thing the walking does is gets all the bodily systems to wake up. After almost 72 hours without food or liquids down his throat Ben got to eat some jello tonight…his digestive system finally proving it was open for business, so to speak. And it seems like the more he walked the more he shook off the effects of the morphine and anesthesia. I don’t think I really had absorbed how much those drugs would be like a veil over his personality. When I said before you wouldn’t recognize him it was this haze of anesthesia he was under. He was without affect. Emotional flat line. However, as he worked his body more and more today you could see the signs of Ben returning: he hummed as the nurses adjusted him in his bed, he cracked a couple jokes, he had me read Calvin and Hobbes to him, and he asked to watch more interesting tv shows. He also talked to me on the phone tonight and asked me to come to the hospital as early as I could tomorrow morning.
Which means I should get to bed early tonight.