Elisa has been giving me grief for falling off of the blogging wagon for weeks, if not months. She told me multiple times that people were asking where the blog posts had gone - they wanted updates on Sam, and since I spread the news that Dr. Doom was not as dreary as previous, and Sam could come off of oxygen during the day. That was over 2 months ago. No blog posts. No extended Facebook posts. Nada. For a few weeks, I've wondered where the blog bug had gone. Why wasn't I writing? Why didn't I pull out my computer every night, as I had since September? Well, here I am, writing again, both because I actually saw someone (on Facebook) as Elisa where the blog had gone, and I think I also figured out why the writing stopped.
You can all thank Amie Corey, one of Elisa's friends, for the return of the blog. She was the one that publicly asked, and her post was the one that pushed me to start writing out an outline of a 6-blog series to catch everyone up on little Sam. Yet, it was the hours leading up to the writing that finally opened my eyes to why I had stopped. For awhile, I had convinced myself that happy thoughts weren't as easy to write about (in a strange, twisted way). I also wondered if one of my chief reasons for the blog (public therapy) had faded, as Sam was no longer under a danger watch, and I could probably manage my personal feelings without long winded blog posts. It turns out, both were wrong. The writing stopped because I had hit an emotionally exhausted wall. For nearly 4 months, Elisa and I lived at the edge of sanity. Every day, we would wonder what could happen...heart failure, neurological problems, or worse (thanks, Dr. Doom). I'd thank the universe before I went to bed that we (and Sam) had survived through another day. I'd wake up every morning, worried at what the next 16 hours would hold. Dr. visits were worse, as some of the most "benign" trips would turn into horrific nightmares. So when we left Dr. Day's office in early January with a diagnosis of improvement, as well as a reduction in Sam's intervention, my mind decided it needed a break.
Blogging is, for the reader, a (hopefully) interesting story that they've never heard before. For me, it was reliving pain, agony, fear, happiness, hope, and the lack there of. As we drove home from Dr. Day's, there was silence...a type that hadn't existed before Sam was born. A few nights later, after I had blogged about our visit, I brought my computer to the bedroom, intent on writing more. I stared at the screen for 30 minutes. No words came...and that's saying something from me. It was as if I was tapped out. I needed to not write. I needed to revel in the fact that things weren't as dire as they had been. I needed to embrace the silent comfort of hope.
Over two months later, however, it's time to go back. And as I look all the way back, I'm surprised at how much has transpired. So while I thank you all for letting me have a blogging breather, it's time to catch you up. Let's get started.
When you last left us, Elisa had headed home with the go ahead to take Sam off of oxygen. It was more than we had hoped for. We were crossing our fingers for a reduction from 1/4 L to 1/8 L. Now, we were okay to take him off for 14 hours a day. We were thrilled. We were shocked. We were...scared. That night, we both sat and stared at the oxygen tank. Were we to start to tomorrow? How would he do? It was funny to me that for four months, all I hoped for was to be rid of the oxygen, and now, I was clinging to it as though it was the only think keeping Sam here. It turns out that, while annoying, the oxygen was more of a security blanket than an albatross. And being given license to remove the security blanket, we felt exposed and scared.
I wish I could say we were brave - that we pulled the oxygen off during the days and never looked back, but that's not how it went. No, we focused on small oxygen trials before bed. 20 minutes, 30 minutes, 40 minutes. And then the oxygen would return and we'd get through the day. We had a million reasons why the oxygen should stay - did he have a cold? Was he breathing harder? Was it a Wednesday? Every reason we could find was considered. No, we didn't just leave it on all the time. We'd have mini breaks from the oxygen. We got really brave one night and did it up to a nap. As it turns out, though, it wasn't us that finally pulled the plug. It was my Mom.
By this point, Elisa was back to work. So my Mom started coming back around to watch the kids. While her love for Sam was equal to ours, her dependance on the oxygen was not. So we would both leave to work, and my Mom would drop the oxygen. Sure, we'd come home worried that he was breathing harder, but he'd survived a day and we started wondering if he was doing a little better than we were letting ourselves believe. Logical me, when I stepped back, just saw oxygen levels (on the oximeter) of 90-93. It didn't seem high enough, even though he wasn't dropping into dangerous territory. But my Mom's actions gave us a little more confidence to see how Sam was going to do by himself. Before we knew it, Sam was off of oxygen during the days, save some time where his naps would worry us back to the cannula. But then, something amazing happened. Sam's oxygen readings started to change.
It was a Saturday after a long day without oxygen when I decided to plug Sam into the oximeter before turning on the switch at the tank. Usually, I'd get him set, turn on the o2, and then put him in his room. Tonight, I was curious as to how he held up during a very long day. The oximeter went on, the numbers popped up, and I was immediately sure that we were getting a bad reading. Sam was sitting at 97%...without oxygen. I was sure it was going to change. I was right, though not about the result. Suddenly, he was 98%...still awake, cooing at me from his crib. At 98% oxygen. I'm now convinced that Sam was ready from the moment Dr. Day said we could move forward. But this is a baby, and I sometimes forget that he is learning to do everything from scratch - including how to breathe. He needed to learn a bit - how to handle this thing on his own. I'm immensely grateful to my Mom for trusting Sam more than we were ready to trust him.
Like a light switch clicking on, though, Sam getting off of oxygen changed the world for the better. For four months, every day, were hooked to a tank at the top of our stairs. Sure, the cannula was on Sam, but it's cord extended around our own hands and feet. It grounded us in our house, and was a reminder of the struggles Sam had been through. You may be scoffing. I'm sure someone out there is thinking "I see people at the grocery store with a little oxygen tank all the time!" So do I. But switching to the small tank, always making sure Sam was hooked to a good flow, and the cord...the dratted cord...the number of times I tripped on that thing, I tell you.
But off oxygen, we truly did feel free. Elisa brought Sam to the boys swimming lessons one Saturday morning. I started a mini habit of bringing Sam to the grocery store every Sunday morning. We started going out to stores again. We started feeling normal. And while this was all wonderful (and it was), that wasn't the best part of the experience. No, that was when we finally let go of the cannula during the day. When I saw his face...his beautiful, cannula free face, I nearly lost it. He looked so different. Almost like someone who wears glasses all the time might look if they finally take them off. It's more subtle than you think, but you realize that your perception of them includes the glasses...or the cannula. It feels foreign...wonderful foreign...when it's gone.
As for the rest of Sam, I'll admit that the adjustment off of oxygen made us hesitant and worried elsewhere. We had tried to start him on rice cereal, but his stomach and intestines seemed to react - he seemed to have a constant belly ache and a bout of constipation. He was still on three doses of Lasiks, 3 doses of Sildenafil, and 2 doses of Zantac. And from a couple visits to Dr. Pete, we were well aware that Sam's heart failure episode in December had really slowed down his weight gain. The boy, while long, was not a chunky baby. While other kids were spending time morphing into Michelin Men (and women), baby Sam was using every ounce of his energy to pump an overwhelmed heart.
Yet, for all of the struggles, it did remain that it really felt like Sam was on the road to recovery. A long road, still with perilous and sharp turns, but a road worth taking. As for the oxygen, it took me about a week to get used to a cannula free Sam. And for now...for that moment, it also felt okay to put the oxygen back on at night. It felt like were keeping that security blanket just within reach, hopefully allowing us to try to get some sleep.
Sleep...now that was something Sam wasn't willing to give to us just yet. And there was still that pesky little issue of still not officially knowing what had caused Sam's fistula in the first place. In the back of my mind, I was always expecting to never find that out...to view Sam as a fluke, and one in a billion. How very wrong I'd be.
Until next time.
No comments:
Post a Comment