It's funny what kinds of things make you feel "normal". It's not the big stuff, but the smaller things that put you at ease...and tell you the next few minutes, hours, days, weeks, or years might be okay. For some, it's putting on pajamas. After a day of work, you get home, lose the stuffy clothes to impress, and jump into the most comfortable clothes you have. For others, it's coming back to your house after traveling and climbing into your own bed. For Elisa, normal probably involves a Grande Non-fat Mocha with half the syrup. From anywhere. No, really. So after the festivities at the Neurology office, and the fantastic news from Dr. Tosky and Dr. Brockmeyer, I settled into the idea that our life wouldn't involve trips to PCMC until September (for Cardiology) and November (Sam's next MRI). Yet, the idea of not having a doctor's appointment isn't exactly normal. And since Sam had come into the world, the idea of normal was really lost. Nothing felt normal. Even snuggling with the little man invited worries of retractions and oxygen. Every cry could have been more. Every beep on the (let's face it, abnormal) pulse oximeter gave us pause. So what was normal going to look like after we had arrived at a point in Sam's journey where there was no pending "medical intervention"? I was surprised at how it manifested itself.
I can't speak for Elisa. Her normal is probably more meaningful and personal, but mine was all about planning. Trip planning. You see, I'm OCD. You can go back in the blog (September 2012) and read about 10 blogs about our trip to Florida and how I had plotted every detail. So when we found out that Sam was going to be okay, at least for the time being, I started writing down some ideas. Those ideas turned into a spreadsheet. That spreadsheet evolved into tentative vacation plans for 2014-2018. That's right. If I have my way, I know where we will be going for the next 5 years. That felt normal. Travel felt impossible with a sick kid, especially one that had scared us with heart failure and a miracle embolization. Now, the concept that we could all get on a plane and travel as a family felt like the most normal thing in the world. Since that day in May, I haven't stopped planning. It's like I can't get enough of this normal. Sure, it's not perfect. We know that Sam's fistula is still there, and he still has retractions. But it's the closest thing to normal we've had since before 9/11/13. I'd take it. Then again, being "normal" meant a few more things had to happen in relation to our little Sam. The safety nets, as it were, had to be severed.
And when we talk about safety nets, there were three that needed to be addressed. First, we needed to get Sam off of oxygen again at night. After the fun (okay, maybe not so much) of having the pulse oximeter beep through the night the first time, we weren't looking forward to it. Second, we had to deal with the PDA that was still in Sam's heart. While we weren't doing an embolization, a procedure to close that could still be on the horizon - we needed to find out the plans for that and act accordingly. And third, we needed to start addressing the idea of Sam's medications. No embolization? As much as I'm sure Sam was enjoying the viagra, we didn't want him on the stuff if we weren't intervening.
And so, we began. Literally, the night of the Neurology appointment (hey, we didn't waste any time in embracing the new normal!). And we figured we would just deal with each of these, one at a time. Oxygen was first up, and to be honest, it was us more than Sam that had been holding onto the nightly comfort. Sure, it had probably taken some pressure off of him during his bouts with colds, but I think it was more that we liked to not have a beeping pulse oximeter that was keeping us up when Sam was getting precious minutes of sleep during the middle of the night. But we had gotten him off oxygen once before, and we knew (or hoped) that we could do it again. We were also blessed with a fortunate byproduct of the MRI - a lack of congestion/gargle in Sam's nose and/or lungs. We noticed it after we took him home on MRI day. We figure that the industrial strength suckage equipment at the hospital did what our ineffective bulb syringe could not - get the deep stuff out. So, without a gargle and with a happy baby that had just received fantastic news from his Neurology team, it was time to pull the oxygen again. No time like that day, right?
I wish I could say that he came off the oxygen and his saturations didn't dip. That we just all slept a bit better and the oxygen tank just sat in the corner. Don't get me wrong. Sam was taken off of the oxygen that night, but we returned to the game that we had played just weeks before. Sam would start with saturations of 96-98, and by the time he went to sleep, he'd dip down into the 88-92 range. And then you'd hear the beeps. He'd level out. And then you'd hear the beeps. It wasn't nearly as bad as the first time we had tried to wean him off of the oxygen, but it was nerve-wracking all the same. In many ways, it was a bit more worrisome than before. You'd think that a 6-month "clean bill of health" would make you worry less, but it heightened the fear every time the pulse oximeter would go off. Thoughts like "I thought he was supposed to be okay" would race through your head, whereas when he was sick, you'd just worry that it meant something worse than the baseline you had struggled to accept over months. But we were resolved.
The thing is, after a couple hours of beeping and saturation dips, Sam recovered for good. I drifted off into an uneasy sleep, and woke with a start. How late was it? Was Sam okay? My heart raced as I grabbed my phone - 1:52 AM. No beeping. No noises. I grabbed the monitor. There was Sam, sleeping soundly. I switched the view to the pulse oximeter. 95. Heartbeat in acceptable levels. At that moment, I felt like I was getting Sam's confirmation that things were on the right trajectory. I went back to sleep, waking about every hour to see his saturations. Amazingly, I saw moments of 95, 96, and even 97 while he was in a deep sleep. I was absolutely encouraged by his progress. The next morning, as Sam woke up, his saturations increased as well. 98-99-100. Sam was off oxygen completely...exactly one night after Sam's marathon MRI and Neurology appointments.
To this day (over a month later), Sam hasn't come close to the oxygen. No need. His sleeping gradually improved as the oxygen became more of a distant memory. At the worse, he has been sleeping from 8:00pm - 5:00am. Some mornings, he has made it to 6:00am. On the rare occasion, he's slept until 6:30am. Like his two brothers before him, Sam has the annoying habit of being an early riser (I listen to parents that say their kids sleep until 9 and I'm instantly jealous...Lukas routinely is up at 6:00am on the weekends, and Miles' idea of sleeping in is 7:30am.). But it's nearly a full night's sleep. And his better sleep seemed to be immediately related to a lack of oxygen. No, I'm not suggesting the oxygen was hurting him. But I wonder if the cannula and the ever flowing oxygen (as air) was annoying enough to wake Sam up. But, regardless, step one was complete. Sam was off oxygen and hasn't looked back once.
Which took us to item #2. The PDA. This has been an interesting journey with Dr. Doom (and even before). In the very first echocardiogram at Sr. Mark's Hospital, we were told that Sam had a small hole in his heart. Just days later, the St. Mark's tech with the third echocardiogram told us come great news...Sam's PDA had closed. We were relieved. One thing to check off the list, right? Of course, that conception was dashed when we met Dr. Doom. The PDA was still there. Small? Yes. But present, and putting pressure on his heart. The chief concern, at that point, was the fistula and I remember being surprised to learn that the PDA actually helped Dr. Doom understand the pressure Sam's heart was under (it gave them a new way to read the differences between pressures in his heart and aorta). Next came the heart failure, the recovery, and our January Cardiology appointment where Dr. Doom first introduced the idea of fixing the PDA altogether (by catheter or surgical incision between the ribs). For awhile, we expected this to be the definitive next step on the heart side of Sam's journey. But then, after the MRI, Dr. Doomy indicated that they might go fix it or they might wait. It all depended on what the Neurology team said.
So here we were, with a clear next 6 months from Neurology. We expected that Sam would be having a procedure this summer...just not the initial one we had planned on. This was reinforced when Dr. Doom had told us that he felt the PDA was putting more pressure on Sam's heart than the fistula was now. It sure sounded like an intervention was in order. So I placed a call into Dr. Doom and his nurse Linda. I expected to hear that we would have to go back into Cardiology and schedule his next surgical procedure. A day later, Elisa got a call back from Linda. The news, as is par for the course at this point, was unexpected.
Linda was completely supportive of Sam's improvement, as was Dr. Day/Doom. In fact, Dr. Doom was comfortable enough to treat Sam like any other patient that "only" had a PDA. Dr. Doom wanted to wait until Sam was 3 years old. That's right. No Neurology consult for 6 months. And a potential 2+ year delay on any heart intervention. Linda pressed forward. Sam was recovering. His last echocardiogram still showed an enlarged heart, but progress had definitely been made. So what were the next steps? How were we supposed to act? As if Sam had been okay the whole time, apparently. Linda's direct quote was "treat him like the normal baby that he is". A normal baby? What was that? The idea felt foreign to me. How do you treat a fragile child as if he wasn't so fragile? Through a return call by me to Linda, I started to understand what it meant.
Quickly, I realized that this bit of advice had less to do with Sam and more to do with Elisa and me. First, we were told to get Sam off of the pulse oximeter. Apparently, living like a hawk, circling those numbers every night, was not helpful to us or to Sam. He was getting better, and our incessant worries about his numbers was just going to force us to "hold on" to some of Sam's interventions for our own sanity and sense of calm. So the pulse oximeter would have to be turned off. I silently pondered how long it would be until we could sever that security blanket. Second, we needed to get out and stop living around Sam's "condition". To be fair, we already knew this part and since he had come of oxygen (during the day) in January, we'd started venturing out of the house. That seemed to be one we could tackle. And the third? Well, it had to do with out third goal anyway. Sam's medications.
With the newfound confidence in Sam's condition, at least for the near future, I pushed a bit harder on what Dr. Doom's medication plan was. Since Sam had come home, we had become used to Sildenafil three times a day, Zantac twice a day, and added Lasiks twice a day, which was added to our daily routine after Sam's heart failure. After our January appointment, we had moved Sam down to Lasiks once a day, but the medications still seemed to be a little dissonant with Sam's immediate prognosis. So we started with the Sildenafil, knowing that the Zantac would last as long as the Viagra did. This was a bit of a mixed bag, in terms of Linda's answers. No, we couldn't just get Sam off of the Sildenafil. But, unbeknownst to us, Dr. Doom had already been working on getting Sam off of the Sildenafil. Before Sam's heart failure, we moved from 1.6 ml to 2.0 ml, based on Sam's growth and larger size. I never realized that for the next 5 months, Dr. Doom didn't increase Sam's dosage. So while we were continuing to give him his medications, he was actually getting less and less of it (per his size) with every ounce that he was gaining. He would grow out of it, per Linda. And then they would take him off of the Sildenafil. Knowing that this was good, but not immediate enough, I turned my attention to the Lasiks. Could we get him off of that, at least?
Linda ended up consulting with Dr. Doom on this, but the response was cautiously optimistic. They didn't want to rush Sam off of the diuretic, but they were willing to start the process, albeit with baby steps. We'd move to Sam having Lasiks 2 out of every 3 days. That meant that Sam would actually have 2-3 days per week without one of his medications! Joined with the great sign that Dr. Doom hadn't increased Sam's Sildenafil for months, we felt we could cross #3 off the list. That just left pesky #2. And that blessed pulse oximeter.
I thought it would take weeks, if not months, to sever the ties to that machine. For all of the pain and worry the pulse oximeter had brought, it was still so comforting to see good statistics when Sam was out of our sight and room, in the middle of the night. It had been critical as we took him off of oxygen, simply to know that he was still okay. And when a nightmare took hold (and Elisa and I have had plenty in nine months), we could see the numbers and know that it was all a bad dream. It had been the last indicator that Sam needed to go to PCMC (when heart failure had begun to take hold). It was the first thing I checked in the morning and the last thing before I'd allow myself to fall into an uneasy sleep. How could we let go of that? The answer was simple. We had to. For Sam, and for our own longterm insanity.
We took one more night with the pulse oximeter on, and then we pulled it off. It officially went away in early May, and although we talked a few times about putting Sam back on it, just to see how he was doing, that idea never came to full fruition. The first night, I'd wake up every hour and stare at the little monitor. Without numbers, I'd focus intently on the small image of Sam, hoping I'd see him move or take a breath. The next night, it was easier. And the next. And the next. Now a full month removed from the pulse oximeter really being a part of our life, I still check the monitor 2-3 times per night but it more out of habit than out of fear. We were, as best we could, starting to treat Sam like "the normal baby that he was".
So here we are. Sitting in the middle of June, with Sam slowly coming off of Lasiks, off of oxygen completely, and unplugged from the pulse oximeter for over a month. We're trying to see (and are starting to succeed) Sam as a normal baby. He's still our miracle. He's still our porcelain doll. But he's also showing signs of being that normal baby that we were told we have. It was time to embrace that and start enjoying every second of this wonder boy in our lives. Because at multiple times in his first 3 months, we didn't think we would have him with us. The idea of a 9 month old Sam seemed foreign. Now, we're hurtling toward a 1 year birthday with daylight in front of us...stretching as far as the eye can see.
While we're current with Sam's journey now, we're not current with the blog. We have one more to go until I can officially say I'm caught up. After this momentous news, Elisa and I are starting to really appreciate what the journey has entailed, and how many people were there for us when they didn't have to be. It's about time to celebrate Sam, rather than worry about him. It's about time to celebrate you too.
Until next time...
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