I must admit that mapping out how I'm going to catch everyone up on our journey is a bit daunting. Due to some recent experiences with a greater circle of friends, I was reminded of my days at St. Mark's. I'm still amazed that I had so much to process on a daily basis that I was writing two blog posts a day. I know that Elisa says I talk too much, but that was extreme blogging. Of course, back then, progress was measured in hours. Soon, as Sam escaped his first hospital visits, the progress was measured in days. Sure, we had moments of going back to the hours (hello heart failure and embolization!). But after his initial procedure, we measured in weeks and not days. The pace of life and of Sam's journey reached the meaty part of the marathon. Where it's not impressive that you went 200, 300, 500 feet. Or past a 5K or a 10K. No, we've been on the nondescript 17th mile of the marathon, where you're still putting one foot in front of the other, but you've hit your stride and things don't tend to seem exciting until you're 3, 2, 1 miles from finishing the long journey. Then again, we've also been busy with our newfound measurement (when you go by weeks, you have to fill your time with other things!). I'll post extensive photo tours eventually (and by the end of my blog catch up, you'll even have a chance to see things in person), but over the course of the first 5 months of 2014, Elisa and I (with the tireless help of my parents) completely finished our basement, and then recently put in all of our gardens. To me, these activities have been the greatest sign of being in the midst of those long but uneventful miles of Sam's marathon. We were allowed to worry about other things, all while watching Sam head into his next big milestone - the next possible intervention and embolization.
When I left you last time, Sam's eating had increased exponentially as we came off of the heavy dose of Lasiks. We were running out of excuses to keep Sam on oxygen. I know, I know. I've talked for many blogs about wanting to get him off of the oxygen and cannula. But there is a definite "security blanket" feeling to the cannula. It's there to keep his stats up and to give you peace of mind when he's struggling (or seeming to struggle) with any breathing. The idea of taking Sam off of oxygen completely was dizzying and exciting. But it also meant Sam doing all of the work on his own, and the first 6 months of his life had taught us that Sam could only handle so much. But we also knew, as parents, that we needed to see how he could stand on his own. We needed to give him a chance. So we set a schedule. We'd get through the rest of the week (nothing like taking him off oxygen during the work week!), and we would head into what would surely be a sleepless night due to a lack of oxygen.
The time slipped by quickly, willing us to head into our next worry phase about Sam. I was prepared for it to be rough. We'd kind of gotten used to Sam's oxygen readings being in the 96-100 range on oxygen. The pulse oximeter literally never went off. We would only be woken up by Sam crying for milk, and then he'd be back asleep in no time. I also openly wondered if my body would let me sleep, fearful that something might happen without the oxygen and me being quietly and helplessly sleeping. But it had to be done. On a Friday evening, we got Sam ready for bed and left the oxygen cannula sitting on the oxygen tank. Sam's cannula free face glowed with giggles and a smile as I set him down. It was no commonplace, while he was awake, to see those same wonderful oxygen readings in the 96-99 range. Now, as I plugged him into the oximeter, I smiled at a good 98 reading and wondered what was in store for us.
I went back to our bedroom and clutched the video monitor (probably a little too tightly) in my hands. Our monitor has worked well in that it has two cameras. One for Sam, one for his oximeter. I kind of ignored the Sam camera. I set my sights on the oximeter and the heartbeat and oxygen saturation readings. Since it's been awhile, let me give you the quick rundown on what we were looking for. As Sam had come out of his embolization phase, we had gotten used to oxygen readings from 96-100. For a normal person, that's the normal oxygen range when we breathe. From a heart rate perspective, Sam would be in the 120-130 range while awake, and was known to dip into the 90-110 range while asleep. While I wasn't expecting us to stay with such high oxygen readings, I was hopeful that the heart rate would stay in a similar range...in many ways, that number scared me more when it was elevated. It told me his heart was working harder.
Sam took a few minutes to go to sleep, and as he drifted off, two things happened. Well, one thing happened and one thing didn't move. First, his oxygen readings began to drop. 96. 95. 94. 93. He seemed to level a bit there (from the doctor's perspective, we were hoping to stay at 90 or above). My worrying to me was the fact that he was starting to sleep, but his heart rate wasn't dropping. Firmly in the 130s, I worried about the pressure we were putting on him. With no change in heart rate, I went back to the oxygen readings. Now that I knew Sam was fully asleep, I wondered what we would experience. 92. 91. 90. We were at the baseline. Any further drops and we would have to consider turning the oxygen back on. 89. 88. And then the beeps. 87. Sam had triggered the oximeter alarms for the first time in months. It wasn't a sound I was really excited to be experiencing again. As it had been awhile, it immediately took me back to the night of Sam's heart failure and subsequent visit to PCMC. Yet, Sam didn't stay at 87. And didn't drop much further. He recovered back to the 90-92 range. And then would drop and kick off the alarms. This was the cycle for the next two hours. His heart rate still didn't adjust. It had moments of dropping into the 120s, but not much farther than that. Alarm. Recovery. Alarm. Recovery. I braced myself for a long night.
Funny enough, about 2 hours after he went to sleep, Sam stopped setting off the alarms. Sure, he had a couple dips when he rolled over, but Sam seemed to settle in in the 90-92 range for the rest of the night. His heart rate finally got consistently into the 120s, but I was slightly worried that he was stressed due to a lack of oxygen while sleeping. But he didn't get oxygen that night. I had to hand it to him...it wasn't an abject failure. He hung in there. He had shown strength. I shouldn't have been surprised. He had shown strength in some of the most tenuous moments of his short life. A little lack of oxygen was manageable. Still, I would head into the next evening with a sense of trepidation. I wasn't as worried about the beeps, even though they were annoying and still reminded me of the past. I was more concerned about the strain on me...would we be able to keep him off oxygen if I had a sense that his heart was dealing with greater strain each night?
The evening progressed quite similarly to the night before. He went to sleep at 97. He faded from an oxygen saturation level into the low 90s...eventually setting the alarms off. I did notice that the beeping seemed to lessen a bit earlier than the previous night. Even better was his heart rate. Where he had held in the 120-130 range the night before, today he was starting in the 120s. And he had moments in the 110s. I was encouraged. I went to sleep, hopeful that I would only wake to some minor beeping incidents...
I awoke sometime in the middle of the night, full of panic. Hours had to have passed, and I hadn't been glued to the monitor. I clicked the home button of my iPhone and started disbelievingly at the time. 3:05. No sound from Sam. No beeping. I grabbed the monitor, afraid of what I'd see. Sure enough, there was Sam, sleeping away. I could see he was breathing. Then, I switched the screen over to his pulse oximeter. It took a few minutes to process what I was seeing. Oxygen saturation at 95. Heart rate at 100. Could that be right? Those were numbers I was used to when Sam was on oxygen at night. I sat in silence and watched. No change to his numbers. Soundly sleeping. Sam was off oxygen. And not only was he holding his own, he was starting to regulate. The night before was full of anxiety. And sometime in the middle of night two, the light switch went on. And Sam realized that he could do this on his own. And he did.
Elisa and I were thrilled. Sam off oxygen. I remember hoping for that when he was trying to get out of St. Mark's. Here we stood, months after his embolization. Months removed from getting him off oxygen during the day. And for the first time since Sam graced our home, the oxygen tank sat unused in the corner. I couldn't believe it. Sam was getting better. We lived in bliss for about a week. Nothing was in our way. Everything seemed possible. Sure, Sam was still retracting, but the progress we had made was hard to wrap our heads around. The pulse oximeter was still attached to Sam's foot at night...while we removed one umbilical cord, the bigger one (that told us he still had a heart beat, and was breathing) was nowhere near being removed. But we were on our way. Until...we realized that we lived with two other boys. Boys that went to school and preschool every day. Boys that came back with sniffles.
Before Sam, we would hate to see Lukas or Miles get a cold. We knew that eventually the other would get it, and then Elisa or I would eventually get slapped with it. Thankfully, we never seemed to all get it at the same time, but we knew that things would be rough for a couple weeks. With Sam's arrival, however, a cold meant war. And we would go into the routine of doctor masks, OCD hand washing, and keeping the boys at bay as if they had the bubonic plague, not a common cold. And here came a cold. We tried so hard to keep Sam from getting colds, because they just taxed his system in a way that a normal, healthy baby wouldn't deal with. So we went into our routine, trying to prevent Sam from getting a cold. Things were going so well, this wasn't what we needed.
Of course, the minute we started going OCD with our cleanliness, we were already a couple days too late. Sam had the cold. We just didn't know it yet. Two days later, however, it was very clear. The runny nose. The dry, hacking cough. Sam was just on the cusp of sick with a cold. And I, of course, showed impeccable timing. You see, a couple weeks before, it was okay that I found out about a coming work trip. And sure, Elisa would be under tremendous strain, but she could do it. I had faith. I was slightly worried, though. Usually, my work trips consisted of a 1-3 day excursion. This trip would have me leaving on a Sunday and not returning until Friday. Again, a couple weeks before, I was just dealing with the guilt of putting Elisa through the hell of three kids. As the trip inched closer, it was clear that Elisa would now be dealing with three sick kids. However, the trip was a must. I had to go. And Elisa would have to go it alone. I felt sick...no, not the physical kind. I just felt horrible that I was leaving her on her own. Little did I know that Sam would make it even harder.
I left on a Sunday. That night, Sam really got worse. He stopped sleeping. He began setting off the pulse oximeter. It was a veritable disaster. First, the sleep. Sam had become a good sleeper. We would put him down and he generally would wake up between 3-4 to eat, falling back asleep until 6. Sure, he wasn't a perfect sleeper. Sometimes, he'd wake up twice. Other times, he would wake up early (1-2). But we were semi consistent. On my first absent night, Sam was waking up every hour. And crying...the out of control, cannot be consoled crying. Elisa and I texted back and forth as her worries built and my guilt mounted. Even worse, the pulse oximeter was back to its beeping. Sam would have moments in the high 80s, and his heart rate would stay high. It was like Sam had completed a perfect 180, regressing with each sniffle of the cold. No matter what Elisa tried, Sam kept waking up. And kept setting off the monitor.
After a horrible night and a rough day, Elisa was faced with evening #2, worried about what Sam would have in store. Sure enough, the evening progressed just as the previous one had. Beeping monitors. Waking up every hour (or less). So Elisa made a decision. Sam seemed to be under stress. It was time to bring back the oxygen. I can only imagine how difficult that decision was for her. We had come so far in 2 weeks, and with every turn of the tank handle, we were going back to Sam being sick and in need of supportive oxygen. Our dreams of a tank free life had vanished. Elisa hoped it would help Sam settle and sleep. I could only sit in my hotel room and wonder if this is what our life was going to be from here on out...or at least until our next embolization. Thankfully, the oxygen helped a bit. Sam's oxygen saturations had improved to the point that the monitor wasn't incessantly beeping, although Sam's sleep patterns were still very disturbed. Elisa started feeling the cold. She was trying to keep the other kids feeling okay, as they were getting over the colds. It was too much for one person, but she, once again, proved her strength by surviving the week. On her own. I was impressed.
And like that, Sam had come completely off oxygen, only to return right two it. For two weeks, we saw an oxygen free Sam. Two weeks later, we saw a sick Sam, not yet ready to fight little bugs on his own. He needed help. He needed a boost. While him coming off oxygen had been such an encouraging step, the regression put a level of fear into us as we stared at the next big thing. After months of "hanging out", and measuring Sam's progress in weeks and not hours, we were a week away from Sam's next milestone. A new MRI and the start of our march to his next embolization.
We could only hope that Sam's new reliance on oxygen didn't mean a greater need for intervention than we had expected.
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