When you have a sick kid, you get to experience all sorts of contraptions - both in the hospital and at home. I've talked a few times about the bane of our existence, but the funkiest little machine you could ever play around with when it comes to technology and wanting to know how much oxygen is in your child's blood. That's right, our lovely own pulse oximeter. For those who are fortunate enough to not have to deal with this machine, let me explain it's function. In the most simple explanation, it's just a little box. You get readings on your child's heart rate and oxygen saturations. But in order to get that reading, you must affix a sensor to the foot. But you have to get it just right...there is a red light that supposedly passes through the foot, does the reading, and then the sensor spits out numbers for you to fret over. The ones that have come with the machine just don't last long, so Elisa would generally perform smash and grab jobs during our hospital stays. Hey, don't judge. If I can't get some good mental therapy while I'm there (that's another blog for another day), I'm going to go home with parting gifts.
But with a pulse oximeter comes the incessant beeping. Usually, it's an annoyance that tells you that your first, second, or third attempt at getting it set right has failed. You readjust, and things go back to normal. Other times, when Sam's crying incessantly, his oxygen saturations drop suddenly and you turn off the monitors until he can get under control. This is the way of the pulse oximeter. Even through colds, the stomach flu, and a few first rough days, that's been our life. Until Saturday night/Sunday morning. That's when the pulse oximeter did more than beep. It gave us an unexplained symptom. It might have saved Sam's life.
I had been writing a blog post to fill you in on our last visit to Dr. Ronald Day. Dr. Doom was in rare form, and one day, I'll surely give you the "best of" his doomy ways. But that blog seems almost silly now. At the very least, it feels like it happened in a previous life. Because our world, once again, changed. And it might not be the same from here on out. As a side note, any time you see me start a new Chapter of his story, you'd better brace yourself. Because it means we had an earthquake...good, bad, or indifferent, the game has changed. When I left you last time, you got to experience all of the cold and flu that you could handle. Little did we know that things were probably happening behind the scenes, even on the days that Sam was his best...happy, cheery, talkative, and sleeping through the night.
Last Friday, Sam had a rough day. It felt like his "cold" was coming back. He was irritable, and some of his crying/arching episodes seemed to be rearing their ugly head. Friday night/Saturday morning was filled with beeping, yet no matter how much we seemed to readjust, we'd get more beeping. Luckily enough, every time Sam's fussing would lead to a drop in oxygen numbers, they would recover soon after. We headed into Saturday, hopeful that maybe his cold would start fading away. We weren't fortunate, however. Sam was equally irritable, and wanted to be held all day. It complicated matters that we had chosen Saturday to have a redo of Thanksgiving with our little family. As the stomach flu had killed the original experience, we wanted to do it over. We cooked a turkey, made pie, stuffing, potatoes, and all the fixings. In spite of holding Sam throughout the preparation and actually enjoyment of it, we had a nice time. I'll never remember it, however, as Thanksgiving redo. No, it will be the calm before the storm. Our last family meal before things got complicated again. Because Sam's crying episodes seemed to be worse. And when we tried to go to sleep, the world changed again.
I knew something was wrong when Sam stopped eating. He had a great feeding at 4:00pm, but only did a half feeding at 6:00, and we couldn't get him to show any interest any time after that. It took a near act of God to get him to eat for a few minutes at 11:00pm, when we had calmed him enough between crying episodes and he wasn't overly exhausted. Because that's what the evening seemed to be shaping up to be. Put him down, he'd wake up in an hour, he'd go through a crying episode, would nearly collapse from exhaustion, and wouldn't eat. We'd put him down again, and the cycle would repeat. At least, that's where we were in the early evening. But then the pulse oximeter, after months of just being an annoying beeping machine, decided to show value. It beeped. For good reason. Usually, when we got the beeping, it was random or due to a crying episode. Tonight, Sam's oxygen saturation numbers would dip...while he was still and sleeping. 90-89-88-87-86-85-84-83-82-81-80...I even saw a couple in the 70s. Elisa and I went back and forth - should we take him in? Should we call our pediatrician? What should we do?!
At approximately 1:00am, as the oximeter continued to beep while Sam lay quiet and still, we made the call. Well, Elisa made the call and I didn't stop her. She was going to take Sam to Primary's. Maybe she was overreacting. We didn't care. Elisa had a sick, crying baby. I saw oxygen saturations that I couldn't explain away. Something was different. I wish I could say that we had rested for 3 hours before we decided to do this, but the only sleep we'd had was a 15 minute snore fest before Sam started crying again at 11:30pm. So as Elisa got dressed, I comforted Sam and got him ready to go. I can't explain the sense of worry and concern that washed over me as I watched Elisa pull away in the van. Sam was sick. He could be really sick. And my wife was heading out onto the roads at 1:30 in the morning, in the midst of a major snowstorm.
I would spend the next 5 hours, laying in bed, texting with Elisa. My account is only of the text messages. Perhaps one day, I'll cajole her into writing her own account. But from my bed, watching the snow, waiting for the boys to wake up, I learned about Sam's newest situation. And it wasn't good. The events started in the PCMC Emergency room. They did an exam on Sam and immediately got him on high flow (6 L) oxygen. With Sam's condition, they made plans to get him admitted to the Pediatric ICU. They took blood, and shot questions at Elisa like she was on the Q&A firing line. Elisa's texts, early on, were full of self-doubt. Did she overreact? Should we have called Dr. Pete? Were they intervening when there was nothing really to worry about?
I tried to tell her that it was good to know, even if he wasn't really sick. And then we got the blood test results. And again, our world changed. First up was the virus check. We had worked off of the assumption that Sam had just been plowing through a bunch of cold viruses. While not representative of every virus possible, however, their check on cold/sickness viruses came back blank. That's right...they didn't perceive him as ever (or at least not currently) having a cold or flu virus. That, in itself, would be puzzling. But then we got the results of the proteins in Sam's blood. Remember - this is the test to measure how much protein is in your blood. When your heart starts to fail, the protein increases. He had been tested twice previously, with results of 127 and 167. The results on Sunday morning were quite different. Sam's levels were over 1100. To put it in perspective, the doctor told Elisa that a child in full heart failure would have numbers in the 3000 range. Sam was already 1/3 of the way there.
Elisa was sitting in PICU, alone and scared. At 5:50am, once I got the texts telling us just how sick Sam was (yes, he was in heart failure), I called my parents and woke them up. I told my bleary eyed Dad that they needed to come get the kids and that Sam was in trouble. They said they were on their way. I got up and got dressed and heard the familiar sound (at 6:00am) of an opening door. Out came Lukas, ready for his regular Sunday routine of heading downstairs and turning on football. He stopped cold at the top of the stairs and stared into our bedroom. He knew something was wrong. I asked him to come to my bedroom. As he entered, he looked for Elisa and Sam. I sat down on the edge of the bed and told him that Sam was back at the hospital and was sick. Lukas started to cry. I held him tight, holding back the tears that wanted to stream down my face. I had to show strength to my son. I had to let him cry first. As I was waiting for my parents, I had a little time, so I asked him if he wanted to snuggle in bed. He nodded through teary eyes and we laid together. Lukas said a lot while we laid...why was Sam sick? No one else in the house had a cold. He didn't want Sam sick. He wanted him out of the hospital. He missed mommy. I just held him. For 20 minutes, we just sat in mostly silence, me telling him that Sam would be okay, privately hoping that I was right. Lights flashed on the house. My parents had arrived, and it was time to go to the hospital.
I hugged my parents and gave Lukas about 10 goodbye hugs. Miles was still sleeping and I couldn't bear to wake him up and have him cry, so I just let him sleep. I jumped into the car and traversed through the snow up to PCMC. I parked and headed up to the PICU. When I got to Sam's room, my heart broke right there. Elisa was holding a clearly sick Sam, tears streaming down her face. My wife looked beautiful, as always, but I could see the exhaustion that I felt. Outside of our 15 minute nap at 11:15pm, we had been up for over 24 hours. And the emotions were sapping what little energy we had left.
I got caught up on Sam's condition (specifically finding out the details of his proteins and their plans). Sam was indeed on high flow oxygen, but was awake. I was comforted that he was deciding to talk to the nurse while they got ready to move him to another ICU room, but the situation was clearly dire. The first step was Lasiks. No, this isn't eye surgery. It's a diuretic. Sam's heart was simply dealing with too much pressure. So the diuretic is designed to get the excess fluid out of his heart and lungs, to make the pressure come down a bit on the heart and make his breathing a little easier as well. When I walked in the room, the plan was to have one dose. When we moved, the plan had increased to twice a day for three days. Clearly, this wouldn't be your quick stay at PCMC.
We got moved over to our new room and settled in. I expected that we had enough for the day and wouldn't hear more. I was wrong. First, we had to try to wean him a bit on the oxygen, so Elisa could try to resume her feeding. At 6 L, they were afraid that if he ate, he might aspirate. So around 10:00am, they brought down his oxygen to 5 L and we watched. We didn't make it the full thirty minutes before the nurse gave Elisa the go ahead to feed Sam. He was aggressive...you know, like he hadn't really eaten in 12 hours. Oh, by the way, he hadn't. Next came another echo. I've really lost count, but I'm guessing that this was number 13 or so for our little fighter. This time, it was a limited echo to look at the function of Sam's heart. I'd been through so many that I thought it would just be a regular old echo and we'd move on.
As we awaited the results, it was time to see the boys. We couldn't bring them to see Sam, but they were thrilled to come to the hospital and head into the playroom. As she hadn't seen them for over 24 hours, I had Elisa go to greet them. While she was gone, our doctor returned with echo news. It sent more shivers down my spine. The right side of Sam's heart was weakening. It just wasn't squeezing at the level or ferocity that was needed, so they wanted to start a new drug. This one, called Milrinone, is a specially designed drug to help Sam's heart in just that way. First, it will help his squeezing in the right side of his heart (the left side, by the way, was great). Second, it would help his overall heart relax a bit. Between the Lasiks and this, Sam's heart would get a release from some of the pressure it had been dealing with. Before the doctor left, though, he dropped a new nugget of information. With Sam's heart failing, it was time to push on neuro to get the fistula fixed. He would be working with Dr. Brockmeyer to see if we couldn't push the gas on Sam's procedure. We were done with the waiting game. Sam was done with the waiting game.
Clearly, Sam's heart was done with the waiting game. He was ready to be fixed. So we headed into the evening of our first day (of our third stay) at a hospital ICU. Exhausted, Elisa and I made the decision to go home and get some sleep, so we brought in a lot of breast milk and kissed our little angel goodbye. We headed home and struggled to fall asleep. I think, in a sense, we both knew that the world had again changed, and today, it was about saving his heart from the edge of danger. Tomorrow, we'd start talking about fixing his head. And all the worry that would come with that. Tomorrow, we'd start understanding how to make Sam better...for good.
As I walked from the bathroom to the bed, I glanced at the empty bassinet. My heart hurt. But then I glanced at the pulse oximeter. It sat on the edge of Elisa's nightstand, silent and dark. And while my heart was heavy, I felt a bit of gratitude toward the machine that I had so wanted to boot from the house for the last two months. Because that beeping, today, had saved Sam's life. Tomorrow, we'd start exploring how to give him the life worth living.
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