It's moments like the two weeks between our first failed MRI attempt and our second journey to Same Day Surgery that make me realize just how compatible Elisa and I are. You see, when we're told that something can't be done, we come together. We're motivated and don't like being told what we can and can't do, or what we can or can't accomplish. Remember the lioness? And the lion? Need I say more? So after Nurse Over put the capper on the last MRI, we went into the next two weeks very motivated. Before we were denied the MRI, Elisa and I had tried to fit in Albuterol treatments into our day. We were so encouraged with Sam's improvement, we failed to do a breathing treatment in the two days leading up to Nurse Over. After being denied, however, we went on a mission. Sam was getting albuterol treatments every 4 hours. We directed my Mom to join the fun on the days that we had to go to work. We were sucking his nose constantly, keeping everything around him clean. Oxygen was firmly attached during the evenings. Every precaution would be considered to make sure that Sam's next MRI would take place, and we could start moving towards his next embolization. It's quite impressive to see us motivated. It's another world to just see how devoted and committed Elisa becomes to the cause. She coordinated schedules to maximize the treatments. She rubbed essential oils on Sam, and made sure they were in Sam's humidifier. She was a machine. A focused machine. A protective lioness.
Two weeks later, we were in the car and heading up for Sam's next MRI attempt. It's funny how a poor experience can change your perspective completely. It's quite strange that things changed in such a small period of time. Two weeks ago, we were almost overconfident. Sure, Sam had a cold that he was recovering from. But they'd do the MRI. It took us by complete surprise when we started realizing that the MRI might not take place. This time, I was almost expecting to be denied again. After all, Sam's congestion wasn't completely gone. He still had a little cough. There existed enough signs that would encourage a Nurse Over to really go into overdrive. Maybe she'd even suggest admittance to PCMC. I openly wondered if attacking a nurse for that reason would be considered a justifiable reason in the court of law. But we went in hesitant, and full of doubt. I kind of felt that I would be surprised if we got a green light, and proceeded forward. At least no one could say we weren't prepared, though. We'd done everything in our power to get Sam past his cold. It was now in the nurse's hands. We just hoped it wouldn't be the SAME nurse. I couldn't guarantee her safety.
This time, our MRI was scheduled for a couple hours later in the morning. Who knew that it would make our wait that much longer. Same Day Surgery was a much busier place, and I was too focused on Sam and getting the green light to pay attention to the sad stories and run down parents on this day. Plus, as we waited longer, Sam was getting impatient. After all, he hadn't eaten for 4 hours, and if you have had an infant, you know that eating is kind of their favorite thing...on schedule. So we walked up and down the hall outside Same Day Surgery. Outside the sad waiting room, I was more surprised to see the excellent people watching in the hall. Maybe it's because the collection of people in the halls were visitors and not parents to bond to, but I was more taken back by their interesting fashion choices, annoying parental approaches, or strange collection of snacks and food...at a hospital.
Soon enough, though, we were called back. I was immediately happy to see that Sam had put on a few more ounces. He was well above 17 lbs. now. We were escorted into the room and watched the nurse's assistant give Sam the once over. No comments. Not a word about the cold. We waited for the other nurse to come in. I had too much nervous energy. Why? I know...it's just a MRI, right? It could be delayed again. And you're right. It's just a MRI. It could have been delayed. But it felt like the key next domino to fall in Sam's story, and we were eager to look at him and not have a cloudy vision of what was to come. We needed that MRI. I didn't want to wait any longer. I'm sure the nurse that walked into the room quickly discovered this fact, as I didn't waste any time launching into a whole story about Sam being way past his cold, the albuterol treatments, and how much improved he was. The nurse probably thought I needed a valium. After I overcompensated for my fears of another delayed MRI, we let her take a look at Sam. And discovered quickly that this was no Nurse Over.
She was calm, and very confident about Sam and the coming MRI. Sure, she listened to his lungs and asked a couple questions about his cold. But his oxygen saturations looked great (100!), his heart rate was in the high 120s, and the happy little boy (well, except for being ravenous!) seemed just fine. So after a few minutes, she escorted us out of the examination room, down the hall, and into another waiting room. The MRI was on. Yet, instead of feeling relieved or happy that we had overcome another Nurse Over incident, I was suddenly anxious. Sam would be having the MRI. Sam would be put under. I wondered how he would handle it.
For the moment, though, we settled into our new waiting room chairs and heard that we were at least 30 minutes out. Elisa, the expert momma, carefully rocked Sam, who had grown more agitated with a lack of food, and before we knew it, he was sleeping comfortably in her arms. I could see the pure love in Elisa's eyes as she watched him sleep. Sure, she was anxious too, but over the past few weeks, I had really noticed how much enjoyment Elisa was getting from her little boy. We had some semblance of normal, even if those moments were punctuated with oxygen, albuterol, and a bulb syringe. She was getting snippets of a healthy baby. She was loving the catch up she was experiencing, as she had been so robbed of the first few months of Sam's life. You must understand that the infant stage is Elisa's favorite. She lost so much. Here, waiting for a MRI (which was definitely an unexpected place when we were thinking of Sam before he was born), Elisa was snuggling her little boy so closely, so lovingly. I couldn't help but stare.
30 minutes later, we found out that we'd have to wait for another 20 minutes. I suddenly wished that we had the early MRI. Being the second meant that we were at the whim of the first, and things were apparently going a bit too slowly. At least I had Iron Man 3 to entertain me, right? They had so many things going on to entertain the children. Frozen was playing behind us. I saw another screen with Little Mermaid. I won't deny that while Elisa was obsessed with a sleeping Sam, I was entranced by Gwyneth Paltrow and Robert Downey Jr. on screen. Sue me. It filled the time, as we ended up waiting another 30 minutes before we got a quick visit from Dr. Day. You know, for all the grief I give Dr. Doom in these blogs, anytime we are in that hospital, he finds us. It's one of the most comforting and truly remarkable actions I've ever seen from a doctor. He's busy. He has his appointments, cath lab, and probably a million consultations. But he's dialed in enough to know that we were in the hospital and Sam was having his MRI. He informed us that while the plan had been to get Sam his echo after the MRI, no one had really coordinated it. He went over to the nurse's desk and worked things out. He'll always be Dr. Doom. He earned that moniker. But that doesn't mean he hasn't become one of my favorite doctors ever. Flawed? Absolutely. But the man cares. About Sam. About us. About his patients. And when you really think about it, how often do you really find that in a doctor these days?
After bidding adieu to Dr. Day, we were finally escorted downstairs to Imaging. With every step, I became more aware that I would have to soon say goodbye to my precious little Sam again. I hated that part. It had happened so many times when we were in the NICU at St. Mark's, but they were really the hardest when he was at PCMC. The day that Elisa and I, with tears streaming down our faces, said good luck to little Sam before his embolization has been permanently etched into every other time I have to say so long. We made our way through the familiar halls, and into a familiar prep room, where they would put Sam to sleep. Now that we were down here, there was no lingering worry about his cold. No plans to stop and return in a few weeks. We were committed. They were prepping to put Sam into a very light sleep. They got him situated and started giving him some gas to breathe. It would relax him until they could officially use the anesthesia. Elisa and I went back to say good luck 3-4 times each. It was a strange sensation, reaching down and kissing him in such a sterile hospital environment, my nostrils filled with the smell of strawberries (the chosen flavor). I was immediately reminded of my initial feelings about PCMC. A hospital with horror stories, wrapped up in balloons, bright colors, and "bubble gum". Sam's pending anesthesia, surrounded by the sweet smell of strawberries.
Sam looked over and stared into my eyes when I said my last "good luck, buddy!" and started to walk out. Those brilliant blue eyes were clearly wondering where daddy and mommy were headed, but he didn't cry as we walked down the hall. Soon enough, we were out of imaging and heading towards our first distraction while we waited for the 90 or so minutes. Coffee was first on the agenda. We had become so educated on PCMC that we knew about all of the coffee options. Our favorite was still "Brews on 3rd"...a quaint little "cart" on the 3rd floor. We got our coffees and headed down to the expanded gift shop of PCMC. I was amazed at how much construction and change had taken place since Sam had last been admitted. In our September/October visit and December visit, the front area of the hospital was in full construction. Now, they were just wrapping things up in creating an open, natural light entrance to the hospital. I appreciated the more natural and subtle design to the aquarium-ish entrance of the past. It felt more peaceful. More comforting.
We perused the gift shop and Elisa found some slipper socks...for her. At of all places, a children's hospital. My eyes fell to a small little bear with a yellow sweatshirt on that read "Get Well". She got her socks, Sam got a new friend. It seemed fitting, as the last time we were at PCMC, we ended up going onto Amazon to order a Lion King musical attachment to Sam's crib. Maybe we were destined to bring something home from each of these milestone experiences at PCMC. It felt good, though. It felt like a special thing to be able to give to him when we would see him next. Speaking of, we went back to the waiting room and sat around, wondering how much longer it would be. Your mind does some crazy things when the "prescribed" time passes. If a doctor says an hour, you start worrying at 61 minutes. We were told 90 minutes. We started worrying at about 90 and a half. Dr. Day came by, though, and gave us a quick update that they had needed a few more images, and then would be doing the echo. I honestly doubt anyone else would have even told us had Dr. Day not found us, yet again. Dr. Doom...the most thoughtful bunch of gray clouds that you could ever imagine.
Eventually, though, we did get the word that we could go back and see Sam. One of the worries heading into this was that Sam had to be intubated. That meant there was a risk of not being able to extubate him. And that meant a night at the hospital. So that was the first anxiety as we walked down the halls to the Imaging Recovery room. However, the minute we saw him, peacefully sleeping, we realized we didn't have an extubation to fear. Sam was without a tube in his mouth. He didn't even have a cannula - instead, they were doing blow by oxygen to keep his stats up. When we arrived, they were just bringing him out of the anesthesia...I was curious to see how he would respond this time. Last time, as I said in my last blog, ended up unknowingly being the first indication of Sam's eventual heart failure. I was curious what the experience would be this time.
And early on, I was quite worried. Sam was very cranky as he woke up, but didn't seem to be satisfied. We tried to feed him, but he'd cry. We tried to hold him, but he'd cry. He'd scream when we put him down. He was generally an unhappy baby. More concerning than his attitude was his numbers. His heart rate was fine, but he didn't seem to be able to hold his oxygen saturations (asleep or awake) without the oxygen. We got a brief guilt trip from the nurse that we hadn't brought oxygen with us. Color us used to Sam not being on oxygen. I started to think I'd have to run home and Sam would be brought back with oxygen during the day...something that hadn't happened since January. We kept giving him blow by oxygen, though, and tried to get Sam happy. While he wouldn't eat consistently, I was still convinced that he was frightfully hungry, so I suggested that Elisa try one more time and she suggested I grab the iPad, which conveniently had Frozen on it. And that was the trick we needed. With a movie and milk, Sam finally started to settle down. And he ate very well. Thankfully, the more he ate, the more calm he became. And sure enough, by the time we had hit the first real song in the movie, Sam was content.
The guilt trip nurse, however, redeemed herself in my eyes (I didn't appreciate the guilt...I have enough of that on my own considering it was my genetic condition that caused this whole thing!) when she came over and informed us that Sam (sitting at 98 oxygen saturation) had been without oxygen for the last 10 minutes. She turned it off when he finally settled to eat, and was now confident that Sam would be fine leaving, even without a cannula. We removed the IV (which improved Sam's mood), and about 15 minutes later, we were packing Sam up and getting ready to go home. What a difference from our November MRI. Yes, we went home after that one, but Sam had a crackle, was miserable, and was with cannula. This boy seemed content, had no oxygen, and even better, had zero crackling noise to be heard. We guessed that due to the intubation, they did industrial strength suckle of his nose and throat. He sounded better than he had in weeks. I jokingly said that if Nurse Over had just let us progress, Sam would have sounded better two weeks earlier.
Before we left, we got our third and final visit from Dr. Day. This time, he was with his nurse coordination (Linda...we love her) and he wanted to give us the echo results. I braced myself, but didn't need to. Dr. Day was, again, not so gloomy. He stated that the echo results looked "pretty good". The right side of Sam's heart was not as big as it previously had been, and the pressures looked okay too. Was he perfectly healthy? No, not yet, but the results were very encouraging. Dr. Day told us to go home and get Sam back off the oxygen, and we would find out what Brockmeyer and Tosky's plans were the next day. When we inquired about the PDA, Dr. Day stated that he was undecided on whether or not to fix it quite yet, but we would see. He even mentioned that we could start considering how to get Sam off of the Lasiks. Wow. That was a nice cherry on top of a stressful day.
And with that, we were back in the car and driving home. Two visits to PCMC for one MRI, but the echo results were encouraging and Sam seemed to be holding his own. Even better, about 15 minutes after we had gotten home, Sam was sitting on the floor, playing...as if he hadn't had a MRI at all. No crackling. No crankiness. No health concerns to be seen. At least, not on the surface. I smiled at the little man, as he made his playful noises and threw a pacifier a few feet away. And then I steeled myself for the bigger reality. For as good as Sam looked, and as smooth as the MRI ended up going, and as hopeful as the echo results seemed, the bigger appointment was just 24 hours away.
Brockmeyer and Tosky would be waiting. And Sam's next step in his journey would be written.
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