On this night, I sang that very song as Sam started to collect himself. The oxygen saturation meter was still beeping in between my words, but it was slowly creeping towards the magic number 88 - the percentage that would stop the beeping and give me a chance to breathe a sigh of relief. 84, 85, 86. Sam was still struggling to catch his breath. 87. Always hanging out on 87 like a taunting bully in the corner. Sam coughed, trying to relief himself from the pain and saliva clearly built up in the last few minutes. 88. Finally 88. The beeping stopped, yet I could still hear it in my ears. Sam slowly calmed, although the gurgling didn't dissipate. Before I knew it, his saturations were back up to 94-95-96. He was finally willing to take his bunk, and I laid him back down. I walked out of the bathroom and closed the door. As I walked back to my bed, I could just make out the labored breathing. I climbed in, closed my eyes, and wondered how many minutes would pass before the beeping would once again pierce the quiet of our bedroom. And I wondered...how could this be the hard part? That was supposed to end by mid-afternoon.
It's been an eventful two days in Sam's story, to say the least. Yes, the next milestone in our adventure had arrived, and this one-two punch would offer some interesting challenged and experiences. On Wednesday, Sam was scheduled to have his second MRI - an exploratory view of his fistula, and Dr. Brockmeyer's chance to "compare apples to apples" to see if the fistula was changing. This wasn't a simple procedure. Because you need to be still for an extended period of time (and the machine isn't quiet), they would have to intubate and sedate Sam through general anesthesia. We would take him home by mid afternoon and then were scheduled to return to PCMC on Thursday morning to meet with Dr. Brockmeyer and to see if we had a plan. Both events happened, with both expected and surprising results. Some of which, we're still battling with tonight.
Tuesday afternoon, we decided that the kindest thing (to both the kids and to my Mom, who would be watching them) was to give the boys an overnight. A night away at Grandma and Grandpa's house would allow the boys to get their full sleep, my Mom the courtesy to not have to be at our house at 6:15am, and us the peace of mind that we could arrive at PCMC by 7:00am without a mad rush in the morning. We took advantage of the quiet house to get some dinner, spend some quality time with Sam, and get to bed a little early. We had to adjust our regular schedule because Sam's MRI was set for 9:00AM and he couldn't have anything to eat or drink after 5:00AM. So we got up at 2:30 to give Sam his first feeding, and then raised him from sleep at 4:30 to deliver his next dose of Sildenafil and his last meal before the scheduled fast. We laid back down at 5:00am. By my calculations, we could get another 45 minutes of sleep and then still be on time. I fell asleep. Elisa, true to form, pulled herself out of bed and went to exercise. I jolted awake at 6:05, realizing that we only had 25 minutes before we had to be out the door. Forget the shower - I was simply grateful that Elisa entered the bedroom with a hot cup of coffee. My nose reacted immediately. My eyes still hadn't gotten the message that their natural state during the day should be in the open position. Eventually, we ran through the house in the mad rush that we were hoping to avoid, wolfed down some quick breakfast, and were in the car only 10 minutes late. 20 minutes later, we were at Primary Children's, heading to the second floor and same day surgery. No, Sam wasn't having surgery, but the general anesthesia was one in the same in getting checked out and ready to be put under.
After checking in, I had another PCMC moment of guilt. I felt a bit angry, driving up to PCMC on Wednesday. Sometimes, even weeks after Sam's arrival and subsequent medical difficulties, I find myself angry. Why us? Why Sam? What would life be like right now if he had been fine? Would I be planning a family trip? Those moments carried me into the waiting room. And then I looked around. We were surrounded by sick children, checking in for actual surgical procedures. There was a little girl with a cleft lip. Another girl, whose mother was telling another mom that she needed some cysts removed. One mother was clearly overwhelmed with twins in her hands, asking the nurse to help her carry some bags. But it was a little boy in a wagon that made me feel most guilty for being mad about Sam's condition. I'm not sure of his syndrome, but his mom was telling another parent about the trials he had been through. He had been dealt with such severe cranial stenosis that they had done brain surgery. Today, they were removing the pins that had held the skull pieces into place. He had a breathing apparatus because he had been born with constricted airways. I watched as his Dad cleaned out the tubes so that the gurgling sound would fade. The boy's hands showed only 4 fingers...his middle and ring fingers were one and the same, even though "structurally, he has all five fingers...they'll fix that down the road if he wants them to." Yes, this was heartbreaking but my guilt came from the smiles that emanated from this little fighter of a boy. He liked playing with his Dad. Loved being in the wagon. Loved his Mom trying to sort out the uncontrolled curls while they waited. Yes, Sam's condition is serious and his heart is under a true attack. His future isn't written. But we have been told that Sam has an end in sight. If everything goes to plan, he could leave this part of his life as a collection of chapters, not his whole book. This boy would have issues for his entire life...and he was smiling. My guilt overwhelmed me. I had to look away.
Before we knew it, we were taken back by a nurse. Sam got checked out and we were prepped for our day. We would be greeted by Sam's Anesthesiologist and would head down to Imaging. There, Sam would be intubated (a tube inserted into his throat to help him breath) and general anesthesia would be administered. Sure enough, we soon met our doctor and headed downstairs. We informed him that Sam had gone through this routine once before. I sensed that this doctor had a little "Doom" in him, as he said "if we can extubate him, he'll recover and you should be able to go home by mid-afternoon. If not, we'll leave the tube in, and we'll send him to ICU to let them sort it out!" Ummm....thanks? And then we were greeted with the hardest part of the day so far. You'd think that we'd know Sam would be fine, but having to give him a kiss and leave him to get general anesthesia is not kind. It hurt my heart to walk away, because in those moments, you don't think "hey, this is a piece of cake!" You worry that something bad is going to happen. For a split second, I wondered what I'd be like when kissing him goodbye for brain surgery. I let that thought slip away as quickly as it had appeared. I'm not quite ready for that one.
We were told that the procedure should be about an hour, so Elisa went off to pump (no breastfeeding, obviously) and I got our second cups of coffee. Yep, the eyelids were still failing me. I needed espresso, stat! With those two pieces out of the way, Elisa settled into a quiet waiting room and pulled out our work computers. When you're waiting for your child to get out of a medical procedure, sometimes a release like work is a welcome thing. It was today, although I had to feel bad and chuckle at Elisa. One of the detriments to being short is that very few chairs are designed for you. So here I was, Daddy Long Legs, with my laptop comfortably sitting on my....lap. Elisa, on the other hand, was strategically holding her laptop. The angle her legs took when her feet were flat on the floor looked like 30 degrees. Her laptop was slip-sliding away. She tried to put it on the diaper bag (too tall). My computer bag (too heavy). Soon, Goldilocks...errr...Elisa settled for the laptop going on a side table and rearranging her chair to make a faux desk. Whatever it takes, right? About 90 minutes after we left little Sam, a nurse came out to get him. We got our first blast of good news when she said he did great. We got our second when we were escorted back to see a sleeping Sam getting treated with a little funnel of oxygen. Elisa took him in her arms and I started to think that things were looking up. He had battled through the anesthesia. He had been extubated. Sure, he sounded a bit hoarse and there was a slight gurgle in his throat, but this was good, right?
And then Elisa tried to feed him. And he screamed Bloody Murder. She's try to feed him, he'd cry, we'd spend 10 minutes calming him down, and then she'd try to feed him. He wasn't having any of it. I remembered when we did the first MRI that Sam had been given Tylenol - namely for any throat discomfort and headache. We asked if he would get it, and the nurse stared at me as if I was a moon rock. You know, Tylenol? Heard of it? She scurried off to get some and returned with some of the purple stuff. At first, she made it sound like we would have to get Sam to eat before he could be released. Suddenly, it felt like the nurse was in 5th gear. He's not eating? No problem, he's awake and that's enough! Hey, can you calm him down long enough for me to yank out his IV? Hold on one second, I just have to take this phone call from my husband! Oh, his IV is bleeding all over your husband's shirt? I'll take care of that...and make sure you treat that stain when you get home! It felt like we were pushed out the door. All I knew is that Sam seemed to be breathing a bit harder, had some gurgling that I thought was just some excess saliva, and that he would be fine. And for the most part, the rest of the day followed that logic. He ate a little. Next time, he ate a bit more. By 6:00pm, he'd had a good feeding and got his next syringe of Sildenafil. We went to bed, confident that a good night's sleep would make him all better. And when he woke at 2:30 (and had his best feeding), I was...dare I say...hopeful! And then it started.
Sam's oxygen saturations would dip when he'd cry. And when I say dip, I'm not talking about going from 98 to 92. His lowest reading was 77 (at least that I saw). Elisa made the executive decision to move Sam's bassinet into our master bathroom/walk-in closet to let us sleep. Sadly, all it did was transfer the beeping from one room to another. Sometime after 3:00, we tried to give him Tylenol but he ended up throwing it up (all over me...the joy of rapid warmth, followed by stinky cold. Brrr!). The congestion in his throat worsened. He wouldn't get comfortable. And for the rest of the night, we fell into a routine. 15-20 minutes of groaning noises emanating from the bathroom, followed by a crying fit, beeping monitor, and panicked parents. Elisa and I gave up the dream of sleep at about 5:30AM. It wasn't happening and we were really starting to get concerned. I thought the MRI and the general anesthesia would be the worst of it. I was very wrong. Sam had a very rough night, which meant Mom and Dad were even more exhausted as we headed into Sam's big appointment. I had hoped we would head in with only the worries of Sam's head. I now was worried about the head, his throat, his heart, his breathing, and his terribly crying and dropping saturations. It's never easy, is it?
Still, we got up and continued to watch Sam struggle with his saturations. We got to the point that I turned off the monitor, realizing that I was only finding worry (no comfort) in the incessant beeping. My Mom showed up to shuttle the kids off to school and Elisa and I took little Sam back to PCMC for the second time in two days. While waiting to get checked in for Dr. Brockmeyer, Sam had another crying fit. By the time we were in the waiting room, he had gone back to sleep but sounded as though he REALLY needed to clear his throat, but couldn't. And then, Dr. Brockmeyer entered the room, slapping us back to the reality of his head and the path forward.
I'll start off by saying that this entire section isn't bad news...on the contrary, I feel like we have more of a plan than we have before. But we started our talk with Brockmeyer with the knowledge that Sam's fistula has grown. Whereas the Cardio appointment was a big old "more of the same", Dr. Brockmeyer showed us that while the increase was small (and could be partially attributed to Sam's growth), the MRI clearly showed an increase and simply reminded us that this was something that would need to be fixed. If my biggest fear on Day One was that Sam would struggle coming out of the anesthesia, Day Two's worry was that we would be told that Sam's fistula was inoperable. Dr. Brockmeyer didn't insinuate it at all. In fact, he now had a plan that he was ready to enact.
I have found that many doctors have a sort of God complex. I actually understand why - they learn some of the most amazing skills that can turn someone's situation from death to a long life. If Brockmeyer had this complex, I wouldn't have been surprised to hear him plan out open brain surgery for little Sam. But this isn't Dr. Brockmeyer. His plan was more straightforward, plodding, and safe for Sam. And I'm grateful. So here's the plan.
Soon, we will add a new doctor to Sam's story. Dr. Brockmeyer is going to start consulting with Dr. Towskey, an Endovascular Surgeon at University of Utah Hospital. Our first course of action will be a review between the two doctors and a formulation of a plan to attempt to stop the fistula through embolization. This less invasive process involves a catheter in an artery in the groin, and a small path up through the carotid artery. Here, they will do an angiogram (releasing dye into the bloodstream and taking a series of pictures so they know the path of the blood and where they need to tackle the fistula). At first, I thought this meant two separate procedures and recoveries. I was pleasantly surprised to find out that the angiogram and embolization (probably coiling the feeders to the fistula closed) would be a 1-2 punch of a procedure. I was more pleasantly surprised to find out that the recovery time in hospital for embolization is a single day. Yes, I'll take that over 1-2 weeks!
Dr. Brockmeyer is hopeful that the embolization can take care of the fistula completely. But, he painted three scenarios that could result:
- Great - embolization coils off all feeders to the fistula, and the fistula deflates and shrinks. No surgery is required to remove the fistula, blood overload in the heart reduces, and Sam's heart repairs (with pulmonary hypertension hopefully fading into the sunset)
- OK - embolization works, but the Dr. runs out of dye. Apparently, you can only inject so much dye based on the patient's weight. In this scenario, Dr. Towskey would fix some of it, Sam would recover, and we'd repeat the whole thing again in 1-2 more sessions. The end result being the same, if not a bit more drawn out.
- BAD - embolization works partially, but Dr. Towskey determines that he can't get any more of it. He returned to Dr. Brockmeyer and the good Doctor takes over...finishing the eradication of Sam's fistula with open brain surgery
Either way, the plan is the less invasive embolization. I'll take that. In terms of timeframe, Dr. Brockmeyer is planning on consulting with Towskey on Friday. By early next week, we should get a call. The two doctors will consult on how to tackle the fistula, and then talk about when. If the risks are equal, Dr. Brockmeyer believes they could go in and fix it now. If they believe it is safer to wait a bit, we'll target January. Needeless to say, by the time the calendar switches to February 2014, Sam will have had his first (and hopefully last) brain surgery...even if it is only embolization.
I wish I could say that was the end of our day, but Dr. Brockmeyer had to ask about the gurgling. We told him that it started with the extubation and he looked well out of his comfort zone. Knowing he wasn't the heart/lung expert (again, I love a lack of God complex), he advised that we cross the hall and see if Dr. Doom was available for consult. So we did. Sure enough, his Nurse went and chased him down and we found ourselves in a Dr. Doom check up. I must go on record, however, and say that Dr. Doom is growing on me. Don't get me wrong, he'll be Dr. Doom for his horrific proclamation of impending doom on Sammy, but I have been impressed with the level of care he is providing. When we were waiting for Sam to get out of the MRI, Dr. Day stopped by and said hi. He went back and checked on Sam and gave us an update that things were going well. He said good luck to us in the hallway on the way out of Day One. And without an appointment, he took the time to examine Sam and see if the gurgling wasn't more problematic. It turns out that he thinks Sam needs a couple more days to recover, and that his vocal chords and esophagus are clearly raw and in pain, and they need to recover. Swollen vocal chords are probably causing the gurgling but we did end up with a prescription for Zantac, as some of the coughing could be a result of Acid Reflux that isn't resulting in full-on spit up.
So we headed out, but not before Dr. Day could play his one card of Dr. Doom - just to remind us that he's still in there. When we asked if he was okay, Dr. Day said "you can give it a day or two to see if he improves, or we can admit him into the hospital and they can try to make it better...but might not even be able to!" Thanks, Dr. Doom. I think we'll skip the voluntary inpatient hospital visit this time. But thanks for asking.
Sam screamed as we drove away from PCMC and Elisa and I still had pained worry lines etched across our faces. He slowly went to sleep, Elisa dropped me off at work, and I went back into normal. Yet, 15 minutes later, Elisa let me know that Sam wouldn't stop screaming, wouldn't eat, and had violently thrown up a new dose of Tylenol. I decided to work from home for the rest of the day, and arrived to three familiar noises: Sam crying, Sam gurgling, and a beeping monitor. Yep, we weren't out of the woods yet. After we got him calmed down, Elisa headed out to pick up her best friend from the airport (here for a weekend visit) and it was me, Sam, and my work computer. I was proud. I navigated a 30 minute work call, changed Sam 3 times, fixed his monitor so that it wasn't going off with every simple Sam kick or movement, put him to sleep in our baby swing, and got some work done. By the time Elisa arrived home, Sam was calm, ate his Sildenafil, and had a good feeding with Elisa. Yep, I'm the man. Let's ignore the fact that I was desperate for a stiff drink throughout the experience. I was determined to deliver a calmer Sam to my worried wife.
Throughout the rest of the day, we've fallen into a routine. A few hours of calm, a few really good feedings, and then a drop of medicine that makes him vomit all over the place. I'll end today's long story with the thankful words of Dr. Brockmeyer - no more MRIs for Sam. From his mouth, "we need to keep the wear and tear down on this little one". Yes, please. Because the wear and tear of MRI #2 is all over my shirt right now. And it stinks.
Both figuratively and literally.
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