On September 30th, Elisa asked me why anniversaries like this were difficult. After all, it was just a day on the calendar. I told her that our bodies and minds don't remember the calendar day. They feel the memories, and relive the difficult parts of it as if we're getting a too cruel version of deja vu.
Such is life with a special kid. I've gotten used to this routine.
You see, when you look at Sam's journey as a bunch of calendar days, it seems manageable. After all, if you can get through the 5 or so horrible anniversaries, everything else can be forgotten. However, memories aren't tied to the calendar. They're tied to experiences. Every time we get a call from (801) 662-1000, my heart seizes. That's the telephone number from somewhere in PCMC. Each time we have to take Sam into a MRI (and have to say goodbye as he's put to sleep), I remember kissing him before the embolization and wondering if that was the last time I would see my baby boy.
So when the calendar showed that 6 months had passed since Sam's last MRI, the memories flooded back and I know that the simple task of walking the halls of Primary Children's would elicit and emotional response and trigger memories that I'd rather not have in my psyche.
Such is life with a special kid. I've gotten used to this routine.
Sam's MRI was scheduled for Wednesday, November 5th. On the 4th, I got the call from scheduling that told us we needed to be at Same Day Surgery at 8:00am. As I was getting off the phone with them, I mentioned that Sam was also supposed to have an echocardiogram, per Dr. Day's orders. When we had last visited the Cardiology team in September, we had avoided an echo because they prefer to not have to wrestle with toddlers during the procedure. It was much easier to handle the echo with Sam sedated, so we were going to get the 1-2 punch of news; cardiology and neurology; heart and head. The scheduler was slightly surprised by my request, so I patiently sat on hold while she reached out and tried to arrange for both the MRI and echocardiogram to get taken care of. Some 20 minutes later, she returned to inform me that both would happen. I got my feeding and drinking instructions, and moved on with my day.
1 hour later, the scheduler called back. Yes, they'd still do both, but we now needed to be at PCMC at 7:00am. Lucky us - that meant Sam's last feeding had to be at 3:30am, and he wouldn't get to eat again until the procedure was over. I broke the bad news to my mom, who watches the boys while we're at work (or exploring hospitals and such), and profusely apologized. This experience wouldn't just affect Sam. No, we all needed to get to experience an early wake up call to get Sam his MRI. Like good little soldiers, we got up at 3:15am and Elisa fed Sam (and I got him his medications). Ah, the medications. I'm sure I haven't blogged about this (or maybe I have...who remembers anything anymore?), but post-Dr. Day's last appointment, we were instructed to go from 3 doses of Sildenafil for Sam to 2 per day. We were very excited by that proposition, as the daily medications have always been daily reminders of Sam's condition. We followed Dr.'s orders, and Sam went down by a dose. Miraculously, over the next week, Sam's remaining retractions slowly disappeared. Perhaps it was coincidence, but I had a theory as the last remnants of Sam's breathing struggles went away. Sildenafil is designed to open the vessels. When Sam was in serious pulmonary hypertension, this was critical as it allowed his lungs to handle the higher load/volume. As the embolization had slowed that flow down, I wondered if the Sildenafil was opening those vessels up enough to almost overwhelm the little man. Whether that is true or not, it ended up being close timing that Sam's reduced Sildenafil dose went hand in hand with the retractions going away.
Back to early mornings and MRIs, we put Sam back to bed and hoped that we could get an hour or more of sleep before the day began. I didn't end up sleeping very much. The memories of previous MRIs were starting to surface. I didn't feel scared, but there were nerves in the stomach that pushed sleep just out of reach. 5:30 came and Elisa and I pulled ourselves out of bed. We'd spend the next hour rushing around the house, getting the kids awake and dressed, and preparing ourselves to go back to PCMC, and to go back to the memories.
We got out of the house only 5 minutes late, and headed back to the world of sick kids. I always hate and love sitting in the Same Day Surgery waiting room. I hate it because you see sick kids that, like Sam, are past the immediate dangers of their conditions. But more surgery is yet to be done. You see kids that are having all kinds of procedures, and your heart goes out to every parent sitting next to them. When something like this comes into your family, you join and unannounced and unpublicized club. You are one with these people, and know it as you make eye contact with them. In any other situation, I'd probably lower my eyes and stare at the floor. Here, in Same Day Surgery, I smiled whenever this happened. I wanted to convey that these people weren't alone; that I understood. I'm sure that wasn't conveyed, but at the very least, I wasn't averting my eyes to their sick children. I was embracing them as one of the unannounced and unpublicized club.
Such is life with a special kid. I'd gotten used to this routine.
Before we knew it, we were checked in and Sam was measured and weighed. While Sam used to be thin and frail, the constant eating (he is the human disposal) has made him a solid piece of human being. Clearing 22 lbs., I was immediately remembering the days between our PCMC visits. I stressed over every ounce gained (or not). Now, I worried that Sam would put us into the poor house considering how much food he was plowing through on a daily basis. We headed into one of the examination rooms and had the nurse's assistant collect Sam's vitals. We were thrilled to see readings of 99/100 on Sam's oxygen, now 6 months removed from the cannulas and tanks. He looked and sounded good, and I thankfully remembered times where that wasn't the case. Almost on cue, we looked out the door and saw the nurse that had put a halt to Sam's MRI 6 months ago. Do any blog readers remember her? Yeah, she was openly trying to negotiate with the doctor to not do the MRI, and somehow won that argument. Boo.
And then, we got to wait. Waiting isn't a big deal. When you're in hospitals, you kind of know that this is a part of the deal. You wait for doctors, nurses, drugs, exams, and procedures. You're waiting for rounds. You wait a bit more for a consultation. And then you wait for an appointment...every single time. No, they still haven't invented the drive-thru window for medical appointments. But waiting with a hungry and tired 13 month old is its own version of hell. Sam wanted to crawl, and overtime he did, he'd head for the exit (smart kid...he knows how un-fun these places are!). We tried books and our phones. We looked around the room for contraptions that would entertain him. But the little man just wanted to get on with things, and I didn't blame him. Many minutes later, the nurse (no, not the one that I was open to strangling) came in and did another examination on Sam. She was warm, and I remembered her helping us before the last MRI. It brought back memories of many of the wonderful people that have influenced Sam for the better - the dozens of nurses that took the time with us and with Sam, and to whom I'm very grateful for.
With Sam's vitals all checking out, we were escorted to waiting room #2, which at least had televisions. We chose a spot in the back corner, and just 10 minutes later, I regretted the decision. Just behind us, a boy (I would estimate to be 8-9 years old) was going to get surgery and he was having a conversation with the doctor. I was impressed and saddened that he was having an open conversation about his options on going to sleep (the mask vs. an IV). How do we get to the place where kids are educated and involved enough that they are negotiating treatment? I was working through thoughts that Sam might one day be that kid when the nurses brought some medication to help the boy get sleepy (before his chosen IV). He cried, not wanting to take the medication and afraid that he would throw up. It was sad and uncomfortable enough that Elisa and I moved over to the other side of the waiting room, hopeful that we could give the parents some space and privacy to help their son. I watched on the outskirts, as the boy got his IV and was consoled that the worst was over. I never said anything to his parents, but I again felt that kinship with them, and hoped that my encouraging smiles and support were enough, or at least meant something.
Soon enough, they were gone, and most of the waiting room cleared out. We were left with one other group - a mother and daughter, and I could tell the daughter was nervous. And then I was reminded about why PCMC is a wonderful place dealing with horrible situations. A woman came up and sat with the girl. She presented her with a doll - the same dolls that Lukas and Miles got when Sam was first in PCMC, and the very same ones that they both sleep with to date. She let the girl smell the various scents for the sleeping gas, and made her feel comfortable. Before we moved to another part of the waiting room, I saw the woman do it again with another child. I immediately wanted that job. Talk about being able to make an impact on those various parents that I mentioned before.
I was just getting to the point where I was annoyed at how long we had to wait when a doctor approached us. Adding to the litany of doctors we had worked with, Dr. Hannon would be the Anesthesiologist for Sam's MRI. While I didn't mind the man (he actually sat and talked to us for awhile), he took both of us back with some of the things that he said. "I've never met you, but I know you", he said. Apparently, everyone knew Sam. Yes, even in a world renowned children's hospital, Sam's condition and story are that unique. He was involved and following Sam's story back with the embolization. He never treated Sam, and stated that he probably got called onto a different child's case, but he told us how rare and unique Sam's story truly was. How he had been diagnosed, cared for, and nearly lost was something of a marvel to the doctors and nurses in PCMC.
He talked nicely, but I couldn't help but be saddened by this news. In the moment, I knew Sam's condition was rare. I saw 12 people in Sam's room before his embolization, and hadn't witnessed that with other kids, but to know that it had almost been a calendar year since Sam's embolization, and his story was still followed and known was just another reminder that Sam's odds (both of having the condition and surviving it) were astronomical. I remembered a conversation Elisa and I had in the midst of our second PCMC stay, where we coined Sam "one in a billion". It seemed that he truly was, even to this hospital that treats so many.
Such is life with a special kid. I'd gotten used to this routine.
Dr. Hannon informed us that we would have to wait 15 more minutes, as they were behind in Imaging, so Elisa and I moved to the other part of the waiting room and found a little play area with Finding Nemo playing. At the very least, it allowed Sam to be contained while crawling around. Sadly, that lasted about 5 minutes...he quickly discovered the television and so we moved around, trying to entertain a child that was now near a revolt due to being tired and hungry. Elisa resorted to pacing through the waiting room as new patients came and went. I wondered if perhaps the routine nature of the MRI was a blessing. Children with more serious immediate needs were getting served first, and since Sam had probably bounced someone from the schedule during his worst times, I was less upset about the waiting. Elisa had nearly gotten Sam to sleep when Dr. Hannon arrived and we headed downstairs. I laughed to myself when I saw that it was 9:30am - our original time for the MRI before they told us to come an hour earlier. That sure paid off!
I was appreciative to Dr. Hannon, as he was the first Anesthesiologist to let us stay with Sam until he was asleep. He told us that they'd start with the mask (flavored with cherry) and Sam would go to sleep. At that point, we could give him a kiss and they'd get the IV and the rest of it when we were out of the room. We laughed openly as Dr. Hannon gave us a mask (not connected) with the cherry scent already added. Sam licked his lips and tried to eat the cherry scent. Needless to say, I wasn't worried that he would fight the mask...he was too busy searching for the cherry candy hidden just out of his view (or so he thought). As they stared the actual gas, a nurse showed him Dinosaur Train on an iPad and Sam slowly relaxed. I looked down and he was calm and watching the show, and then 30 seconds later, they were laying him down as he was asleep. I leaned down and kissed his chest, telling him how much I loved him. I hated saying goodbye, even for a "routine" MRI. Elisa followed suit, and we walked out of the room. My heart had caught in my throat and I felt the need to cry...no, not out of worry for this procedure, but from the memories of all the previous goodbyes with less certain resolutions.
Such is life with a special kid. I'd gotten used to this routine.
Elisa and I immediately headed to Brews on 3rd - a little coffee stand that we'd gotten to know on previous visits to the hospital. We both were desperate for coffee/caffeine. With those in hand, we walked over and got a snack at University Hospital, and then headed back to the waiting room and the most uncomfortable chairs in the hospital - seriously, when you butt is falling asleep after 5 minutes, you know the chairs are rough. We waited for about 45 minutes before we were greeted by two very familiar visitors - Dr. Day and nurse Lynda. They knew we were in the hospital and wanted to check on Sam. Memories flooded back - from the times he was Dr. Doom to Lynda staying with us long after Sam's embolization. I felt such fondness for both of them. They said they would chat with us shortly, and disappeared to check on Sam.
A few minutes later, Dr. Day and Lynda were back. Sam was getting his echo and apparently the MRI had gone well. More importantly, Dr. Day had arrived at the right time - he saw some of the echo. In particular, Dr. Day was able to observe the scans of Sam's PDA. It was still very small, but he was more concerned about how the pressures looked. To remind you, they measure the pressures inside the heart and then just outside the PDA to get an idea of what the pressure is in the lungs. I still remember the horror of discovering that Sam's pressures were in the high 80s when we first met Dr. Day. Today, however, the news was so much better. The tech was getting readings around 40, which meant that the pressure lungs had come way down. The 40 reading was very near normal, actually. We were thrilled. I immediately shared with them that the retractions had disappeared with the lowered Sildenafil, which they both found fascinating (as opposed to just dismissing it from the amateur hour). We talked in depth about the Sildenafil and Dr. Day (was he EVER Dr. Doom?) stated that he wanted us to go down to 1 dose of Sildenafil per day, and if he tolerated that, we could take him off of it (and the Zantac) on Thanksgiving. That's right...if everything goes well during the month of November, Sam will be off of all medications on Thanksgiving Day. Well, I know what I'm going to be thankful for this year!
Moreover, Dr. Day said that once we got MRI results, and he had a chance to sit down and review the entire echocardiogram, we could explore closing Sam's PDA. Dr. Day stated that he was deciding things on the fly here, but he was very encouraged by Sam's size. He felt that he could go the catheter and fix the PDA without a worry of losing a key vessel in his leg. While he didn't make a decision in the moment, he said he would call us with next steps. I wasn't really paying attention. I had my eyes set on the best Thanksgiving morning of my life, and the thought that we could be celebrating Sam's last dose of Sildenafil since September 30, 2013.
Not long after, a nurse came and got us and we headed back to the recovery room. Sam was awake this time, which was new for him. The crankiness, however, wasn't anything new. He wasn't a happy camper and he had the raspiness in his throat. Earlier in the morning, we wondered if Sam was getting a cold (he had sneezed a few times), and hearing the raspy noises, I was now more convinced this was the case. But like muscle memory, the raspy noises took us back to Sam's worst MRI, a year before (actually...364 days before). He was probably starting to go into heart failure at that point, and post-MRI, he had a gurgle/rasp in his throat that didn't cease. It was a horrible sound - like Sam needed to clear his throat, but couldn't. I shook the memories away and focused on a healthier Sam that was trying to recover.
In a strange twist, when Sam wasn't ready to eat, he wanted Daddy. So, I stood and rocked my little man, trying to get him out of the fog and a bit happier. While I wasn't successful at making him happier, he did slowly come out of the fog. Finally, he stopped fighting the feeding Elisa was attempting to give him, and as he ate, he calmed. From when we first headed into recovery, it took about 45 minutes for Sam to go from cranky and unhappy to...well, Sam. Before we knew it, he was making small smiles at the nurse, and had even coughed up a big chunk of mucus which made his throat sound better (and the rasp less pronounced). We took another 15 minutes to have him recover a bit more, and then we found ourselves packing up and heading home.
By the time we got home, Sam was basically back to normal. We found later that afternoon that he truly was getting a cold as his nose started running like a faucet. But, really, a runny nose and a cold was small payment for the news we had just gotten. Sam was on track to be off medications by Thanksgiving. There was no amount of rain that could shut down this parade.
However, we were just getting started. As per our previous three scheduled MRIs, Day One was all about the MRI and Day Two was a visit to the Neurology team. I told you - matters of the heart and head.
Such is life with a special kid. I'd gotten used to this routine.
Thursday morning arrived with much less rush and fanfare than Wednesday had begun. Our appointment with Dr. Brockmeyer was scheduled for 11:00am, which allowed us to get Lukas and Miles to school (and Elisa and I a couple cups of required coffee). With only Sam in the house, we packed him up (waking him from a nap, sadly), and made the trek back to Primary Children's. While every appointment is a worry, Elisa and I didn't feel the same sense of concern that we had the day before. We kept telling each other that his head had to be in good shape if his heart was. After all, the only reason we knew about Sam's fistula at all was because of the strain it had put on his heart. We hoped that our intuition was right.
We arrived just a couple minutes late and got checked in. If Sam's Cardiology appointments are involved affairs, it would be fair to call his Neurology appointments "express". After checking in, we were ushered to an examination room and were joined by a nurse. She measured his head, entered it into the computer, played around with Sam until he was smiling broadly at her, and then left. I like express appointments.
Just 15 minutes later, 4 doctors entered the room. As they shuffled in, I was immediately reminded by Dr. Hannon from the day before ("Sam's famous...his case is so unique"). Joining Dr. Brockmeyer in the room was Dr. Tosky (yep, the famous savior of Sam) and two unnamed doctors, clearly there because of the unique case. Dr. Brockmeyer didn't waste time - in fact, he was starting to say we might not need such routine scans when I reminded him that Sam had just had a MRI the day before. Apparently, he was unaware. Ummm...okay?
The group of doctors brought up the scans and set the screen up to do a direct comparison of results from May vs. November. My first thought was that the fistula looked a bit smaller than it had in May. I thought my eyes were probably just playing tricks until Tosky verbalized the same thing. The doctors were, at the very least, in agreement that it was the same...and yes, it could be smaller. They were pleased. Elisa asked if Sam was doing well and Dr. Tosky said "yes, he's doing better than any of us could have expected". Wow.
Seizing on the opportunity of having all of these doctors staring at Sam (Tosky kept commenting on how great Sam looked), I asked them what the long term plan was for Sam. If you'll remember, the last time we were there, Brockmeyer had stated that they might never have to go do more to the fistula. At the time, that was comforting. As more time had passed, I worried about the potential of leaving a ticking time bomb in my son's head, with the chance of hemorrhaging. 6 months later, Brockmeyer and Tosky were fully aligned. Yes, we would eventually need to put an end to Sam's fistula, and yes, it would likely be through another embolization. But Sam's progress, growth, and the relative lack of change (or shrinking) of the fistula appeared to be giving us much more time than they had even hoped for. Dr. Tosky said that if things continued on this path, we could wait until Sam was 6, or even 10 years old. And as if all of my memories had been exhausted, I was reminded of Tosky previously stating that with every ounce and every year, his procedures got more safe, and less scary.
As if they could sense that we had been through a whirlwind of emotions, Dr. Brockmeyer gave us one final bit of good news. He didn't think we needed to have such routine MRIs, especially with how Sam had been coming along. He asked for a routine MRI for Sam in...a year. 365 days. Nothing before that.
After saying goodbye, Elisa and I packed up Sam and walked back through Primary Children's. In the span of two days, we'd found out three things. First, Sam's PDA could be fixed soon. Second, he'd be off Sildenafil (and all medications) by Thanksgiving (if things went well), and third, we wouldn't have to put Sam through a MRI for an entire year. It felt overwhelming. It didn't feel real. It felt like we were able to take a deep breath after being out of breath for months. Sam wasn't just getting better. Sam was beating the odds and writing his own story on what was now a "famous" case in the bowels of PCMC. Sam was telling the world that he's got this...that he'll emerge the victor.
Such is life with a special kid. But THIS is a routine I could get used to.
