I must admit that last night was a rough one. For the first time in 18 days, I had that overwhelming sense of dread. I think the last 2 1/2 weeks had been kind and cruel at the same time. On one hand, it was nice to not worry about the next set of news from a doctor, hospital, or nurse. We were free of the beeping, poking, prodding, and other invasive procedures. And wonderfully, we were at home, in our own bed, our own room, our own place. But it was cruel as well. Because our bodies and minds were left to themselves - to worry incessantly, sure, but without potential medical wallop like the special punch Dr. Doom had provided us just 3 weeks before. No, it was a safer place between Elisa, me, and Google. In the comfort (or discomfort) of our humble abode, we could search for truths on the internet and play doctor (sadly, not the kind that I would enjoy but would illicit an eye roll from Elisa) with Sam's medical condition. That false sense of security, however, was rocked with the Monday reality that we were heading towards another meeting with Dr. Day. And the similarities were disconcerting. Sure, we may have been home for 18 days this time (as opposed to 2 last time), but here we were, walking towards a Cardiology appointment after thinking things were getting better. Only this time, the lens and the expectations were quite different.
Leading up to today's appointment, you could see that we were trying to brace ourselves for a repeat performance of September 30th. Elisa asked me if we should pack a hospital bag in preparation. We arranged to have my Mom take the boys after school and plan on having them eat dinner at her house, all in the vein of preparation for the worst. I had warned my boss and employees of the appointment and that if I wasn't there on Wednesday, not to be surprised. Yes, we had started gearing ourselves up for another dose of Dr. Doom and an unexpected trek into some form of intensive care unit. Those around us probably felt pity but exasperation. Surely, Sam was thriving and we wouldn't be heading down this path again, right? But they patted our proverbial heads with understanding and told us good luck.
Sam's appointment was at 1:00pm, so we rushed around (I left work in preparation and Elisa spent her early afternoon letting Sam pee all over our couch and the floor...rookie!) getting prepared. I did feel like an old pro as we found parking near the Cardiology department, and then got sad that I knew the hospital well enough to know it's general layout. And we headed in. But we had work to do before Dr. Doom would grace us with his presence. First, we were sent to imaging for a couple snapshots with the x-ray machine. That included a self check-in, chatting with the administrative staff, and then finally getting the scans. Back we went to Cardiology. After a short sit down in the waiting room, we were escorted back to the Echocardiogram room. Sam got weighed, had a blood pressure check, and the tech performed the full scale echocardiogram. And then we were off to an examination room to soon be greeted by Dr. Day. We hadn't seen the doctor, and had already tallied almost 2 hours of Primary Children's fun.
First, a spot of good news. Sam's weight continues to be positive. It seems that we keep putting ourselves near an official medical scale every Tuesday, which is convenient when tracking weight gain. He's now up to 11 lb. 8 oz., which represents a 7 ounce gain in a week. Considering we are aiming for a .5-1 ounce gain a day, I'd say that's pretty much perfect progress. Hey, at least Dr. Doom couldn't wring his hands over that, right?
Dr. Doom finally entered to provide is review and diagnosis, and to be fair to the guy, this might be the most positive I've ever seen him. He was friendly and asked a lot of questions regarding Sam, including how we were holding up. Don't worry, he still had a couple Dr. Doom moments...they were just less pervasive than usual. Or maybe we had just girded our loins for bad news, and anything less than catastrophic would feel like Dr. Day was standing and applauding at little Sam. So let's get the Dr. Doom out of the way. Then we can talk about the lollipops and rainbows.
Dr. Doom, after praising Sam's weight gain, did drop a "is Dr. Moskowitz watching his head growth? Because that's just as important!" Suddenly, I started worrying about the circumference of Sam's head. He also added that, while he still believes that fixing the fistula in Sam's brain will eradicate the heart problem, "if it doesn't, there are other drugs for Sam and hopefully he won't have to be on oxygen or Sildenafil...for the rest of his life." There's the positive Dr. Doom I was looking for! In fact, the rest of Dr. Doom's story starts with the his first item of review - the chest x-ray. Sam's x-ray seems to be virtually unchanged from when we were first at Primary's. From my perspective, that's a neutral/slight positive development. No continued enlargement due to his heart getting tired and running down. No, it seems that the size of his heart is more due to the volume of blood it is having to pump. Dr. Doom did state that it was a good sign that it was unchanged, and then added a "but it also means that it isn't getting better by itself". Uhhhh...didn't you say that the brain fistula would have to be fixed before that would get better? He then told us that Sam appeared to still be breathing a bit hard and he could see the retractions. Thanks! We hadn't noticed. Hey, at least the guy's consistently gloomy. If you want a visual, just picture Eeyore without his tail. Hey, you'd be rain clouds too!
But let's get to the silver lining in Dr. Doom's delivery as well, because there were a litany of positives. First, pressures. The pressure in his heart (the right ventricle) appears to be holding steady from when he was in the hospital. That's a positive. We aren't seeing a return to the high pressures that got us admitted 3 weeks prior. But Dr. Day talked about a new pressure. Apparently, Sam still does have a small hole between the aorta and the pulmonary arteries. While it has mostly closed, it is still slightly open, most likely due to Sam's heart needing a little escape valve. One of the tests they do in the echocardiogram is measure the pressure in the aorta vs. the pressure in the pulmonary arteries. Unbeknownst to us, they have been monitoring this and Dr. Day was concerned that the aortic pressure was equal to the pulmonary artery pressure. Today, the pressure and flow through the small hole was at 25-30. To put it in perspective, the hope is that the pressure difference between the two is around 50. Last time, it was equal. Today, we're at 25-30. As Dr. Day stated, this is a definitive sign that the Sildenafil is doing it's job and taking pressure off of Sam's lungs.
We then turned our attention to the brain vs. heart debate, and his response to neurosurgery wanting to wait was remarkably pleasant. You can tell that he is worried about Sam's heart and lungs over the course of a long time. When I last spoke with him, he stated that for a child with a hole in his heart, they would wait 4-6 months to go in and fix the problem. He vehemently stated that he would be comfortable waiting until 4 months for Sam's brain to get fixed. He even went so far to say that if Dr. Brockmeyer wanted a little more time, there could be some re-evaluation. But based on Sam's current status, he was "very comfortable" waiting for Sam to be 4 months. He even stated that it would be easier on his recovery and the invasive nature of an embolization if they indeed went through a vessel in Sam's groin. Lollipops and rainbows, people. And puppies.
But probably the greatest slice of sunshine we got came from Sam and Dr. Day - on the subject of oxygen. When we went to the first appointment to see Dr. Day, they did an oxygen saturation test - with and without to see where Sam fell. On that dreadful day, Sam was at a 94 on oxygen (1/16 liter) and quickly dropped to 86 without. Today, Sam's on oxygen level was a nice 100. When we removed the oxygen, we were delighted to see that Sam's saturations only dropped to 93 and held steady. Hey, that wouldn't have even made the St. Mark's monitors beep! Dr. Day acknowledged it as well and said that it was a good sign that Sam didn't seem to be more labored without the oxygen. So while we are holding steady on 1/4 liter, he told Elisa that if she needed to run into a bank or grocery store, or give him a bath (the 20-30 minute variety), she could go ahead and do so WITHOUT oxygen. Maybe it's a small improvement to y'all, but to us, it's like confirmation that Santa Claus does indeed make toys at the North Pole. We were going to leave Dr. Doom's office with two realities. 1) Sam's outpatient visit actually remained an outpatient visit and 2) while we were staying on the oxygen/Sildenafil course, we could see a world without the cannula and oxygen on 24/7. Elisa mentioned being able to walk Lukas to the front of his school, instead of sending him down the catwalk. Hey, baby steps, but we'll take it.
For now, Sam's back home, still on oxygen, gearing up to increase his Sildenafil because he's packing on the pounds, and we're staring at potential surgery/embolization for Sam in the January timeframe. Dr. Day asked that we return for a check-up on early December. With a deep breath, we looked past Dr. Day's visit and set our sights on our next big activity. On November 6th...just over two weeks away, things get real with another MRI and further planning on how to tackle's Sam's fistula. Another IV. Another round of general anesthesia. And a Dr. Day test to see if Sam's heart is producing the dreaded protein that shows heart failure. Sounds like a gas, Dr. Doom.
Lollipops, rainbows, and puppies, people. Lollipops, rainbows, and puppies.
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