You'll have to forgive me. The whirlwind of getting Sam home and immediately heading into Luke's 7th birthday, family emergencies, and Christmas has had a severe effect on my blogging ability. It was only today that I realized how I had left most of you hanging - in the midst of our hospital festivities, many of you are only to the point of knowing that Sam was extubated and trying to get control of his body and heart on his own. Much took place after that. Some still scary. Much of it was hopeful. A portion was downright hilarious and frightening at the same time. But Sam's story still needs to be told. Thus, we jump back into our Primary's Hospital visit #2.
We had left the hospital the night before, worried about Sam's fever and sad that we wouldn't have a nightly visitor at the hospital to afford pictures and updates for Elisa at midnight and 4:00am. We'd be going into the next day blind, and I was struck by how difficult a blind intro really was. There was a comfort to know that Sam was okay before we got there. We even had visual proof that he was hanging tough. While the logical part of my brain knew that we would have received a telephone call if something was seriously wrong, the emotional side of the brain plays greater tricks. What if something happened, but it just didn't rise to the level of a phone call? What if they were worried but wanted to tell us in person? Could he have taken a neurological step backwards while we slept? Yes, when you're a parent you live in this world. When your child is sick, your mind is dominated by the thoughts and you can't escape.
As we got to the hospital, however, it was quickly apparent that the logical part of my brain was right and there was nothing to worry about over the long evening. We found a hungry, crying boy when we arrived. He had a good night...he fought the bottle initially but then gave in. He was alert at times, very cranky when hungry, but otherwise was looking good. They seemed to be pleased with his medical progress as well, as Sam's fever had fully faded over the evening and everyone agreed that it was just a reaction to surgery. With the fear of infection out of our minds for the moment, we turned our attention to the parental review of Sam. Yes, the fever was gone and he was eating well. But Elisa and I both started to worry about a lack of smiles. Was there a hidden neurological problem that they hadn't yet found as a result of his surgery? We both talked incessantly to the little one, and smiled broadly (even though we still wanted to plug our noses at the smell of the dye). Still, no smiles that morning. It was now a worry at the forefront of our minds. Was Sam's mind going to make it through?
We sat around, trying to get Sam to smile when the neuro team stopped by for their morning check up. One of the residents felt the top of Sam's head and commented that the pressures and pulsating seemed less. I wasn't even aware that you could feel the pulsating, but the fact that he thought there was improvement was a good sign. He stated that the goal would be to check the heart and go from there. Our nurse filled in the rest. First, we would be moving to our fourth room of the visit (I was feeling well enough to joke that we would be posting Expedia reviews of our accommodations), and then we would get an echo. Depending on the results of the echo, they would look to start reducing heart medications.
As the doctors and nurses vacated our room and we moved to our new accommodations (which seemed to be getting worse and worse...which I hoped meant that we just weren't in as serious of a situation as before). We didn't have a neighbor, but this was the first room that was built to house two, separated by a small curtain. I wondered if we would keep our private home, or if we would get a new child next to us. I also wondered what it would be like to hear the beeping, parents, and prognosis of a child that wasn't mine. But I'd cross that bridge when I came to it, right? For now, it was back to looking, talking, and smiling at Sam. I wasn't getting the slightest bit of reaction out of the boy. But I was just as pleased to hear and see that Elisa had coaxed a smile out of Sam. It was brief, it was small, but it was real. And it helped push another little worry a bit farther back in our minds. Sam, by all accounts, was trying to heal.
If we were pleased with what was coming from his face and mouth, we were equally horrified at what was coming out of the other end. Whereas the day before, Elisa and I had smelled the dye from Sam's sweating and breath, today we got to experience the "scentsation" as Sam's body started to really process the dye. The result was blackish poop that smelled...well, as Elisa would say...like ass. Man, was it bad. I stick by my previous assertion that it was bad Chinese food smell, but when you put it into the context of what as in a diaper, that made the whole food thing worse. It was bad. Plug your nose bad. Consider never eating Chinese food again bad. And it just kept coming. It seemed that Sam had really started to process the stuff, and we were finding that he was pooping every hour or so. Yum. I was, at least, comforted that Elisa's "it smells like ass" comment now seemed timely and appropriate.
As we sat around, waiting for the echo technician to come in, I couldn't help but notice the progress in Sam's "rates" on the monitor. If you've never been in a hospital, you're typically watching four measurements. 3 constant, 1 periodic. The periodic one is blood pressure, usually set to test every hour. The other three, in hues of green, yellow, and blue, are the greater cause of beeps and worry. Green is the heart rate, and before Sam's surgery, it had been hovering in the 160-170 range. Yellow represented Sam's respirations - how many per minute. A typical infant was in the 30-60 range. Sam was consistently in the 50--70 range (and this was a big cause of beeps and alerts). Finally, blue showed us oxygen saturation. When he was admitted, the saturations were in the 80s. I give you these numbers as context. As I sat, waiting for the echo, I marveled at his numbers. Green...his heart rate was ranging from 95-120. Yellow...his respirations were anywhere from 20-40. Blue...his oxygen saturations were always between 96-100. At the moment, I snapped a picture of 103, 30, and 100. It was beautiful. And I was, at the moment, both amazed that the surgery had done so much good and guilt ridden that Sam had been so bad before we got him the surgery. I know...we didn't do anything wrong, but man he was struggling and we had just "accepted" so many of his symptoms as "our normal".
After taking the picture, I turned and saw the echo tech walking into the room. This was the third echo from this particular tech (which puts in perspective just how many we've had when we start having return techs). She took 15 minutes setting up the monitor and getting ready to work. Sam was in a deep sleep, so I was excited to see the results from a very calm baby. And then, 5 minutes in, she got a call. They had an emergency echo in another part of the ICU, and she was the lucky technician. 5 minutes later, Sam wasn't getting his echo and the technician was out of our room. It felt cruel. So close to start seeing results, yet now we would have to wait longer. Elisa reminded me that Sam had once been that emergency echo patient. It made me feel more guilty that I was being selfishly impatient. I love my wife - she has a way of pointing something out that I'm too blind to sometimes see. So Elisa and I settled in, and watched Sam. Elisa had visitors come from her work and went to chat with them, which only gave me time to hold Sam in a relatively quiet room. It was bliss. As I was the day before, I continued to be amazed that Sam wasn't bobbing nearly as much as before the surgery. Hope swelled inside me.
I was alone when Dr. Brockmeyer stopped by. I hadn't seen him since the surgery, but was curious to see what his temperament would be. If anything, he was less excited and pleased than the rest of the group had been. He cautioned me again that we were in this for the long haul and that Sam had a long way to go. I mentioned that a doctor earlier said he felt less pulsating in his head, and he was a bit dismissive of it, saying that it wasn't an accurate way to assess, and the echo would be the only real way to look at the progress he had made. He did say that it seemed like the first surgery had done some good, and that it was a good hope to wait as much as 6 months until the next procedure. But his visit was a reminder that doctors are all very different - and that their view of Sam, doomsday from everyone before, was now a mixed bag of what had been accomplished and what was still to come for him.
By the time Elisa had returned, so had the echo tech. This time, Sam was awake and fidgety. I was immediately worried that the test would show higher results, as he was a bit all over the place...still a good boy, but you knew it had to make the test a bit harder for the technician. As the echo proceeded, I realized just how little I still understood what was happening on the screen. It seemed liked the did something different every time, so it was hard to know if I was seeing something good or bad. I was attuned to when the technician seemed to focus on something more heavily that in previous tests. And this time, she seemed to spend a lot of time on the aorta. It brought back a new host of worries - did she see something? Was there a problem? But the bigger problem with a tech is that you get nothing from them. No words or diagnosis. Just silence in testing. So you watch their faces to see if something flashes. Elisa reminded me that when they found something on the initial ultrasound that was concerning (way back during PCMC visit #1), the tech brought in reinforcements to look. This tech did not, but it made us worry. The last thing we could handle, at this point, was news of a new heart problem.
By the time rounds had made its way to our room, we were reminded, once again, just how much was riding on this echocardiogram. From the doctor's perspective, we would take two courses of action depending on the results. If the results were poor, the heart medications would stay on and so would we at PCMC. If the results were promising, we would attempt to reduce the heart medications and start planning to move us to a regular hospital room. While the breathing, rates, and overall demeanor of Sam gave me hope, the emotional side of me just saw more time in the hospital. I hoped our worries about the aorta would prove to be unfounded. I was grateful that one doctor excused another from rounds to go find out what the echo showed. At least we wouldn't have to wait for a day to get results on Sam's heart. Before rounds ended, we did get a spot of good (and more hopeful) news. They had tested the protein in Sam's blood again (it was 1120 when admitted), and it had dropped to 941. I read up on the test that it takes a good amount of time for that protein to reduce, even if treatments are working, but I was pleased that we were back on a downward trend, as opposed to heading in the wrong direction or staying high above 1000.
As we waited for word from Cardiology, our regular nurse for the day informed us of the time crunch we were now on as we awaited results. In order to wean off of heart medications, they needed 6 hours to cut it off before the medication would work itself out of Sam's system and we would see how he was holding up. If we didn't hear on the echo (and cut down the meds) by noon, we wouldn't be moving from the ICU until at least tomorrow. Elisa and I turned our attention from Sam to the clock. Tick tock, we got closer to noon. And then, with 5 minutes to spare, we got a visit from one of the doctor's in Sam's rounds. No cardio visit yet, but she had initial results. We braced ourselves for the news.
The good news was that the echo results were positive. Sam's right ventricle function had returned to normal, clearly showing that either the heart medications or Sam's surgery was doing its job. We breathed a sigh of relief, knowing that the direction was altogether positive. We were a bit disappointed, however, to hear that we wouldn't be leaving ICU. Instead of cutting the heart medications, the cardio team wanted to wean. So we'd spend 12:00pm - 6:00pm cutting the drugs in half, and then from 6:00pm - 12:00am to have Sam off of the stuff. Only after midnight would Sam's blood pressure tests tell us if he was holding on his own. Apparently, if his blood pressures dropped, it would be a sign that it was heart meds, not his surgery, that was helping him the most. Normal blood pressure readings after the medications were out of his system would indicate that Sam was continuing to hold his own. I took the good echo and was content. But the impatient part of me wanted to move floors. I did the math in my head, and I saw one more day in ICU, maybe 2 in a regular room...and we'd be there for over a week.
But the weaning did commence. Sam's melrinone was reduced from .5 to .25. We'd sit and wait for 6 hours to see if things were continuing to progress. And at 6:00pm, they'd shut the melrinone off. I thought that would be the end of the story for the day, but we seemed to be only getting underway. First, we got a visit from Dr. Doom's cardiology nurse. She had seen the echo results and she was encouraged (although she stated 3 times that "she wasn't the doctor". She noticed the improved retractions on Sam and said that the initial echo had indeed shown that the right ventricle was working normally. I was, for the millionth time, struck at the humanity in this woman. Where Brockmeyer seemed to businesslike, and Dr. Doom is always the grim reaper, Linda, his nurse, was just warmth. She connected with Elisa as a mother, not as a patient. It was wonderful to feel. It was needed.
As we started to near 6:00pm, Elisa and I heard a lot of movement from behind the curtain (remember...this room was for two). Clearly, we would be getting a neighbor. And indeed, we did. It was a younger couple, clearly with their first child and clearly built to annoy the hell out of us. At first, they seemed friendly enough. We shared stories about our babies...they had an 11 day old that was struggling to eat/breath and they were still in diagnosis mode (in fact, they started in the ICU, moved to a regular floor, and had been sent back down). We even talked about grabbing some food later on. Unfortunately, that's where the lack of annoyance really ended.
I was a little iffy on the husband...he seemed overly friendly, and he proved it as a member of the clergy (or some religious affiliation stopped by). I was holding Sam, trying to mind my own business, when I realized that having a neighbor and only a curtain to separate us would mean I couldn't NOT listen. The husband was giving the clergy man the run down of his daughter's condition when he said something that made me laugh out loud. Only a direct quote can really convey the...special nature of his delivery.
"So, a little information about my wife and I. Spoiler alert! We happen to both be musically inclined and when my wife was in the throws of labor and it reached its peak, my wife started spontaneously singing. Now, we sing that song to her all the time and have decided that this is her theme song."
On cue, the wife started singing to the baby, I kid you not. She was singing softly, so it took a moment to place the song, but then I realized just how strange this song would seem in July. Now, it perfectly fit. In August, I wondered. She was singing Silent Night. Was this just because of the coming holidays? Oh no. The husband reinforced that this was their baby's theme song. Ummm...spoiler alert.
Back on Sam, however, through the singing and "sharing" of our neighbors, we finally heard more from Cardiology and were met with sweet news that helped us deal with the fact that we were still in ICU. Cardiology was very encouraged by the echo results and we could cut the melrinone at 6:00pm. We would need the evening to make sure Sam was holding his own, but if he did, we would be transferred to a regular room, or better yet, we would be discharged straight from the ICU. As soon as tomorrow. Suddenly, a night in the ICU with the whole "one nurse to one kid" didn't seem so bad. We could go home tomorrow. WE COULD GO HOME TOMORROW.
6:00pm came and went, and Sam was indeed taken off the Melrinone. With nothing left to do but sit and worry about what would happen at midnight, Elisa and I spent a little more time with Sam and got ready to go home (hopefully, for one last night). As our neighbor sang her 4th round of Silent Night, the phone rang and Elisa chatted with Dr. Day. As Elisa would later tweet (or twitter...it is still up for discussion), Dr. Doomy was not so gloomy. He had looked at the echo results and he even believed that Sam's lung pressures had reduced a bit. It was good news all around.
Elisa and I kissed Sam and we walked out of the ICU. We would head home for some much needed sleep, hopeful that Sam would make it through the night with good blood pressure readings, and more hopeful that our second visit might be over as soon as the next day.
Spoiler alert. I quietly hummed "Silent Night" as we rode the elevator. Hey, if you'd heard it 7 times in the span of an afternoon, it would be stuck in your head too.
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