After we got the echocardiogram news, we sat in a quiet shock. A different kind of shock than we had experienced on Monday, to be sure. One that challenged us to think that Sam had a chance. We weren't sure what the chance entailed, or what the road before us was, but Sam was at least back to a pressure reading that sent him home from the NICU at Hospital #1. However, the biggest of the bigs still sat out there...what was going on with the AVM in Sam's head? Was it contributory or the actual cause of the hypertension? Could they fix it? Would they fix it? We had so much that we still didn't know.
Unfortunately, all we accomplished through Wednesday morning was a lot of sitting. Sam was back to eating well, with the last remnants of his sedation finally starting to fade. His coloring was excellent, and the only worry was the occasional tinge of blue on Sam's lips that the nurse felt was just Sam working a bit harder when he got upset. I noticed that with the increased hope came a group of fears from Elisa...how was his breathing? His color? His sneezing? Slowly, hope had started to creep back into our lives. Waiting was just the painful part.
First, we had heard that Neuro would be coming by on Tuesday night. Then, it was moved to Wednesday morning. Now, we were being told that they wouldn't be coming until the afternoon. As it neared 3:00pm, we inquired once more with the nurse. We had wanted to go see the boys, get showered, and get new clothes. The attending (Sal) said that they wouldn't be coming any time soon. We were also told that if Sam were going to be transferred, it wouldn't happen for awhile - maybe not even today because the upstairs unit didn't even have room yet. So Elisa and I set off from the hospital and saw the boys. Just seeing those smiling faces seemed to warm our hearts. And then, we got a telephone call.
Sam had been moved. He was now in the Children's Surgical Unit (what did that mean? Was he having surgery? Was that just the natural progression from CICU?), and we could find him in room 3079 when we got back. They also stated that Neuro had still not shown up. Elisa and I looked at each other. Sam wasn't in an Intensive Care Unit - the first time (outside of his two days home) that he wasn't in the most critical care of a hospital. Could it be that they felt Sam was improving enough to...actually start considering going home? We packed up our things, said goodbye to the boys for the third straight night, and headed back to the hospital. It took us a minute to find his room. And we were immediately thankful for the change of scenery. His room had a window. It had a couch that one of the parents could sleep in. The room was equipped with a bathroom, a television, and as I read about the room in their parent manual, I realized that comments like "you're here because your child is getting better" and "we will be preparing you for discharge" were commonplace in our new location. Then again, we now had to be greeted with a new group of nurses, doctors, and attendings...poking, prodding, and getting to know our son.
Ironically, when we went home, we were promised that Sam wouldn't move and Neuro wouldn't come. When we arrived, we were first informed that a team of 3 Neuro residents had stopped by not 10 minutes before. They had done a quick assessment of Sam and had told the nurse that they would be back in the morning. One more day before trying to get answers to Sam's condition. One more night of waiting. It wasn't all bad news, though. We also found out that they were trying to set Sam up to be going home, but the combination of Neuro's findings and Cardio's approach would be considered before we could see that path. With that, Elisa and I grabbed some dinner, we settled in (that's when I started writing again), and I slept on a pad on the floor while Elisa slept on the couch. Was it comfortable? No. But it was better than ICU. We were in Sam's room, meaning we only had to go pick him up to feed him. We could hear his breathing and cooing.
Then again, we also got reminders that we were in a children's hospital. On two separate occasions, the boy in the room next to Sam was in pain. He wailed out. He asked for his mom. He begged and pleaded and cried. It was cringeworthy - not because we were heartless, but because it put in perspective the pain that children have to endure. In many ways, we were lucky that Sam was an infant. We didn't have to hear his wails of pain. He just breathes hard. He sleeps. He arches when he doesn't want more medicine. He cries when he's hungry. But he doesn't call for mommy. It was one of the most painful sounds I've heard through this journey. I wanted it to stop, so that I could stop my head from hearing the pain and thinking that Sam could be feeling similar things, unable to voice it to his parents.
We awoke on Thursday morning, ready for the day...more than anything, ready to hear. The three Neuro residents returned at 7:00am. They did another quick review of Sam and let us know that their initial assessment was that they wouldn't be doing something immediately on his head...but they weren't the experts. They would be bringing the attending neurosurgeon back before 9:00am. So we waited again. Finally, at about 8:45am, the team of neurosurgeons arrived. And before we knew it, Sam's AVM became an AVF. And we started to understand his condition, the realities, positives, and negatives of it.
The chief neurosurgeon believes that Sam has a fistula in his brain, not an AVM. Let me say that they are both very serious. This isn't a story where we say it is a miracle and suddenly his prognosis is great. It's not. It's just different. When we asked if it was better to have one or the other, the doctor said that they were just different, and it was like comparing apples to oranges. As he described it, though, a fistula is where there is a hole in the artery - in Sam's case, two or three feeders or holes - that lead to a sac. This is the fistula. The sac then empties into a vein. It's completely unnecessary and is an abnormality. As the earlier group of residents said, however, it had two veins draining it, which is good in the hope that it won't rupture or hemorrhage.
This is something that Sam will have to get taken care of in his life. Many people that are asymptomatic don't even realize that this is in their brain, and while it is more common of things found in the brain, they only see 1-2 cases like Sam's every couple years. It's the rare. We won the worst lottery in the history of lotteries. And while it will need to be fixed, their preference is to watch and wait before doing so. First, Sam is 3 weeks old. And every day that he is older makes the procedure, healing, and prognosis better. They don't want to have to tackle the fistula right now unless they have to. But what does that mean?
Things that would cause immediate intervention are: 1) the fistula grows, changes, or gets bigger. 2) Sam's heart started to show signs of failure. 3) Sam isn't growing/thriving. 4) They can't keep the pressure down in Sam's heart, or it requires more medication to keep his heart/lungs at a lower pressure. If any of those things happen, they would want to immediately move forward on an angiogram, which includes putting dye in the vessels and taking pictures of his brain, to see the flow, arteries, veins, and to plan their attack. He indicated, however, that doing so on such a young child is a very challenging proposition.
I asked if they had a target age in mind - 6 months, 1 year, 3 years, 5 years, 10 years? The doctor's reply was "I'll take any of those." Clearly, they seem less worried about figuring out how to tackle the fistula. They're more worried about tackling it with such a young, weak patient. Sam needs to grow, get stronger, and prepare to face major surgery. Which is what this would entail. The fistula can be tackled in two major ways. First is open surgery. Yep, opening his head and directly removing it from his brain. They would clamp the arteries, clamp the vein, and then wait for the fistula to deflate. Once that would happen, the fistula would be removed and the blood flow would cease to irregularly flow. Second is less invasive, but potentially harder to do on a younger child. That is embolization, where they would take a cath through his arteries and plug or coil the feeders. With the blood flow stopped, the fistula would shrink and stop functioning. Either is serious. Either is an option.
Elisa openly asked if they could fix it. The doctor didn't hesitate...the answer was yes. He wanted to consult with some peers and they could do the angio now, but since they didn't want to tackle it yet, he really didn't see a need to do it yet. His next step is to have Sam get another MRI within the next month and to see if the fistula has changed or grown. If it has, they move on it. If not, they can keep watching it (at perhaps a slower pace). We brought up the question of the pulmonary hypertension and the doctor indicated that the goal is to manage that and keep his pressures down so they they can buy Sam time. The longer he holds on without the need for intervention, the easier and better it will be when they tackle it.
With that, the neurosurgery team vacated the premises. And we sat back. Finally, we started to see the picture of Sam's condition. And it was a mixed bag...but it was full of reality. Sam had a serious condition. But the prognosis that we had received on Monday didn't seem to be coming to pass. There was hope...delayed, undefined, but longterm...fixable hope.
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