When we arrived for our Cardiology appointment on Monday, we thought that Sam was in full healing mode, and that the doctor would simply give us some medication to push him over the edge. Since then, Sam went to the Cardiac ICU. We were told he could/would die. He had an ultrasound. 2 echocardiograms. A MRI/MRA. We talked to a Genetics team. We met more doctors than I could count on my fingers and toes. And Sam's pressures had decreased. We also found out that the fistula in his brain was real, was serious, but was not something that they needed to tackle and fix right now - Sam needed to get older, better, and stronger before they dove into that deep pool.
As we waited for the rest of the crew - this time, the Cardiology team - I went over all of the information from the Neuro team, and I kept going back to the doctor's answer to one of our last questions. Elisa expressed her concern that we would be taking home a ticking time bomb. The doctor stated that the chances of rupture were very, very low. Like 4-5%. With the hypertension in check, Sam should be treated, not as a "glass doll", but as a regular baby boy. Okay, one on Viagra and with oxygen, but a baby boy nonetheless.
As I ruminated on the new news, the Cardiologist and her team entered. They had just consulted with the Neuro team and the Cardiologist felt that the Neuro team's approach to wait and see was reasonable. So we turned our attention to the pulmonary hypertension. The Sildenafil had brought Sam's pressure down from 85 to 50. The doctor was hoping for a bit more, even if they were more comfortable with where he was currently sitting. She was going to talk to Dr. Day about the potential of increasing the dosage of Sildenafil to see if they couldn't get some more results in Sam's pressures. But that became the central focus of all of Sam's treatment. Getting those pressures under control.
Thus, we set out on the plan of another echocardiogram scheduled for Friday, 10/4/13. The hope is that Sam's pressures continue to drop (if we got below 40, it would be a very big deal, as 20-30 is considered normal). If they do, they will start to explore how to get Sam home. The initial date mentioned was Friday. Elisa and I are hoping for sometime this weekend...unbelievably, about a week after he was released from his first hospital.
At this point, we are still so raw in our emotion. But we are comforted by the fact that there is a tremendous amount of hope about his prognosis, treatment, and long term obliteration of that darned fistula. And as I sit and write from Sam's hospital room at PCMC, I'm reminded of hope. And the gift that one nurse in CICU gave us.
Before we had found out about Sam's pressures - before the MRI results, but after he had come back from sedation, the nurse was talking about how she wanted Elisa to start giving Sam his Viagra and multivitamin in preparation from home. Elisa's response was "are we going to take him home?" The nurse looked at her as if she was crazy. "Yes, of course!" was her response. She had no basis to say that. She wasn't the attending physician and hadn't even heard what the MRI had revealed. Elisa teared up and the nurse walked up to her, took her hand, and said "you always cling to hope. It's all you have."
In my second blog post on Sam, I quoted the Shawshank Redemption and the quote that "hope is a good thing. Maybe the best of things. And no good thing ever dies." As we get through our fourth day of Sam's second unexpected journey, I keep learning that lesson. I have so many worries about Sam. I'm fearful of his life, both in the short term and long term. I'm worried about the impact on Elisa, the boys, and me. I'm still scared that we'll lose him. But I hope that we actually know what's going on now. I hope that the hypertension can be controlled long term. I hope that down the road, Sam's fistula will be obliterated. I'm hope that Sam can live a long, healthy, and normal life (if not infancy). I hope I can be strong for Elisa, and for Sam. I hope Sam outlives me.
I hope...
Brad
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