One of our favorite nurses throughout this entire ordeal has been Gail, a wonderful and caring woman that we had the privilege of working with for two of the three days in PCMC CICU. She was the one that scoffed at Elisa's question about going home. She was the one who told us that we had to continue to hope. But she also had a couple other "Gail-isms" as I'll call them. Two in particular that at least help.
The first was about the doctors. We had shared with her our experience with Dr. Day - first, his grim proclamation, and second, his more hopeful view of the MRI - she laughed and told us to be prepared for more roller coasters. She was silent for a minute - long enough that I wondered if she meant Sam would get more bad news before good news. But then, she continued. She said that every single doctor has an opinion, and oftentimes, those opinions clash. We will get 17 different opinions - and they will all think that their opinion is the right one. Interesting to know that much of our roller coaster has to do with a doctor's opinion, and not medical fact. Then again, Sam is atypical. I think every doctor, nurse, and the like is trying to figure out the puzzle that is Mr. Sam.
Her second Gail-ism was more simple...it was speaking out loud one of the realities of the hospital setting. While you don't often love the news that you hear when you're meeting with doctors, nor do you get excited about the numerous tests that must be run, that's not the hardest part. No, it's the time in between the tests and the news. The waiting. Because you look for truth in the waiting; answers in the waiting. And there are none. Gail, just acknowledging how difficult the waiting is, made it a bit easier. At least, I think of her words every time we wait.
And after so much excitement (and no, not the good kind) over Monday, Tuesday, and Wednesday, Thursday's events were rather quiet. No tests. No bad news. Just sitting and waiting. And I handled it pretty well. At least, for a moment, I didn't have the never ending stomachache. That's not to say the day wasn't hard. It was. Writing the blog - reliving some of the worst days of our lives (thus far) was enough to make me feel down and depressed. It wasn't until later in the evening that the hope started to well up inside of me again. It got me through the evening. It got me through the night. It didn't hurt that Sam had two of his best feedings to date overnight (24 and 19 minutes). A little before 7:00am, though, the waiting was broken by a new test. They were ready for Sam's seventh echocardiogram. The nerves came back. The worries came back. The hope slightly faded for me (I think Elisa's stronger...she believes!). We went down with him and I couldn't bring myself to even look at the echo screen as she went about her business. Elisa could - looking for any hope of percentages or sign of improvement. Sadly, all we got was another person's comment that Sam breathes fast. Thanks. I think we've noticed.
When we got back to the room, though, we entered another waiting stage. This one felt more significant. Would Sam be able to come home again, or would we be hanging out, worried about increased pressures, and bracing for yet another echocardiogram? I didn't want to eat. I was worried that the results would be bad. Elisa had an aire of confidence, and I'll tell you this - I will ALWAYS trust her intuition from here on out. It has always been right through this. During pregnancy, she felt something was wrong. That first morning with Sam, she knew something was off. After being released from St. Mark's, she believed more would be found. Only when she said (after the MRI and Dr. Day's call) that she felt like that feeling was fading did I start to relax a bit. She's a soothsayer. She's brilliant. She's my rock. Sorry, folks. But I'm staking claim right now that I have the best woman in the world by my side. By a mile.
After feeding Sam, Elisa and I tried to start eating some breakfast - Elisa was more successful than I was - the cardio team entered the room. I took it as a good sign that they seemed to be joking a bit. We are constantly seeing 7-8 people in a room when rounds are underway, so we had a good laugh when one of the residents came in saying that a huge group was on the way...only to have 3 people actually enter the room. So, was Sam's seventh echocardiogram a lucky one? As I looked back, echo 1 & 2 sucked. 3 & 4 rocked. 5 REALLY sucked. And 6 was good. I was worried about a relapse. But, again, I need to trust Elisa's intuition. Because the news wasn't bad.
Sam's pressures were about the same. That's good. It means he's maintaining. That doesn't mean he's out of the woods. He still has the fistula. He still has the pulmonary hypertension. But he's stable at an acceptable pressure. Suddenly, the conversation moved from his results to prepping for discharge. The team was already hard at work at getting the Sildenafil for us at home. He'll continue on the same dose, but they are making it a bit easier for us by only making it a 3 times a day drug. We also alerted them that we needed a different travel set-up for his oxygen, as his travel case currently only delivers 1/16 liter of oxygen and Sam will be going home on 1/4 liter. They said they would work on that as well.
In terms of follow-up, Dr. Day was amenable to the Neuro plan of wait and see, but this approach requires very close monitoring of Sam's heart and pulmonary hypertension. The hope is that it continues to maintain, if not improve as the oxygen and Sildenafil continue to take hold. They are worried about it getting worse, however. If it does, they will push on Neuro to move forward at a much quicker pace. So we will have our first follow-up appointment with Dr. Day (post-PCMC) in about a week. Neuro wants an MRI done on November 6th, with an appointment to review the findings on November 7th.
Elisa asked "so if we get his drugs, will he be going home then?" One of the doctors said "don't worry. We will get everything worked out. You are going home today". Elisa's reaction? "For real?" We all laughed. Yes, for real. For the second time in his life, Sam is coming home. Only this time, it is with a more definitive diagnosis, a plan for treatment, and a longterm outlook to get Sam better. It's a scarier trip home, to be sure. But a more solid one.
And for the planner in me, it's a planned one with a certain goal - eventual cure. Sam being as better as he can be. And considering the prognosis we received on Monday, I'll take this and run from the building (with Sam in toe, of course).
Brad
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