Elisa wanted me to look, but the actual subject of her raising me from the bed to the ceiling was a spot of good news. It was a photo on her phone, sent by one of her friends that did work at Primary Children's and had stopped by to see Sam. It took me a minute to focus on the picture and contemplate what I was seeing. While Elisa's "Look!" had gotten my body to respond, my eyes apparently aren't attached to my ears. They were wanting to stay asleep. Sure enough, as I focused, I saw cute little Sam asleep. At first, I wasn't sure what I should be noticing, and I was slightly hesitant to say that to Elisa. Was this one of those hidden tests, like when she comes home from a haircut (without me knowing that she's gone) and waits to see if I notice? Or a new outfit that I haven't yet experienced when reviewing our credit card bill? And then my eyes settled on his nose. And the darned cannula. Oh Sam, still battling to stay around with that oxygen. 10 seconds after staring, it finally hit me. Yes, there was something different. Sam had a nasal cannula. A regular nasal cannula. Not a high flow one. He had to be down to 1 L or less of oxygen. This was improvement. It then hit me that we hadn't received a telephone call. He must have held his own.
Like a mental firework (probably not attached to Elisa's behind), the idea of Sam being on a regular cannula had invigorated Elisa. She was tearing around the house, getting ready. I privately wished I could send her a picture every morning to get her to move around the house (and get ready for the day) at a pace only a careless man could handle. This was great! I, on the other hand, clearly didn't get enough sleep after being awake for 24 hours. I barely made it to the shower, and not even hot water right in my face could shake away the cobwebs. After I turned off the shower, I think I sat there for 2 minutes before I realized that the next logical step was to dry off and get dressed. But we did get out of the house. I stopped at work to get my computer, because I didn't want to spend another day staring at a hospital wall, and we drove through more snow covered streets to arrive at PCMC and see our little boy.
Already knowing that he had a good night, it was easier to walk into the PICU this morning. As we rode up the elevator, I privately wondered if I would be nervous had I not seen the picture at the start of the day. We walked in and were greeted with the news that indeed Sam was down to 1L of oxygen, a low flow cannula, and had battled through the night really well. The evening nurse was just wrapping up her report, so it was an opportunity to thank her and to hear yet another person tell us that Sam was the cutest kid in PICU. Not necessarily the award you dream of putting on the refrigerator, but a nice compliment nonetheless. After Elisa fed him, we headed off to get some breakfast, confident that we wouldn't miss much (or any visitors). It felt like we were always waiting for the visitors to come around, and that wouldn't happen until the afternoon. When we arrived back, we had a waiting visitor - a PR representative from the hospital. In the throws of yesterday's fun (not), the Attending had asked if we would be willing to take a visit from Rep. Jim Matheson, who would be on tour. My delirium led to my agreement, and now we had to sign a consent form to let them take pictures that would "only be used for internal purposes!" After that business was complete, we went and saw Sam.
Of course, our luck would dictate that when we left for breakfast, both Dr. Day and Dr. Brockmeyer would come by. Were they waiting around the corner, anxiously hoping that we'd vacate the premises before they could swoop in and give their regards? It certainly felt like we had poor timing, or just bad luck. So we got Sam fed again and waited around. As we were wrapping up his feeding, we heard a knock on the door and were told that Rep. Matheson was ready for his photo shoot. Talk about awkward. In the process of answering some really surface/impersonal questions (sadly, I held my tongue and didn't inquire whether or not Matheson would ever actually be a Democrat in practice...), we also met the CEO of the hospital, and a couple "yes" people that nodded a lot. Matheson's first question was where we lived...when he found out we were in his district, he probably swallowed and wished that they had picked an out-of-state couple. Later, I voiced to Elisa that we must have been picked because they finally got some good looking parents in the NICU. Okay, not really. But, yes, really. He inquired about how long we'd been here, how old Sam was, and whether we stayed at the hospital. I got my single dig in at the woeful lack of parental support by stating that "it felt like a game of lottery trying to get a room here". The CEO promptly told Matheson that they really encouraged parents to go home and rest. I told them that Elisa and I had slept on a twin bed together. I was on a roll. A couple awkward photos later, the group vacated and we settled back into our waiting game.
No one else came. Nothing happened. I did some work while we waited, and then it felt like time to get some caffeine. I bid Elisa adieu, and headed up to the third floor to get some much needed coffee. While I made small talk with the barista (I'm guy smiley, after all) and somehow forgot that we drove a minivan (when she inquired about our snow vehicle, I went with the Venza. So sue me!), I got a call from Elisa. Everyone was there. It was time to get details. Of course it was. Because the last 2 hours of waiting wasn't the right time. I secretly wondered if my original hypothesis of them hiding around the corner might be true. When I arrived back at PICU, I met Dr. Tosky in passing, who said "I'll be right back". Wait, so I rushed back to have you leave? We got settled in and then the parade of Doctors came in. I kid a lot about the doctors, but I found myself overwhelmed. There was a lot of medical know how in the room. Dr. Tosky and his assistant started the party. They were followed by the attending and resident from the PICU. Our day nurse was there. Dr. Day and his Nursing Coordinator showed up next. And finally, Dr. Brockmeyer entered the room like the rock star that he is. After brief introductions, the floor was given to Dr. Tosky. Sam's embolization procedure would happen on Tuesday (yes, tomorrow). And there was much to discuss.
Dr. Tosky started with an explanation. This was going to be a difficult procedure, simply because of Sam's size. On an adult (or young child), the risk was much less. You were working with much larger vessels, and a stronger overall infrastructure. But the plan was to go into Sam's artery (femoral) in his groin, up into the brain, and then to start plugging feeders to the fistula. Before we got to any positives, though, with a tip of the cap, he went Dr. Doom. We heard about the risks. And yes, folks, buckle in. The risks are real (if rare). And scary.
The risks are:
- Let's start with the groin entry. Apparently, they will be dealing with an artery that is 1-2 millimeters big. In an adult, that vessel is 6-8 millimeters. We get 1-2 to work with. So there is risk immediately to that vessel and the corresponding leg.
- First, he mentioned that difficulties can arise that will lead to one leg being longer than they other. Mmmmmkay. Didn't need to be aware of that risk. Who knew that could be a rare side effect?
- Next (as we ran up the scary scale) was the chance that we could damage the artery (plug it) so much that Sam could lose his leg. Wonderful. We hadn't even gotten in his head and we could have a longer leg or lose the thing entirely. What's next, Doom Jr.?
- We proceeded up into the brain. There is a risk of hemorrhage.
- There is a risk of stroke.
- There is a risk of not being able to fix it all (which is very likely), leading to the possibility of 5-6-7 embolizations over Sam's life.
- Then there are the potential neurological problems. They aren't sure what the brain will do with a change of blood flow. While they don't expect problems, it could lead to neurological deficits and problems (even right after).
- Finally, the dye they use is heavy duty. They need to be very mindful of the amount they use, as too much can overwhelm the kidneys and send Sam into kidney failure
Scared? Worried? So were we. It was a lot to take in. In an effort to make Sam better, we were faced with physical, mental, and organ failure or problems. You knew how serious things were when the PICU attending piped in with a "okay, you've covered the risks. Do you want to also tell them that kids are cured from this?" Everyone laughed. I wanted to fist bump the guy. I will say that Dr. Tosky, as much as I kid, has nothing on Doom. He prefaced his comments with the "worse cast scenarios, even though they are very rare." In that context, I was at least ready. He also stated that he did a few of these per year, and that the result had shown to be very good. He put it well when he said "we wanted to wait until he was 4 months old because every gram he gains makes this easier. But we're at a point where we can't wait. We need to save his life." Indeed. Now for more positive things and the prognosis if we avoid the complications listed above.
The hope:
- Even if the expectation isn't to fix it all, it is the hope and desire that they can fix enough to get Sam out of the danger of heart failure. With that progress, the other embolizations could literally be drug out for years as Sam continues to grow and with every gram, the next procedure gets easier.
- They have seen success with "curing" kids like Sam. Anytime someone uses the word cure, I'm a fan. I'd even like your page on Facebook.
- They were all in it for the long haul. Brockmeyer stated that they were all involved and would be until this was resolved.
- We'd have the best - they did multiple similar procedures multiple times a year. We were in good hands.
- The doctor is supposed to go on vacation later this week - he personally rearranged his schedule to ensure Sam was taken care of.
- The process of healing truly begins tomorrow - something we have not been able to say since Sam arrived. From 9/11/13, the process had always been to limit the damage. Now, we had a chance to reverse course.
In a strange turn of events, Dr. Doom also seemed to his his stride. Either that, or Tosky playing the role of straight man made Dr. Day think he needed to find his beams of sunshine. In support of Sam, Dr. Day would be looking for an echo about 12 hours after the procedure, hopeful to see improvement. He would also look at an x-ray, hopeful to see a decrease in the size of Sam's heart. And then Dr. Day reminded us (see, this is what you missed from the blog that never was) that Sam had a small PDA between his heart and aorta. This was small, but he believed it was a little bigger due to the increased usage of Sildenafil. However, it could be contributing to Sam's heart problems and Dr. Day stood ready to fix that too if needed (possibly by catheter, but his preference is a small incision in the left chest, and then tying the hole closed. It was low risk and high benefit, and that's in our back pocket if we weren't seeing the progress that we fully hoped for with the start of fixing Sam's fistula.
After all of the doctors had left (sans Dr. Day), we sat and talked about a myriad of things - Sam getting better, taking the pressure off of his heart, fixing the PDA...all in an effort to save Sam. Finally, as the room got quiet again, Elisa started to cry. The tremendous risk washed over her, and Dr. Day's Nurse Coordinator came over and gave her a hug. It struck me how much we had just been educated and helped medically from a group of Doctors that probably made over $700,000 a year combined. And one of the "lowest" rung people in the room showed the greatest amount of humanity, realizing that across from Sam's crib was a frightened mother that had just heard that in the process of fixing her son, they could take his leg, hurt his brain, or cause a stroke. That woman would come back later and give Elisa her cell phone. She stated that she would come up and sit with us while Sam was in his procedure. Folks, I don't care what you think true medical care is - she showed us the most pure version of it. A human being treating a human being and the human beings that care for him. I'll never forget it.
The rest of the day has been a parade of close family, well wishes from distant relatives and friends, and a visit from a tremendous human being - one that realized that we're here staring at hospital walls. We got a care package of magazines, books, and the like. It was one of the most thoughtful gifts so far - because it spoke to where we are. It's similar to getting food when you get home from a week in the hospital and can't imagine finding the energy to cook a healthy meal for the family. Or Elisa's friend rushing around our house last night, doing dishes and emptying the garbage. That's love, folks.
Our day started (well, at least mine did) with a hair raising "Look!" that showed us hope in the face of doubt. Today, we heard about potential potholes on the road to Sam's recovery. But when I get down, scared, or panicked, the thought that goes through my head is "anything we have to deal with in the process of saving Sam is better than the alternative if we do nothing". Tomorrow's a big day. Tomorrow Sam starts the process of getting better.
And as my brother so eloquently put to me in a text - tomorrow is the day that "we truly start saving Sam". So let it be written. So let it be done. The road to Sam's cure starts tomorrow.
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