I posted on Facebook about my new Twitter handle (@SuperSamUpdates). Within 30 minutes, I had 20 followers. By the end of the day, I think I was over 50. And I started tweeting. I kept people updated. I vented my own fears and frustrations. I even found unique times to be sarcastic or try to be funny. As we sat in the waiting room, my Dad, brother, and wife had created Twitter handles. And then and there...in the waiting room while Sam was getting his procedure, the Twitter War between Elisa and Brad began. For those of you familiar with Twitter, you will know that sending out a message is called "tweeting". The actual message is a "tweet". But this didn't make sense to Elisa. She took the literally name of "Twitter", and dubbed writing any messages to be "twittering". The message was called a "twitter". Yes, two days later, we found ourselves sitting at the Starbucks inside University Hospital, having a Facebook/Twitter war about tweets vs. twittering. Elisa also seemed to be vehemently against the idea of hashtags. When I tried to explain that it was a searchable function within Twitter, and a way to make further points in few characters, she scoffed. The only hashtag she seemed to understand and embrace was when I turned her comment about her drink into a classic #ittasteslikeass.
The day we were to be released from Primary's (during our second visit), however, Elisa (the Twitter rookie), struck tweeting and hashtag gold. After a visit from Dr. Doom, my phone beeped, alerting me that I had a new tweet from the Mrs. I opened it and immediately enjoyed her handiwork. The hashtag stared at me from my iphone. I laughed out loud at how perfect it was.
#DrDoomyNotSoGloomy
That was the last time we had seen or heard from Dr. Doom, until today. We left PCMC on Friday, December 13, 2013 (don't worry...I will eventually write the blog about that day...the singing neighbors need their day in the sun!). Soon after, we booked an appointment with Dr. Doom to see how Sam was doing - at the time, it felt like a long time away. In truth, it was less than a month. 26 days, to be exact. The day kind of stumbled upon us, as once we were released from the hospital, we headed directly into Lukas's 7th birthday, Christmas, New Year's, and our annual "staycation" at home. Yet, this morning, the pit in our stomachs returned. Another visit to the good doctor had arrived. And while, for the first time, we were immensely hopeful, we were also fearful...that our hopes were unfounded and we would get further bad news.
We had reason to be hopeful, though. Like an airplane slowly working its way through thick clouds, only to break through into blindly sunlight, Elisa and I had made our way home with a child we hardly recognized. How so? Like a love letter, let me count the ways:
- Sam's retractions, while still present, are less. Clearly he didn't working as hard when breathing, and we most notice it when we hold him (or he is napping and we watch him on the monitor). He isn't bobbing anymore.
- More to the point, Elisa, like any regular parent, has to check on Sam during naps because she can no longer tell if he is breathing (due to the lack of bobbing)
- The pulse oximeter is never close to alarming. Literally, every night, his saturations have stayed between 95-100. Without fail.
- In addition, Sam's heart rate never reaches scary levels. While sleeping, he's between 100-120. While awake, he's between 120-140. It's a beautiful thing.
- Sam's hysterical crying episodes are gone. No arching. No clawing at our faces. No out of control, inconsolable episodes. Not one.
- While not sleeping 12 hours at night, Sam's ranged between 5-8 during his largest stretch, and doesn't wake up out of control. Just hungry and wanting mommy.
- He's happy. He smiles. He has started to giggle. He's a pleasant child to be around and loves to sit and talk to us.
- He has taken to standing on his legs. He loves it - could do it for hours and gets goofy grins when he's testing the weight on his legs.
- We even started oxygen trials, taking him off of the oxygen for extended periods. Early on, we would do it for 5-15 minutes. By the time our appointment with Dr. Day rolled around, our best trial had been 35 minutes without Sam dipping below 88% oxygen saturation. The alarm didn't go off.
As you can see, hope was springing eternal. So it was half full of excitement and half full of worry that we headed into see Dr. Doom. Would our hopes be founded with good echo and x-ray results? Or would we be told that while he was doing better, the danger was still real and the levels of meds, oxygen, etc. would be staying the same? To say we were nervous was the understatement of the year.
When we arrived at PCMC, we were immediately escorted to Radiology. Like our previous 4 visits, we would be starting with a chest x-ray. Our previous experiences were all the same. Sam would scream during the x-ray and we would see pictures that were overwhelming. Literally 75% or more of his x-ray would be heart. We weren't doctors, and we always knew it was enlarged. So today, while Sam screamed on the x-ray table, I squinted at the screen. What would we see?
My first impression was that the heart was still enlarged, but it didn't look as big as the last x-ray. At that very moment, I realized how brilliant I had been in the day after Sam's surgery at PCMC. I'm not sure why, but as we walked into the room after getting coffee, the x-ray tech was leaving Sam's room and his x-ray was up on the machine. I pulled out my iPhone and snapped a picture. I remembered that I had done this during today's x-ray. I immediately pulled out the phone and texted the pictures to Elisa so I could go back and forth between the images. I had been right. As a non-medical professional, I could see a decrease in the size of Sam's heart. It wasn't normal, but it wasn't taking up his whole chest cavity. My hopes increased slightly as we headed back and waited for our exam. Usually, we headed to get an echo next. Today, we were going to meet with Dr. Doom first.
The nurse came into the room to do an EKG and while the door was still open, Dr. Doom/Day walked by and said hello. His first comment was that he had seen the x-ray, and "it looks like his heart isn't as large as it was, so that's good". He walked off. I smiled and eagerly turned my attention to what I knew was to come. Sam's oxygen saturation test (with oxygen, and then without). Sam hung out between 98-100 on oxygen. That was to be expected. And then we turned the oxygen off. I had hoped to seem him stay above 90. In the approximate 10 minute test, when he wasn't wiggling all over the place, Sam's oxygen readings stayed between 93-96. I was thrilled. Hope was really starting to grow, and I almost wanted to swat it away, fearful that I was setting myself up for disappointment. And then Dr. Doom arrived. Except, he wasn't as much Dr. Doom. He might have resembled Dr. Day.
We walked Dr. Day through the previous month - the bullet points I mentioned above, and our hope that things were improving. He showed us the previous x-ray and today's and clearly was pleased with the results. Sam's heart had gone from severely enlarged to moderately enlarged. His lungs looked cleaner as well. As a side note, after Dr. Day left, I walked up to the computer and the x-ray report that he had left on screen. It clearly stated that the "Aeration of the lungs is improved and the heart is not as enlarged as in previous x-rays". We asked him about his plans regarding Sam's medications, and especially his oxygen. He stated (and appeared) hopeful at Sam's condition and how he seemed. He couldn't believe how much he had grown. He asked "is he mostly on breastmilk?" I think he was surprised to know that he had gained 2 pounds in 26 days solely on breastmilk. That's right. Sam is now up to 14 lbs. 8 oz., while he was only 12 lb. 8 oz. on his PCMC discharge date. Yet, while Dr. Day was hopeful, he wanted to get an echo to see the results and then we could talk about what our next steps would be.
Elisa fed Sam and we got him to sleep while we waited for the echo technician. Of course, they took so long that Sam was waking (well, partly thanks to me coughing too) when they arrived. But we headed back and went through what felt like our quickest echo thus far. It couldn't have been more than 20 minutes long, and I didn't see anything on the screen that gave me pause. Not that I could read it - I just wanted to know the results. I was further amused that when the echo tech saw Sam unwrapped, she asked Elisa if he was on steroids. She was more surprised than Dr. Day to find out that breastmilk was the singular culprit of Sam's chubby cheeks and weight gain. We were ushered into our 4th room of the visit and waited for Dr. Day's final assessment.
If it feels at all like I've rushed up to this point, you'll need to forgive me. It's like leading up to Christmas morning...all the anticipation that you can't stand. Ladies and gentlemen...I present you Christmas morning. Well, at least some semblance of one.
The echocardiogram confirmed what the x-ray and Sam's bullet points of progress had indicated. The right side of Sam's heart has decreased in size. The heart is functioning normally. And while the PDA still exists, it also gives a window into the measurement of pressures between the heart and the lung vessels. You'll remember that at Sam's initial Dr. Day appointment, the pressures between the two were equal, which was a very bad sign. Dr. Day stated that the pressures in the heart were much higher ...indicating that the lung vessel pressure had significantly decreased. To sum it up, Sam's echo told us something very simple. The arrow was pointing up.
As a result, we were absolutely unprepared, floored, and excited at Dr. Day's next steps. He has instructed us to take Sam off of oxygen during the days, only giving him the 1/4 liter and cannula during the night. That's right...not a weaning down to 1/8, like we were hoping for. No oxygen. None. All day long. As long as Sam can handle it, and doesn't appear to be losing his color or struggling to breathe, the oxygen can be off during the days. I feel tears welling up in my eyes when I say that I'll soon get to see my son's face plainly for the majority of every day.
In addition, if Sam responds to the oxygen change, we can reduce the diuretic to once a day, can talk to Dr. Pete about getting on an easier/less invasive reflux medicine, and we don't need to return to see Dr. Day until April. I kept bracing myself for the doom. I kept waiting for the other shoe to drop. But I'm pleased to say that the doom didn't appear. The other shoe stayed firmly secure. We left Dr. Day's office with our best x-ray, echo, and oxygen plan that we've ever had in Sam's life.
I preface this with the reality that Sam is not healed. He is not cured. The fistula continues to flow a higher level of blood through Sam's heart. Multiple embolizations are on the horizon to take care of the fistula for once and for all. But Sam is healing. Sam is getting better. And for the first time since the second day of his life, we're starting to reduce the interventions on his heart and lungs. And today, of all days, Elisa's wonderful Twitter hashtag seems all too perfect to tell us the story of today's visit.
#DrDoomyNotSoGloomy
And we couldn't be more happy. More content. More exhaustedly proud.
And we've never been more hopeful. Because as one of our first PCMC nurses told us way back in October, "all you have is hope". Yes...well, that and a healing heart and a healing Sam.
I think it's safer to say (now more than ever) that 2014 is shaping up to be our best year yet.
