Roller Coasters

This is Brad once again taking a stab at this blog thing. From the top, I'll give credit where credit is due... I am stealing the idea for this blog post from Lindsay Rother. Lindsay is the sister of Jamie Smith. Jamie is the mom of Emerson Smith. Emerson is another baby from Edmond, born 10 days after Caleb. He also has Down syndrome and also had heart surgery here in Dallas. Lindsay recently wrote about "roller coasters".

The last week has been a roller coaster for us. To recap... surgery last Friday went well. Bypass machine off successfully. Saturday, the ventilator came out. Sunday, feedings became much easier. Plans were made to move upstairs to our own private room Monday morning. But a routine, last minute echocardiogram revealed that Caleb's lungs hadn't responded as hoped. His heart was struggling as a result. Pulmonary hypertension was the diagnosis. Not supposed to happen on kids that receive this surgery this early in life. More days in the CVICU to treat this new diagnosis. Extra medicine, extra gas through the nasal cannula. Tuesday brought good news as Caleb was responding well to the medicine and we learned more about how the hypertension in kids this young typically isn't permanent. His echocardiogram was better than the Dr.'s had expected. Wednesday was a mixed day as it started with a regression on bottle feedings and once again canceling plans to move upstairs, but it ended with an even better echocardiogram than Tuesday. So plans were made to move upstairs on Thursday.

So Thursday came and by noon we were on the move!!! Nevermind that he still wasn't eating great or that he was doing this weird quiver thing occasionally that morning, we were moving onward and upward!

But back to the quivering... Thursday morning I noticed that he was having this little quiver in his upper tummy and chin, followed by a short cry. It was certainly weird, but not too scary. I mentioned it to Steph and the nurses, but it never happened again. We assumed it was constipation or gas or hiccups or something else inconsequential. But then Steph saw it too. She agreed that she had never seen that before but wasn't too bothered by it either. So we moved upstairs. Within the hour of moving to our own spacious quiet room (with a door and a private bathroom), Caleb started having the quivers again. This time, a cardiologist was there to see it happen. He said that babies do weird things sometimes and to not worry. But then it happened again... and again... and again... each closer together than the last. Then, as we were eating our late lunch, the worst one we had seen happened. His belly quivered, his arms extended, his chin quivered and then his head started to shake. This happened a few times. Most followed by either a cry, a cringe, or a helpless little "please make this stop" look to mom. Steph said the words we were both thinking, but that I was afraid to voice, "It looks like a seizure". Mommy cried, Daddy pulled out the iPhone to record the next one. We called the nurse back in. Within 20 minutes, 7 or 8 doctors or nurses were bedside watching as the movements continued every few minutes. They only lasted a few seconds each time, but they were absolutely terrifying none the less. I wanted to pick him up and hold him tight but was told not to. The IV team was called up to start a new IV so that we could get Caleb some anti-anxiety medicine to calm him down (did it ever... and fast!). We were then whisked away to have a CT scan to see if bleeding on the brain was the cause. It wasn't. We then hustled back upstairs to have an EEG done. After 45 minutes of EEG, no abnormal brain waves were seen. However, since Caleb was in a deep medicine induced nap, he had no "episodes" during the test. Because of this, they decided to extend the EEG through the evening and night trying to catch an episode on film and measure his brain waves during it. We were told to push a little red button if we ever saw an episode. We never pushed that button.

That evening, as Caleb slept and slept and slept, the room was awkwardly calm. I think I showed that video to 15 doctors, nurses, or students. Many of them said that it didn't look like a typical seizure to them. My response was usually, "Then WHAT was it?".

This morning we were told that the neurology team visibly saw several "sudden movements" throughout the night as Caleb slept, was woken up, ate, and fell back asleep. However, throughout all of those, no abnormal brain activity was recorded. Yeah! We were told that infantile spasms (a type of seizure in young children) is one of those many lovely things that is more common among kids with Down syndrome and that Caleb needed to be watched closely. However, if he had infantile spasms, we should have seen something on the EEG regardless of whether they caught an episode or not. Remember, we didn't. We will repeat the EEG next week sometime to see if anything changes. The doctors are hopeful that this was an isolated incident. Until then, we wait for the next twist or turn on this roller coaster.

I have rethought through yesterday morning a hundred times trying to piece this puzzle together. Why did this happen? What caused it? I can't think of a medicine he took, a medicine he came off of, a change in his nasal cannula gases or his gas pressure, a change in his diet, or an abnormal result of a lab or X-ray that I was told of. Nothing seems to correlate. Maybe it was isolated...

Today was a very "boring" day. Never thought that boring would feel so nice. "Uneventful" is probably a better word. Steph's parents bringing lunch was the big event of the day. Since I slept at the Ronald McDonald House last night while Steph watched Caleb, it's my turn tonight to take care of him while she gets a good nights sleep.

For now, I will leave you with an excerpt from Lindsay's blog (I couldn't write it better myself):

"I’m sure what lies ahead will look much like a roller coaster…lots of ups and downs. We will celebrate the successes and baby steps forward. We will grieve the setbacks like any normal human would. But as anyone who’s ridden a roller coaster knows, the best part isn’t the start or the finish. It is all about the ride.

So life, I’m buckled and prepared for the unexpected turns you throw my way. But just like I am on any roller coaster, I’m scared out of my mind despite knowing it’s going to be okay in the end. Very intelligent people build roller coasters with countless levels of safety. They are trustworthy. The best part of all this, is that the blueprint for Emerson’s life is laid out and planned just like every roller coaster. It isn’t a question mark. The Creator of the universe, God Himself, knows the outcome. He knows every turn, drop and flip that’s ahead on this ride. He knows the ending. And it will be good regardless of what it looks like. My hope and trust lie in this regardless of outcome because I trust in the inventor of the roller coaster called life."