Monday, June 16, 2014

Is there an end? Nothing on the horizon yet...

I'm desperately hoping that by writing this blog I can distract myself just enough to avoid a complete meltdown.

As I mentioned in my last post, our first couple of days on Phenobarbital were rough, but they did stop the seizures. The plan was to stop the Phenobarbital and start Trileptal, a drug with more tolerable side effects. The first 24 hours on Trileptal went well. Zacchaio remained seizureless and although very lethargic at first, he eventually came back to his baseline activity level.

I've never believed in the superstition that is Friday the 13th, but after experiencing our own a few days ago, I now have eternal friggatriskaidekaphobia.

Sometime mid-day on Friday before I gave Zacchaio Propranolol (one of his heart meds), I noticed the label stated 1.3mg instead of 1.3mL (of a standard concentration). It turns out 1 of his 3 meds was ordered incorrectly and he had been getting just under a quarter of his usual daily dose since Wednesday. Although the error threw me for a loop, I was more enthusiastic about the fact that his heart rhythm/rate was looking better now than it has ever looked before! The physicians said and did all the right things to remedy the error, but following its discovery, our cardiologist decided to trial him off the medication altogether. We changed a variable, and now it was a matter of waiting and seeing...

Later that night I was holding Zacchaio and noticed that he suddenly felt warm. His temperature came back 101.4 degrees. Great, that's what we need. Within the next few hours he started getting congested and began having lots of secretions that made it slightly more difficult for him to breathe. Great, that's what we need.

A few hours after that we noticed a strange winking of his right eye. We initially wrote it off as "weird baby behavior," but he began doing it rather repetitively. So we took advantage of modern day technology and took a video on our smart phones. We let the nurse know, who let the resident doctor know, who then came to the bedside and was able to witness a blinking event. I was convinced it was a seizure. She said, "maybe he just has an eye irritation?" I gave her a dirty look, because I don't like being dismissed, yet managed to kindly request that she let the neurologist know. After a game of telephone was played in the reverse order, we were told to keep an eye on the behavior and to let them know how many times it happened overnight. Fine.

On Sunday morning the doctors were feeling good about sending us home. I played along, asked many questions, but as much as I tried to be on board with the discharged; something irked me. One of the pediatric doctors picked up on my hesitance and after explaining he had only been fever free for 8 hours, he had only been off his Propranolol for 12 hours, and he was still doing the eye wink... She understood. There were too many variables haunting my dreams, too many loose ends. So we stayed overnight.

Aidan and I were not aware that Neurology had "signed off" on Zacchaio's case on Saturday, but that explains why we never had an opportunity to see them on Sunday... even though he kept winking.

Fast-forward to this bright and lovely Monday morning where doctors came through in waves reminding us of our impending discharge. I felt comforted knowing Zacchaio hadn't had any fevers since Friday night AND was still managing an amazing heart rate and rhythm without any Propranolol. All great news! Except he was still blinking. Neurology didn't have any intention of coming to see us this morning (since they had signed off on Saturday), but I was annoyingly persistent in my request to see them.

Eventually they came, and after listening to me describe the winking event, they didn't think it was a seizure. So I showed them the video to convince them otherwise. And they agreed that the repetitive winking mimicked seizures. Now we're taking a closer look.

Zacchaio had the EEG monitor placed again earlier this afternoon and they are in fact seizures. The neurologists are having a hard time identifying where they originate because the muscle spasms in his eye are muddying up the reading.

The short-term plan is to increase the Trileptal (anti-seizure) dose and see if his winking spells go away.

We're feeling discouraged. Zacchaio's life story has been, "But wait, there's more!" My plate is full, too heavy, and I don't think I can take much more. The last 5 days have been over-saturated with new findings, frustration, disappointment, and grief. I've managed to keep it together all 5 days until today. My emotional reserves are empty and we're praying for a break, as we always do, so we can refill the tank and continue on this path of hope, love, and patience.

1 comment:

  1. Alexis and Aidan, I know you are both as overwhelmed as you can possibly be with no guaranteed end in sight. I pray that something happens to give you peace and relief. I, for one, am thanking God that you are a trained RN and speak up. Your son's condition might be so much different if you were not there (not that it's an option). I send all of you and your families all my love and pray that soon you can breathe again. Love, Vicki O'Grady