The year is already conspiring to give me loads of opportunities to use my new-found, amazing mindfulness skills! HA! The whole point of my theme this year is to get some skills in an area I generally suck at! So, it seems as though the year is conspiring to throw me into a mindfulness boot camp with tasks to confront fear, trauma reminders, doubt, and anxiety. Sounds fun right?
It all started a week ago when I had a follow up appointment with my endocrinologist regarding my Large Thyroid Cyst. It had been bothering me lately as I have begun to be able to feel it when I swallow and it seemed to me that it had gotten bigger. My endocrinologist informed me that my cyst hadn’t gotten any bigger but he went ahead and aspirated it because it was bothering me. After he sucked out an entire syringe full of black fluid (old blood he said) my doctor did an ultrasound of my thyroid. With my cyst completely deflated, he was able to see my thyroid more clearly than he had in previous visits and informed me, quite bluntly, that my thyroid doesn’t look normal. To make a long story short, he ordered a lab to test for Hashimotos disease. The labs came back normal. However, my doctor still isn’t convinced it’s NOT Hashimoto’s but didn’t condescend to my level to really explain his reasoning. But if it’s NOT Hashimoto’s, then I have either a benign nodule or I have thyroid cancer. Good times.
I’ll tell you that threw me for quite a loop for a few days. I totally failed my first few days in mindfulness boot camp. But I did everything I know to take care of myself and try to manage my anxiety. By Monday I was feeling a bit better and I have a plan: Get a second opinion from another doctor…now I just need to find one.
Then this Tuesday happened and my cancer-ruminations immediately disappeared; replaced by something that scares me even more.
What I thought was going to be a routine check-up for Cami ended up being the beginning of something more.
I brought Cami to the pediatrician for her 18-month check-up. During this check-up the doctor listened to her heart for an inordinate amount of time. After listening to her heart he asked me, “Have we talked about her heart murmur before?”
GAH! Heart Murmur?! What?! Another round of boot camp just sucker punched me in the gut.
While my pediatrician tried to be reassuring, he did recommend we see a cardiologist at Primary Children’s Hospital.
Thursday morning we met with a cardiologist a Primary’s and the appointment WAS reassuring and also very NOT reassuring.
They took a chest x-ray of Cami, an EKG, four limb blood pressure readings, and pulse ox. Cami was a champ through all these tests. The cardiologist then came in and listened to Cami’s heart from more angles than I thought possible.
He told Chad and I that Cami has, not one heart murmur, but three. She also has a “click” that can be indicative of a heart valve concern. The X-ray revealed that her heart is slightly enlarged (Top Normal the doctor said) and her EKG was “slightly” abnormal. After telling us these findings, the doctor quickly moved to try to reassure us. Despite these findings, he’s not convinced anything is wrong with Cami.
Cami’s blood pressure was consistent across all four limbs, her pulse ox was 99% and she’s healthy and thriving. Plus, I guess murmurs are kind of a dime a dozen. However, given the findings, the cardiologist referred us for an echo-cardiogram next week to get a better look at Cami’s heart. This is an ultrasound and doesn’t sound like that big of deal…except it is because Cami has to hold completely still for 30 minutes. That’s impossible for an 18-month old so they have to sedate her for the procedure.
Panic and nausea set in at this point. I immediately saw flashbacks of watching a nurse carry three-month-old Charlie away with a mask on his face for his Hydrocile surgery. I remember how helpless I felt as I waited for him to come out of sedation after his surgery. I remember being so relieved as he cried but distressed that he didn’t eat anything for many many hours later. And even though Charlie seemed to recover great from his surgery…he DIED just over three weeks later. I KNOW correlation is NOT causation but I honestly don’t know how I will handle Cami being sedated and unresponsive. I’m worried it’ll bring flashbacks of even worse memories of Charlie (dead ones). I’m worried Cami won’t wake up.
But we had a pretty great tender mercy today: our cardiologist. When I called to set up an appointment for Cami, I simply asked for the “next available” appointment. The “next available” that fit our schedule set us up with Dr. Mart. Dr. Mart shared, shortly after meeting us, that he has lost two children himself. One of them is buried in the same cemetery as Charlie! Because he quickly learned of our history with losing Charlie (there was a question on the New Patient questionnaire “Had a child die suddenly and unexpectedly?”) and I suspect, given his unique ability to empathize, Dr. Mart went out of his way to reassure us and spent ample time with us, even though he was running about an hour behind schedule and had patients que-ed up and waiting.
I asked Dr. Mart if Cami could die suddenly, the way her brother did, and Dr. Mart reassured us that Cami isn’t at risk of sudden cardiac death as her EKG did not reveal any “rhythmic abnormalities.” He tried to describe her EKG abnormality as a directional abnormality and didn’t seem to be something dangerous or life-threatening. That was reassuring (but the Snuza is going back on!).
Dr. Mart also told us that he was pretty sure nothing was wrong with Cami but he was sending us for the echo-cardiogram just to rule anything out.
Before we left he asked us what other questions we had and he looked at me and said, “I don’t want you leaving, going to your car and crying.” I told him I probably would but that it was ok. In fact, both Chad and I ended up crying in the car. I haven’t seen Chad sob like he did today, in a very very long time.
For families that haven’t lost a child, this event might be mildly anxiety producing. But for us it is straight up GUT-FREEZING-SCARY. It brings up so many memories, so many emotions, and it feels so vulnerable. Dr. Mart acknowledged that he knows, given our history, that statistics aren’t reassuring, but that he’s 99.95% everything is fine with Cami.
Fingers-crossed he’s right.
I’m not liking Mindfullness boot camp so far.