April 25th 2017 – Adylaede’s MRI with sedation. We scheduled it at Hershey Hospital, only 3 weeks after we received the abnormal results of her EEG. (Which you may read about by clicking HERE.) Since the MRI had to be done using sedative medication, she was instructed not to eat before the test. Her MRI was scheduled for 10:30am; we arrive at 10. They are apologetically running more than an hour behind schedule. Despite Adylaede’s tummy-growling, we are not too upset about this because we have discovered that if the office/hospital is taking their time with other patients, they will probably take their time with us too, if needed, which brings me comfort. Adylaede and I decide to play with filters on my phone’s camera to pass the time.
At 12:30 we are called back to have her vitals taken and to speak with the nurse and anesthesiologist. They highlight what to expect and we voice our concerns. While we wait for the previous patient to finish in the MRI room, I watch Adylaede play her own version of hopscotch by leaping between the brightly colored tiles on the mostly white floor. Sometimes, I offer suggestions on which color she could jump to next.
Finally, it is our turn. When I hear her name called, I feel my heart sink as I realize how nervous I am. I hide it; I am strong for her. They allow me to keep one arm under her head and hold her hand with my remaining hand, while she is lying on the hospital bed. She is scared now. Her wide eyes conveying fear, begging me not to leave her side. I assure her that I will be near her when she wakes up. They put the mask on her and try to comfort her as best as they can. I let go of her hand and run my hand across her forehead, she is staring at me, but I can tell that she is not focused on my face. She is asleep with her eyes wide open. It is unsettling. They inform us she will be okay and that if she doesn’t close her eyes on her own, they will do it for her. I remove my arm from under her head and begin to walk towards the door. I see her involuntarily pump her legs up in the air 2 times, I find this alarming so I instinctively grab her foot as we continue on to the exit. They rush us out and explain that they must get her on the monitors and place her IV immediately; they do not have much time.
And now we wait while the MRI is taking place. This is the hardest part. The wait. When the last time we saw her, was so discomforting. Anesthesia is weird- I know this and yet I still cry. I know that they do the anesthesia in a way that is most comforting for my sweet four-year-old ‘baby’ girl. I am grateful for this and unnerved at the same time.
They explained that they would find us in the waiting room when her MRI was finished, and to expect it to take an hour.
It took an hour and 10 minutes.
We are called back to the recovery room to be with her. I climb in the hospital bed to snuggle with her. The anesthesiologist comes in to share how great she did. She reveals that Adylaede took a little more anesthesia than she expected but not as much as an average-toned child weighing the same. She explains that children normally wake up from the anesthesia in about fifteen minutes to a half hour, but she would expect Adylaede, with her hypotonia, to take a little longer, perhaps up to an hour. I am relieved to be holding her as she snores.
One and a half hours later, she wakes up. She glances around, then exclaims, “Wow, mommy, I took a reeeeeeeaaaaaallly long nap at the doctors!” She looks down at her hand, wrapped in colorful sticky-gauze. “WHAT?!” she inquires, “I have a boo-boo?” She unwraps it to see exactly what has happened. “Ooooooohhhhhhh!!” she states, matter-of-factly, “I went to the doctors, took a super long nap and they gave me a shot.” We chuckle and find comfort in the conversation of her understanding. She eats a snack pack of goldfish, takes a few sips of gingerale, and is released to go home around 5:30pm. She is allowed to ride in a little red car stroller, belonging to the pediatric unit, out of the hospital. She is thrilled about this car ride and the chance to “drive.”
Her neurology follow up is scheduled for May 1st. The plan is to discuss the results of the EEG and MRI at the appointment. I am comfortable waiting.
April 27, two days after her MRI, I receive a phone call with ‘some’ results. The nurse explains that they found a “small” cyst on her brain and that the doctor would explain further at her visit. This is all I know. It was a bit upsetting to have this tidbit of information, and nothing more. I had no idea what this meant. Prayerfully, peace washes over me and I intend to make it to the appointment without googling a thing!
Nana (my momma) accompanies us to the neurology appointment. I am thankful to have such a wonderful support system. The neurologist shows us the brain scans and thoroughly describes each picture. She explains that it is a pineal gland cyst of 8mm. She explains the difference between a cyst and a tumor mass. The neurologist is still suggesting several medications for seizures:
- Treats partial, some generalized seizures and mixed seizures.
- Has few side effects, but rarely people report dizziness, insomnia, or rash.
- It is combined with other epilepsy drugs to treat partial seizures, primary generalized seizures and myoclonic (shock-like jerks of muscle) seizures.
- Side effects include tiredness, weakness, and behavioral changes.
The side affects sound scary to me. I am not 100% sure this is the route we should take. I realize that for many people, there is no choice, really, and this leaves me with a sadness.
After her appointment, I google and learn as much as I can about pineal gland cysts. This was the most helpful article I found: ( https://en.wikipedia.org/wiki/Pineal_gland_cyst ). In case you don’t wish to read it, it basically states that pineal gland cysts over 5mm are considered large cysts. They are rare findings, and can cause many symptoms, including seizures, weakness, fatigue, ect… In my limited research, I have found that not many doctors are knowledgeable in pineal gland cysts.
I don’t know if Adylaede’s seizures are caused by the cyst or not, but I think I might rather treat the cause than the symptoms, if that is a possibility.