Miami Children's Hospital

The following year my parents and I flew down to Miami Children’s Hospital of Florida. Their staff was made up of many international doctors who came to the United States to specifically work with children and seizures. Miami Children’s Hospital told my parents to expect to stay there for at least three weeks. During which time there would be tests and if all went well I would have two major surgeries. 

So in August of 1998 my parents checked me into Miami Children’s Hospital and they checked themselves into the Key Biscayne Marriott about 10 miles away from the hospital. The medical staff needed to start me back at ground zero since they would need to document and videotape my seizures to have a better understanding of what area of my brain the seizures were coming from.

The first week started out with the staff videotaping me for 24 hours a day with the use of an EEG connected to my scalp. Just like Hershey Medical Center did they slowly weaned me off my medicines until I would have a seizure. That way they would be sure to see what kind of seizures I was having and what part of the brain my seizures were coming from.

This was not a comfortable situation for my parents because when they took me off my medication the year before at Hershey Medical Center I ended up going into code blue. My parents directed the medical staff that as soon as I had a seizure they would have to put me back on my medication because they did not want me going into status nor another code blue. However, after being connected to the EEG machine for two weeks with no signs of any seizure activity they decided they needed to move on with other testing. So as they were removing the electrodes from my head I had a seizure.

Mean while, during my stay at Miami Children’s Hospital I was lucky enough to have my own room. Although it was a Children’s hospital and they allowed parents to sleep there, it was recommended that it was best for my parents to get rest away from the hospital room. My parents would arrive at the hospital at 8:00 in the morning each day and leave around 7 or 8 o’clock at night.

Me and Eeyore

Since I was an active 13 year old who did not like being bored, most of their days involved keeping me entertained. It was difficult to keep me busy since I was connected to so many machines and was not able to leave the bed other than to go to the bathroom. The only other thing I could do was to take a walk with my parents. However, my parents would have to push me in a wheel chair and push the monitor along with me since there were wires connected to my brain and IV’s in my arm. At one point when I was being transferred to a medical procedure one of the many needles in my arm came right out. I specifically remember this as I said, “uh, excuse me.” The staff was in shock how quiet I was as it happened as most children would freak out. 

Connected to wires

When it was time for my parents to leave at night, I did not mind, as the staff was friendly and when they left at night I was tired and ready for bed. My parents would be starving when they left since they had not eaten dinner yet. However, once they had gotten back to the hotel they would call me and say goodnight to me.

The second week in the hospital my neighbor and my babysitter Vicky flew down to see me. This gave my parents a chance to run out and eat lunch or just go back to the hotel to rest, as Vicky or the Child Life Specialist would entertain me. (As a Child Life Specialist they use their knowledge of child development and developmentally appropriate interventions to educate, prepare and support children through difficult tests, procedures and the sometimes drastic changes that happen within their families due to chronic or acute illness, treatment and recovery.) Not only did the Child Life Specialist also give my parents a chance to run out for a bit, as she entertained me, but she would inform my parents of what would be happening with testing and any procedures that would be happening that day.  During my stay at Miami Children’s Hospital one of the games the Child Life Specialist taught me how to play was Mancalla.  This was a game I would end up playing everyday.

Me with the Child Life Specialist

Since I was currently on 4275 milligrams of three different types of anti-convulsant medications to control my seizures, it made me a picky eater. The seizure medications took away my appetite as well as made things taste bad. During this time it made eating food difficult. Even as they decreased my medicine I would only eat certain things and since I was given hospital food everyday, nothing appealed to me. However, one thing I would eat at that time was pickled okra. This was not available in the hospital so my parents would have to run out to the grocery store to get it for me.

After the first 2 weeks week of being hooked up to an EEG and being videotaped, no seizures occurred. Since there were additional test that had to be done the doctors decided it was time to disconnect me from the EEG and move on. Nonetheless, right after they disconnected the EEG machine I had a seizure.

The next day I was scheduled for the last pre surgery test involved a major surgery by opening up my skull and implanting subdural electrodes in the right temporal region via left craniotomy with multiple arrays on the surface and underneath the temporal and occipital lobes.  Subdural electrodes consist of a series of discs that are mounted in thin plastic. They are designed to lie on the surface of the brain. Wires were attached to each of the electrodes and ran to a machine to determine what areas of my brain my seizures were coming from. After the electrodes were placed on my brain I spent the rest of the day in the ICU (intensive care unit).

The next day I was sent back to my room where I was staying. This time I not only had electrodes on my brain, but wires coming out of my brain and head wrapped up in sutures. Later that day two EEG specialists entered the room and explained to my parents that they would hook up sensors to an EEG and the test me with different objects. The plan was to map and measure my brain so the areas of the brain that controlled my senses would not be damaged if brain surgery would transpire. They told my parents ahead of time that while they stimulated a different part of my brain there was a chance that it could cause a seizure.

During the time of this procedure my Dad did not want to be in the room while they tested me. He did not want to see what would happen for fear I would have another seizure and go into status and possibly another cold blue. He also did not want to see me in pain. My mom on the other was brave enough to stay with me while it took place. She had found it interesting to watch because they would show me an object as they stimulated an area of my brain and if the area of the brain was my speech, I could tell the doctors what they were showing me. If it was another area of my brain and I could not tell them what they had in front of me (e.g. pencil) I could not say the word.  Luckily during this time I showed no signs of having a seizure and the testing went fine. After the testing was complete they determined that I was a good candidate for brain surgery.

The third week that I was there, I would have brain surgery. Prior to my surgery the doctors explained to my parents the surgical and non-surgical interventions. As the doctors explained to my parents the choices they had, they also evaluated what the risks of surgery could include, but not be limited to death, increased disability, hemiparesis (partial paralysis affecting only one side of the body), loss of speech, loss of other functions, continued seizure activity, worsening in seizure activity or a need for more surgery. What the doctors could tell my parents prior to the surgery is that I would almost surely have an extension of my superior quadrant field cut to include the inferior field as well, which would give me a homonymous hemianopsia. (The loss of half of the visual field on the same side in both eyes. It occurs frequently in stroke and in traumatic brain injury due to the connections and wiring of the visual system with the brain).

Because this was a huge decision to make my parents seeked out to the international doctors who were testing me, “if it were your daughter what would you do?” Without hesitating and with confidence, they said that they definitely would proceed with the surgery. My parents had agreed that it would be better to take the chance and try to make me seizure free regardless of the outcome. My seizures were not getting any better and my parents knew that I would not have any kind of independence in life if I continued to take seizure mediations without surgical intervention. The fact that my seizures were continuing to worsen overtime made it an easy decision. This was a once in a lifetime opportunity.

I didn't like having my picture taken!