Well, I’m finally feeling back to my old self again. The last 2 months have definitely taken a toll on me. After a couple months of 3 separate hospital visits at Methodist Hospital due to grand maul seizures, a couple weeks of trying to clear a UTI (and still fighting it), and just getting over the 24-hour flu (that ended up lasting more than 48 hours) all last week. I also started to develop an infection inside my lungs and trach which fortunately is starting to go away now on its own.
It’s just like one thing was happening after another and I wasn’t able to catch up in between each episode. My body was worn down and unable to recover as quickly as it needed to. Unfortunately, when one sickness happens, many other ones follow. My immune system doesn’t function at a normal level and it’s harder to get rid of infections. Lately, I’ve been really focusing on relaxing so I can maintain stability and be able to function properly. Luckily I bounce back pretty quickly. I’m hoping this is the last of my seizures and everything will continue to be normal for a while.
*Insert Updated Message*
I was just about to post this the other night (Saturday 4/19) when I started to become a little out of it. I started to have multiple “mini” seizures. I say it like that because they weren’t like the minute long grand mal seizures I was having within the last 2 months. These ones were lasting about 15 to 30 seconds. My nurse had to call 911, the nonemergency line, and I went back to Methodist Hospital. My mom would have just taken me in our van because the seizures weren’t as bad. We realize that utilizing the ambulance isn’t always necessary, but my case is a little more complicated. I was so unresponsive, unable to talk with any clarity, and very confused. So it seemed like the natural decision just to use the nonemergency service to bring me in.
We found out the seizures due to going septic from a UTI that I had just got done writing about in the post above. They admitted me overnight in order to give me IV antibiotics and fluids and because I was still having some seizures and unresponsiveness. Luckily, they discharged me the following day because I was already hundred percent better due to the IV antibiotics. I made it home Easter Sunday at 12:30 PM before the 20 guests that came over. I’m now on the right medications and was able to enjoy a gorgeous 70°F Easter day with my family!
Hopefully within the next couple of upcoming posts, I’ll be able to update you on everything that’s been happening since I started getting sick and having seizures in February. Thanks for your patience and I look forward to updating more!
Friday, April 11, 2014
On Wednesday, February 6 at about 1:45 AM my nurse was sitting at the desk when all of a sudden she heard my vent start to alarm. She got up and rushed in and she quickly realized that I was having a grand mal seizure. My arms were outstretched and twitching, my eyes were rolled back in my head and my eyelids were rapidly moving. There was also foam coming out my mouth and my face was doing funny things as well.
We have an intercom system throughout our house so she yelled from my mom to come down. She raced down the stairs to find me unresponsive post seizure. It lasted less than a minute; they were calling my name and my nurse was trying to do a sternal rub on me. She did a quick assessment including taking my blood pressure, checking my oxygen level and pulse just trying to make sure I was okay. Everything was pretty normal except when she checked my pupils. She found that my pupils were very small (pinpoint) and non-reactive to light. I was unresponsive.
My nurse called 911 and they came, wheeled me out and brought me to Methodist Hospital. I had blood coming out my nose and mouth from biting my tongue and cheek. My nurse rode in the ambulance with me and my mom came shortly after to the hospital. My eyes were open but I was still staring straight ahead and nonresponsive. It is unclear whether or not the staring ahead was a petite maul seizure or if it was related to the grand mal seizure I had initially. Around 5 AM I had another grand mal seizure.
When I got to the hospital, they checked my CO2 and found that it was really low. The normal reading is between 35 and 45; mine was at 7. Within the next couple days after everything happened I was still not responding to anything. I was running a fever and one of the doctors came in and he said one of the causes could be that my ventilator settings were too high. Basically, I was being over ventilated causing me to hyperventilate. The technical term for this is called respiratory alkalosis. What probably happened is that when my nurse turned me on my side the large leak that I typically have around my trach was somehow sealed off. If this were the case, I was receiving my full breath coming in causing the respiratory alkalosis.
What is respiratory alkalosis?
Respiratory alkalosis is a condition that changes the balance of carbon dioxide and oxygen in the blood. When you breathe oxygen (which is needed by the body to function properly) it is inhaled into the lungs and carbon dioxide (a waste product) is exhaled. Normally, these two gases are kept in balance by the respiratory system. Respiratory alkalosis occurs when carbon dioxide levels drop too low. This causes the pH of the blood to rise and become too alkaline which is what happened in my case. Apparently respiratory alkalosis is associated with numerous illnesses and is a common finding in patients on mechanical ventilation.
Overbreathing is a sign that respiratory alkalosis is likely to develop. Low carbon dioxide levels in the blood also have a number of physical effects. These include: dizziness, bloating, feeling lightheaded, discomfort in the chest area, confusion, dry mouth, tingling in the arms, heart palpitations and feeling short of breath. Finally, an affected person may have a seizure. However, the NIH states that the risk of seizures is very low. They only occur in the most severe cases. As far as the recovery process, once carbon dioxide levels in the blood are brought back to normal, the symptoms should disappear within a short period of time. In other cases, the explanation is a general medical emergency. At these times, the outlook can be more uncertain.
Before they knew the cause, they did all sorts of things to try to figure it out. They put in a PIC line and started IV antibiotics. They tried to do a lumbar puncture to test my spinal fluid to see if I had meningitis. However, they weren’t able to go low enough because of my baclofen pump. I also had an MRI, CT scan, blood drawn; basically they did a full work up trying to figure out what was going on.
When they determined it was respiratory alkalosis they ended up turning down the settings on my vent. Then they checked my blood gases in different positions to see where I was at. They hooked electrodes to my head almost like a skullcap to measure brain activity and brain waves. To help fix the problem right away, they loaded me up with seizure medications and were surprised when my EEG looked like I had taken a lot of drugs LOL.
There were many funny things I did while on these meds. In one instance, I kept trying to tell them to take the washcloth off my head (the EEG). At another time, I was determined to have my nurse change the channel on the TV to channel 4 (I was actually looking at the monitor they had me hooked up to). It was also interesting when the doctor came in to do a mental exam on me. She held up a flashlight and asked me what it was and I got a big smile on my face. I said “it’s a scapula”. I also couldn’t verify my name or date of birth. They didn’t fully understand in the beginning that this is not how I normally act; they didn’t really know my personality so my nurse was showing them videos of me on YouTube.
In order to determine if I could eat/drink anything, that Friday afterwards they did a swallow study on me. They made me swallow this nasty chalky tasting stuff. It’s basically where they take a machine so they can see it go down. Because of the state I was in, I failed miserably. That’s when they decided to keep me on tube feedings to supplement my diet. Before I was able to eat again, I had to do the swallow study again. I was much more conscious and hungry for food! The second time I passed with ease but had to start out with Jell-O, applesauce and other soft foods.
I went home on Monday February 10th and tried to continue with my daily routine. However, on Thursday, March 20 I had another seizure at the same time in the morning. My nurse called 911 and I went in to the hospital again by ambulance. After doing some tests, they couldn’t figure out what caused it. This time, it wasn’t due to respiratory alkalosis; now I’m not sure if that was the only cause of the first seizure. I was only in the ICU at the hospital for one night. I went home the next day around 5 PM and continued my routine as normal trying to recover. Yet once again, at the same time on the morning of Wednesday, April 2 I had a 3rd seizure. The same thing happened as the first 2 and I was admitted to the hospital again. I was there overnight, discharged the next day and they still haven’t found a cause.
Unfortunately, each seizure has given me short-term memory loss. The first seizure was the worst and I don’t really remember that week or a lot of the time I was in the hospital. The other 2 were a little bit better, but not being able to remember things is difficult especially in my situation. Even though I don’t remember things and my memory is a little fuzzy, I do remember how happy I was each time I was discharged. I’m not a fan of the hospital even though I’ve spent so much time there.
As disappointing as is to have seizures in the first place, not knowing why they are happening is even worse. Currently, I’m seeing a neurologist and she prescribed a seizure med for me while we try to figure out the reason why. The biggest part is that seizures aren’t new to me. I used to have them after my accident in the same way and was on a medication for them. After 5 years of having them, in the beginning of 2009 I discontinued the meds after being seizure free for 2 years. I never knew the reasons for them back then and may never find one for these. The good thing is that I’m on medication for it now so hopefully they won’t happen again.