Day 7 EMU and HOME

Day 7 LAST DAY July 30, 2018 EMU, Barnes Hospital/Home to his parents in STL

We were discharged today at 5pm. The discharge process takes a very long time to ensure that everything is in place. We seem to be a special case as well. Since Greg did not have any seizures the neuro team at the hospital had to touch base with our current STL neurologist to decide what approach to take with medicine. They finally decided to keep the level of Keppra, (the medicine he has been on since the start) and take away the extra medicine that was added when we were in KC at the hospital after his July 15^th seizure. However, they added in a medicine he was on for or short time and changed it to twice a day to help fill in the gap so to speak. The next few days will be a challenge for hiato reacclimate to his seizure medicine plus the additions. He has been off all medicine since Tuesday evening, the fog from the medicine had cleared and he’s been very clear-minded the last few days! The medicine fog is just one of the trade-offs with attempting to be seizure free. He will readjust again.

The last 7 days were challenging in many ways. Greg was essentially in a small room, unable to leave or shower. He kept good spirits and was very glad to get home and shower tonight! We trust that in the big picture things were gained from this stay. We will follow up with our neurologist (hopefully soon) and should see more of the benefits that came from this. We are so grateful to all of you.

(If you prayed the Solanus Casey Novena with us, thank you, today was the last day and it is his first official Feast Day!)

Blessings

Day 6 EMU

Day 6 July 29, 2018 EMU, Barnes Hospital

It was a quiet Sunday here. One more day left. We expect to leave sometime tomorrow early afternoon, with or without a seizure. The Dr said it wasn’t all that uncommon not to have a seizure while here. I guess we may be part of that percentage. We have one more night. We are hoping for a seizure but know that with or without a seizure we are here for a purpose (even if we don’t see the immediate reason). After our discharge we will follow up with our neurologist and our oncologist. We are not sure when we’ll return to KC. Thank you for your prayers!

Day 5 EMU

Day 5 July 28, 2018 EMU, Barnes Hospital

Another uneventful day. We are still waiting and hoping for a seizure. It is certainly challenging sitting around waiting. I (Maureen) have been fortunate to get out a little each day, but obviously Greg is tied to his room. Being 5 days in without the progress we’d been hoping and praying for is starting to wear on us. Your constant prayers have been a consolation. Please continue to pray for the doctors to know our next steps, with or without the seizures, and for us. Thank you!

Day 4 EMU

Day 4 July 27, 2018 EMU, Barnes Hospital

In Greg’s words “my seizures appear to have stage fright”. Today was quite uneventful. Greg did complete his 20 minutes of biking. He gained inspiration as he watched the Tour de France! The big update from today was about the pain he’s been having. We had a visit from the oncologist nurse practioner. They had looked at the upper-body CT scan completed on Monday and noticed that he had a fracture in his right scapula. This would explain the intense pain and how it has “radiated” to the back and the right side. Although this sounds like a piece of bad news, we were thankful to have a reason and rule out more concerning possibilities. We are hopeful that tonight will be more eventful. Although his seizures always produce a lot of pain afterwards, having the data on the EEG would prove so helpful for the doctors and our next steps. Thank you for your continued prayers and support! Blessings

Day 3 EMU

Day 3: July 26^th, 2018 EMU, Barnes Hospital

Today was again uneventful. Greg did not have any seizures last night, as we expected him to have after staying up until 4am. Thankfully we were able to sleep in until about 8:30am. We finally saw the neurologist around 3pm and he decided to add a few things to help stimulate brain activity. Even if these don’t produce seizures they could stimulate brain waves that help them. Today Greg underwent a series of flashing lights, like a strobe light, directly in front of his face for 3 minutes. (I believe photosensitivity is what it’s called.) They also wanted him to ride a stationary bike for 20 minutes to “stress” him. However, the stationary bike they brought it was too short and small and Greg couldn’t get his legs going.  Apparently, they have a bigger version of the bike that we’ll try tomorrow. He is still battling the chest pain, so that was a concern that weighed into us holding off the bike for now as well. We thank you for your prayers, that the doctors are led to some answers over the next few days.

Day 2 EMU

Day 2: July 25^th, 2018 EMU, Barnes Hospital

Today has been uneventful. There has not been any seizure activity yet, despite stopping one of his anti-seizure medicines and cutting the other one in half. We have been given sleep deprivation orders. This means we cannot sleep until 4am and will only be allowed to sleep until 8am.

Day 1 EMU

Day 1: July 24^th, 2018 Epilepsy Monitoring Unit, Barnes Hospital

We arrived in our room at 8:30am this morning and the hooking up of his EEG began. We settled in and eventually met the attending Neurologist to find out the plan for the next few days.  Since Barnes is a training hospital, most doctors have Residents and Fellows that accompany them to learn alongside and offer input. We gave our history to them both as well as the nurse practioner (you repeat it a lot, as new nurses and doctors cycle through). We have had two lovely nurses today, who have been attentive and compassionate.

You would think that arriving for a 7 day stay where they induce seizures is bad enough. Ours has already been a little more interesting. To back up, yesterday we spent the morning in the ER as Greg had chest pains and an elevated heart rate. The tests (EKG, blood work and CT scan of the chest) where inconclusive and we went home. These symptoms were concerning at they were the ones that eventually put Greg in the hospital back in February 2017 when he was diagnosed with his Lung Cancer.  (We have a follow up with our oncologist next week after we are out of the EMU, and both his oncologist and the attending ER Dr, said to go ahead with the EMU today.) Since being admitted today his chest pain has continued and he has started to run a mild temperature, battling a fever. No one has any idea why these random symptoms are occurring. We have our plan to go ahead to start decreasing his anti-seizure medicine until a seizure is produced. I don’t know how these other symptoms come into play. What I do know is we are in very capable hands. The neuro team and staff are the best around, top ranked in the country. His oncologist is nearby, and any other medical needs that arise could be taken care of as well. Please continue to pray for the doctors, as well as Greg’s body, that we can get answers and move forward to a stable life, or miraculous healing!

Taking a More Aggressive Approach

Welcome back to the next blog post of Thriving Not Just Surviving.

The rough stretch continued this past week after I experienced another seizure on Sunday, July 15 at 9:20 p.m. After I was brought to the emergency room I experienced two additional seizure episodes which were both severe and extended in duration, resulting in a refracturing of my right shoulder. The total of three episodes forced me to spend the next few days in the hospital. I was discharged from St. Luke’s in Kansas City on Wednesday, July 18.

The biggest point of frustration and concern is that the more we have done in an attempt to remedy the seizures, the worse they have become. Despite increasing/adjusting medicine, diet changes, lifestyle changes, using a CPAP machine, and reducing stress the seizures have increased in frequency, intensity and duration. The most alarming recent development was the seizure that occurred when I was fully awake and walking around. Until now I was fairly confident that I was safe from having seizures during the day. This most recent development changes that.

The continued lack of success has forced us to make some significant changes in our approach to the seizures. A few weeks ago we discussed the possibility of undergoing  comprehensive 24/7 monitoring in attempt to pinpoint the location and cause of the seizures. At the time, our neurologist decided against it based on the risk of monitoring my complex and severe seizures as well as waiting to see if the new medication would work. We now know that the new medication is not working and my neurologist is comfortable with the amount of risk this monitoring will pose.

I am scheduled to be admitted to the Barnes Jewish Epilepsy Monitoring Unit (EMU) on Tuesday, July 24 and may be there for up to seven days. The goal of this monitoring is to learn as much as possible about my seizures and anything abnormal occurring in my brain. The most effective learning method is to induce multiple seizures that are extended in duration in which the neurologists and epileptologists will track using a video EEG. That’s all I know at this point. I expect to learn much more about what to expect over the next few days.

It’s not easy to overlook the risk associated with this approach. It was just a few weeks ago that my neurologist was concerned about broken bones and other complications stemming from induced seizures. At this point I have to put my trust in the doctors and staff at the EMU that they will be able to handle the complex nature of my seizures. Barnes Jewish Hospital does have one of the top epilepsy centers in the country and I’m confident in their ability to have success in monitoring me.

Maureen and I are hoping to do regular posts during my time in the EMU. Stay tuned for much more later this week.  

Staying the Course

Welcome back to the next blog post of Thriving Not Just Surviving. Despite the holiday on  July fourth, its actually been a fairly busy week in terms of medical news. There are no new seizures to report and my shoulder is starting to feel much better. A visit with the orthopedic surgeon on Thursday confirmed that the same part of the shoulder was injured, but the fracture appears to be no worse than it was several months ago. Essentially, the shoulder has been reinjured in the exact same spot, but not nearly as extensive.

If you remember from last week’s blog post, I underwent a 24-hour EEG monitoring session in attempt to detect abnormalities in my brain waves. Many epileptic patients have abnormal brain waves even during periods in which they are not seizing. The EEG usually can detect these and aid the neurologist in diagnosing and treating epilepsy.

The results of my EEG session came back completely normal. This may seem like a good news because it means that either my brain is completely normal during periods of seizure free activity or the abnormalities are so small and deep inside the brain making them undetectable by any type of brain monitoring. However, without any information obtained from the test it makes it very difficult to pinpoint the location and cause of the seizures. This was my third normal EEG test since February and I’ve also undergone several brain MRIs in attempt to detect structural abnormalities that could be inducing the seizures. The MRIs have come back normal as well. 

What Does This Mean?

This means that my seizures/epilepsy will continue to be difficult to treat and diagnose. I am currently not a candidate for brain surgery, due to the normal MRIs. According to my neurologist, the only time in which abnormal brain waves could be detected would be during an actual seizure while hooked up to an EEG. The logical next step would be to be admitted to the Epilepsy Monitoring Unit (EMU) for 24/7 monitoring and halt all medication in order to induce a seizure. Maureen had mentioned this was a possibility in last week’s post and this was the course of action we were hoping for. However, this is not as easy as it sounds and we learned from the neurologist that this is not the best course of action at this time.

Why Not?

I’ve experienced two seizures since starting the medication over the past 5 months. However, they  have decreased in frequency and severity. So the current medication is effective to a certain degree. Obviously we are shooting to be seizure free moving forward, but its not as simple as switching or halting medications. Even though my seizures are less severe they are still violent enough to cause fractures and other complications. Typically, when an epilepsy patient halts medication in order to induce a seizure for monitoring purposes, the seizures increase in severity and frequency; many times, even worse than before the patient started medication. This can be manageable if the patient has minor/manageable seizures, but for me in turns into a life-threatening situation. We were warned that halting medication for inducing a seizure would bring significant risk for grave injury, even paralysis. 

Additionally, even if we were to induce seizures for monitoring there is a likely chance that the only course of action following the monitoring would be to adjust my medication; which we are doing already. At this point, the reward simply does not justify the risk.

What’s Next?

Just because I am not a candidate for monitoring or surgery does not mean it’s not an option in the future. In addition to increasing the dosage of my current medication (Keppra) we are adding a secondary medication at night. We may be doing another brain MRI this week. 

We are hoping and praying that maybe this is the right formula for me. Epilepsy is so hard to treat because the magic formula for seizure free life is different for everyone and not always attainable for everyone. If I continue to have seizures we will likely continue EEG monitoring and brain MRIs on an as needed basis. Its possible that in the future something may be detected that could provide more information leading to a more specific course of action.

I plan to stay in St. Louis for the next week as I adjust to my new medication. I’ve been warned to take things slower than before as the secondary medication (valium) may bring additional side effects and result in a longer adjustment period.  Hopefully I can return to Kansas City sometime in the next 1-2 weeks.

At a Crossroads

Welcome back to the next blog post of Thriving Not Just Surviving. 

This one is written by Maureen so it may take on a different tone of writing but I will try to do what I can to keep with Greg’s impeccable writing. 

Catching Up

Monday, June 25^th around 10:25pm Greg had another seizure, despite the CPAP machine. We knew that the machine most likely wouldn’t completely eliminate the seizures, but we were hoping that it would help. Despite the seizure Monday, being on the CPAP machine for 10 days now, Greg has seen an improvement in quality of sleep.

This seizure makes episode number 4 and was much like the other ones with one main difference. I was told to take the CPAP machine off if he started to seize (it was more of a guess on their part, I think, as Greg is a special case). In doing this, Greg stopped breathing without the aid of the machine and his lips turned blue. As you can imagine, not only watching your husband have a seizure but now stop breathing and turn blue was a lot to handle. Thankfully, he started breathing on his own again and we waited out his post-seizure state until he was conscious again and I took him to the ER as we suspected he fractured his shoulder again. This was confirmed at the ER. He has an appointment with an orthopedic surgeon in St. Louis later this week to find next steps to care for that.

Instead of driving to STL right away, we stayed in KC for a few days (thank you so much to the friends who assisted in this!) We learned our neurologist was on vacation so we wouldn’t be able to get an appointment until the following week (this coming week). Wednesday night we did receive a phone call from our neurologist (a very kind man to take time of vacation) and we drove to STL Thursday for tests.

This test consisted of Greg being hooked up to an EEG for 24 hours to monitor the brain waves, and if he had a seizure to give them some information. This is an outpatient EEG you take it home, but you can’t shower for the duration and you look quite interesting, so going out in public isn’t very high on the list of things to do (pictures will accompany this post). After we arrived in town Thursday afternoon, Greg got this hooked up. This is lengthy process takes about an hour. Friday afternoon we went back to the hospital, got the wires removed and, on the drive back to his parents got a call that nothing had recorded for the last 24 hours and we had to come back Saturday morning to try it again. Not what you really want to hear when it’s 100 degrees out, with all of this equipment glued to your head and you can’t do anything or go anywhere for 24 hours. 

Where does that leave us?

Greg’s doctor bumped up his anti-seizure medicine to its maximum dose. There is always an adjustment period with the increase. So far, we are 6 days in to the adjustment and due to the high levels of medicine it has been difficult for Greg to fully adjust this time. He is taking it all in stride, I’m very proud of his perseverance and determination. We are hoping and praying that this week provides some clear paths for us. I don’t think anyone would be surprised that we are at a point where both Greg and I are both frustrated at the lack of “normalcy” in our lives. By the time we get back into a routine of being in KC together, him going into the office, PT, message and Chiropractic appointments scheduled, another seizure happens. When we meet with our neurologist this coming week we will be pushing for more aggressive measures to find some answers. One of these measures would include being admitted to the Epilepsy Monitoring Unit (EMU) at Barnes where Greg would be monitored 24 hours a day for up to 7 days. He would be removed from his medicine and seizures would be provoked to monitor the brain before, during and after the seizures to find answers and possible solutions. While this may sound very unpleasant, we are praying that this can become a reality very quickly. You know both Greg and I aren’t people to remain idle and we want to get to the bottom of this and find a more normal balance. Whether that is achieved by different medication, a combination of medications, or in rare instances, brain surgery to fix the problem.

We grateful for the continuous prayers and support you all provide. Please keep praying to Blessed Fr Solanus Casey for Greg’s complete healing of cancer and seizures.  

Here is the Solanus Casey prayer:

O God, I adore you. I give myself to You. May I be the person You want me to be, and may Your will be done in my life today. I thank You for the gifts you gave to Fr. Solanus. If it is Your will, bless us with the canonization of Fr Solanus, so that others may imitate and carry on Your love to all the poor and suffering in this world. As he joyfully accepted Your divine will, I ask You, according to Your will, to hear my prayer for Greg Fiudo, that he may be fully and completely healed of cancer and seizures through Jesus Christ our Lord.

Amen.