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.