Racking up the frequent flyer miles at our local ER

On Wednesday, I got a call from Ethan's school that he was had a cluster of uncontrollable seizures, that lasted about 4 minutes, so I went and got him from school and brought him home. He was exhausted and rested a majority of the day, but we didn't see another seizure all night.

Yesterday, I decided to keep Ethan home from school and let him continue to rest, because he slept in and seemed extremely tired. We had a nice pajama day here at home, he was extra affectionate and took a really good afternoon nap. We didn't see any seizures all day.

This morning Ethan woke up and seemed well rested and was acting like his usual self, so I took him to school. School begins at 8:30am and just about an hour later I got a call from his teacher letting me know that Ethan had had another seizure episode and that it lasted over 5 minutes so the nurse had given him the rectal Diazepam. Of course, I was freaked out and I let them know that I would be there as soon as possible. As I was driving to school the nurse called and said that the Diazepam had not yet stopped the seizures and asked if I wanted her to call 911. Obviously, I said yes, and called Jeff to let him know what was going on and ask him to meet us at the ER.

It is about a 10 minute drive from our house to the school and the ambulance beat me there and Ethan was already strapped onto the stretcher when I arrived. This momma held it together, but I was a mess on the inside. The seizures had stopped by the time I got there but they had lasted for approximately 12 minutes. It wasn't one continuous seizure, but rather a cluster, so he would have one, it would end, and then he'd go right into another one. Nasty stuff, none the less.

I'm not sure what it is about school that seems to make his seizures appear to be worse, and everyone who works with him has tried to determine if there is something that is "triggering" them, but so far there is no indication that that is the case. So, just like our ambulance ride from the school to hospital back on Friday, November 13th, off we went. The paramedics were great with him and there were ready for us at the hospital when we arrived. Jeff got there just a few minutes after we did.

They started an IV and drew blood for testing, did a chest x-ray to help rule out a respiratory infection, swapped him for the flu and RSV and thankfully everything came back normal, which is good, but it also doesn't help explain why the seizures continue to break through. Ethan was given an IV dose of Keppra before we were discharged with a plan to up all of his anti-seizure medications. So, this evening we increased the Keppra and tomorrow we will increase the Onfi and the Topamax (which was already scheduled to increase tomorrow anyway).

We were at the ER for about 4 hours and we are very appreciative that one of the pastors from our church stopped by to check on us, to visit, and to pray with and for our family. Pastor Aaron read to us a well known passage that we keep going back to over and over again ---

"Rejoice in the Lord always. I will say it again" Rejoice! Let your gentleness by evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things. Whatever you have learned or received or heard from me, or seen in me - put it into practice. And the God of peace will be with you." (Philippians 4:4-9)

Jeff had just reread this passage to me earlier this week before we prayed one night before bed. We know that God is good and loving and that He loves Ethan even more than we do. We know in our hearts and in our minds that God is going to take care of our son, but as Ethan's parents it is really hard to not worry about this stuff.

We are in a place right now that I feel like the seizures (and PBD-ZSD in general) are our "fiery furnace." For those who might not know the story, you can learn about the three young Hebrew men, Shadrach, Meshach and Abednego and King Nebuchadnezzar's fiery furnace in Daniel 3 and/or from the Shane & Shane song "Burn Us Up" (thanks, Pastor Aaron).  So many times in the last several months as we have been really struggling with the seizures I think of the reply that these young men made when facing uncertain death by a foreign king -- "If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us from Your Majesty's hand. But even if He does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up." (Daniel 3:17-18).

Obviously, our battle with seizures is not the same as being thrown into a fiery furnace to die (if you don't know how Shadrach, Meshach, and Abednego's story turns out, you should really check it out), however we are standing up and saying that even if God doesn't take these away and even if he doesn't heal our son this side of Heaven we aren't going to turn away from Him. I'm a simple sinner saved through grace who continues to fail my Savior each and every day, and who still has questions and doubts especially when it comes to the suffering that occurs in this broken world we currently call home, but I know that God has a plan and that He has not left us, even when it is hard to see the purpose behind all of this and it is nearly impossible not to ask why. (Romans 8 is a good place to read about God's presence in the midst of suffering).

Are we upset, sad, worried, concerned, and scared about the seizures? ABSOLUTELY. Do we desperately want relief and healing for our son? YES. However, even in the midst of our frustration and our sorrow we are not hopeless and we haven't given up on God. Rather we know that it is now that we need to cling to Him.

Hebrews 13:5b - 6, assures us that "because God has said, 'Never will I leave you; never will I forsake you.' So we can say with confidence, 'The Lord is my helper; I will not be afraid. What can mere mortals do to me?" and Psalm 46:1 tells us, "God is our refuge and strength, an ever-present help in trouble." I know these things deep down in my soul, but to be completely honest, I still have a hard time sometimes, because being Ethan's mom is tough. I love our little boy so much and it hurts so much to see him suffer and there be so little that I can do to make it stop. I can't cure PBD-ZSD. I can't make his little brain stop seizing or fix every single cell in his body that is damaged because of this horrible disease. As his mom, I want to be able to do that for him and selfishly for us. I know God has the power to heal my son, this side of heaven, but I also know that just because God can do something doesn't mean that He will (that's a whole different topic).

So, right now we are just going to focus on trying to do our best to love Ethan and get him access to the doctors and medications that we pray will help stop the seizures in addition to praying for them to go away. We would like to ask you to join us in praying for:

  • Ethan's seizures would go away -- whether that be through a supernatural miracle or medical miracle --- because we do believe that God has allowed for medications and treatments and that He often uses them. 
  • Ethan to not be scared or frightened or in pain during the seizures and for the medications to not have any adverse side effects.
  • The doctors treating Ethan and that we could get an appointment to see the local pediatric neurologist ASAP.
  • Jeff and I would feel God's presence and His peace, strength, and comfort so completely that it is overwhelming and undeniable. That we would be able to recognize and enjoy all the great moments that we have with Ethan and not let them be overshadowed by the "bad"ones and that we can be the parents Ethan needs and deserves.
  • Healing, the development of effective treatment options for PBD-ZSD, and ultimately a cure. For the doctors and scientists who are dedicated to finding ways to improve the quality of life for our children. For success in awareness campaigns and fundraising efforts so that more research can be done.
  • The teachers, nurses, therapists, and other staff members who work with Ethan at school. 
  • Our country and world. For all those who are currently suffering because of the sinful acts of others. For the refugees around the world who have been forced out of their homes due to violence and fear. For the families who have lost loved ones in the recent mass shootings in CO and CA. For the thousands of families who lose a loved one every year because of gun violence.
  • Our witness and relationship with Christ and with one another. That despite our sinful nature and human failings, those around us would be able to see that we have put our faith in Christ and that it is because of Him that we can still have hope and joy even in the midst of suffering. That we would cling to one another and support each other and Ethan during these difficult times.
  • Our family and friends who don't know Christ. Our hearts are heavy for the many people we deeply care about who do not know the forgiveness, grace, and love that only Jesus can give. 


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