Please Pray for Lucas

This is a somewhat different post than the last. This is an update of our recent struggles, not victory, though our hope and faith in victory remain unwavering.

January 15th, Lucas had two seizures (sz) like those he had when he first began having seizures. His typical sz presents as his head moves down and toward the left while his right arm moves left like he's going to give himself a hug and his right leg stiffly extends. There are varying degrees of this motion, some more severe in which he smashes his face into things and bruises an eye or bloodies a lip and others much more subtle which without looking directly at him would almost certainly go unnoticed as it is just a momentary movement most obvious in the quick glance of his eyes to the left. The sz he had when this all first began presented in the form of his right hand clenching into a fist repeatedly for minutes typically accompanied by his right foot making a tapping motion. The 15th of last month, this fist clenching sz is what we saw, for the first time in years.

When this all began, we were told that if a sz lasted longer than five minutes, we should take him to the hospital. (His first lasted about 45 minutes and had to be med-force stopped in the ER.) The two that we saw recently did not last that long, but I wanted to make sure we knew what to do if it did go on for at least five minutes. Of course, Lucas' neurologist (who I love!) was out of town for the week and the doctor covering for him advised that we double his Vimpat (the most recent drug he'd begun taking) and called in a script for a new medicine to be given for a long lasting sz.

I don't like to jump into big meds with Lucas, so we began increasing slowly. We didn't see anymore of the fist sz, but his "normal" sz were increasing. Wednesday night, the 25th of January came with sz that seemed they would never stop. He had at least 125 sz over the course of about 30 minutes. These were his "normal" sz, though mostly really small ones. Every time we thought they were stopping, they would start again. We ended up giving him the new med, Diastat, and the sz stopped. He fell asleep and stayed that way all night. In the morning, however, it began again with over 100 sz. I called Dr. Burris at 0630 and he advised that this was resulting from increasing the Vimpat. We have another drug we've given for large numbers/clusters of sz for a long time called Klonopin and he advised that if the sz didn't slow within 30 minutes after giving the klonopin, to give the Diastat again. The sz did slow, so we didn't do the diatstat and we dropped his dose of Vimpat down to way low in hopes that things would improve.

Things did improve. Not super dramatically like our last post, but they were certainly better... until yesterday. He fell asleep right before leaving for church and woke about an hour later, fine, peaceful, happy, and then they began, and wouldn't stop. I gave Klonopin after about 20sz, but they just kept going for over an hour, though they slowed some. I called Dr. Burris again (God bless that man!!) and he advised that we stop the Vimpat all together and give the Klonopin regularly, twice a day. He said that he was trying to keep us from going to the hospital. I told him that we appreciate that.

So, this morning comes with more sz. They have slowed significantly since beginning an hour and a half ago, but they haven't stopped. We decided to wait until office hours begin to call Dr. Burris instead of using the service that tracks him wherever he is, whatever time it may be. I am unsure what he'll advise, but I know that it is leaning toward probable that he will want Lucas admitted for observation. I guess We'll try to let you know today if that is what we do. Regardless, we appreciate your prayers.

I have been thinking a lot recently about the goodness of God and how He is above everything, knowing what is in our hearts, knowing our drives, our longings and how we are only satisfied in Him. My heart aches for my son, for my husband who burns with desire to save his son, for Eliana whose life is so different than others because of days like this. I think of my in-laws who are in NY and feel so helpless, though I am right here holding him and can seem to help no more. All this, believe it or not, inspires hope in me. I thank God for these aching longings because they turn us to God. I know that there are those of you who don't pray and maybe wouldn't ever, if not for your love for Lucas and our family. Maybe you aren't even sure that anyone is listening, but I know that there is Someone listening and I know that He delights to hear you and He aches with longing to satisfy you as nothing and no one else ever could. I wouldn't wish anyone to have to face what we have faced, but I don't consider it a burden, but an honor. Lucas is an inspiration and a source of hope. He turns my face to God so that I can see that God's face, His love, His grace, His mercies, are shining, pouring, washing over me. There is nothing better than knowing that. No matter what, I have peace. No matter what, I have joy. I pray the same for you and thank God for each and every one of you with tears spilling from my eyes. Blessings, beloved friends. It's 0900. Time to call the doctor.