Slow. Seizures Ahead

We are seeing some improvement in Christopher's brain function - his speech is not quite as labored, but he still says it's hard to say the right words.  Typing an update on his facebook page or texting is very labor intensive, and he's very frustrated that reading is so difficult for him.  His sister and several of his cousins stopped by today and took lots of silly photos; that definitely served to lift him from the depression that enveloped him this morning.

One of his neurologists visited today and we were able to have a long Q & A session.  First of all, she made a point to note that what we are seeing in Chris in terms of his difficulties with speech and communication is definitely temporary, and due to the small amount of blood present with the swelling which is now beginning to subside.  She has seen people with much worse post-surgery symptoms fully recover.  Her main concern about the brain mapping is that she still cannot determine whether the focal point (the origin) of the seizures is in the left or right hemisphere of the brain.  The seizures propagate so quickly to other parts of his brain, that it is impossible to tell where they begin.  Chris needs to have a few seizures that begin slow enough to show exactly the origin, or they will have to do more drastic measures such as inducing almost a coma-like state (done by an anesthesiologist), to slow the brain activity down enough to show where the first spark of a seizure ignites.  If they do not clearly locate the focal point, Chris will not be a candidate for surgery to stop the seizures.

CT Scan showing 9 depth electrodes

I know without a doubt that God has brought Chris this far.  I am trusting Him for a miracle that the doctors will get the data they need.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

"...all my days ordained for me were written in your book before one of them came to be."  Psalm 139:16

Sweet Sleep

One of the sweetest things a parent can experience is watching their child sleep.  When they are babies, we are fascinated by the gentle sweetness of their tiny breaths; when they are toddlers, we are amazed that they can be such holy terrors all day and look like angels as they sleep.  I'm learning that watching your adult child sleep holds much of the same mystery.  Sitting here, watching Chris sleep brings on so many flashbacks of his life.  The wonderful playgroup days, the mischievous Little League days and even the exciting high school football days.   This precious son that I love more than my own life is in a state of recovery from a surgery that may serve to ultimately give him the rest of his life back.  I try to remember that as I struggle with the present reality that my articulate son is now struggling to put his thoughts into words.  Every sentence is labored and sometimes abandoned because it's just too hard to speak right now.

The nursing staff here in the brain mapping unit are well above top-notch.  They are voracious in their commitment to advocate for their patients, and their compassion is immeasurable.  While each day brings uncertainty in the process, they continue to assure us that they have seen it all before and they are taking the necessary steps to make sure Chris comes through this process healthy and victorious.

At the insistence of the nurse today, the doctor ordered a CT scan.  It revealed a very small patch of blood that is the culprit in causing Chris's confusion.  It is not continuing to bleed, and will dissipate and be absorbed back into his body.  There is also some residual swelling that always happens with surgery.  He was given a steroid to control that and we hope to see improvement over the weekend.

The kind and loving words I am receiving from family and friends lift me up every day.  As I read the sweet responses to my email updates, I am so grateful to have so many who love and care for us. 

"Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness."
(Lamentations 3:22-23)

Here's to a new morning!

Your Prayers Lift Me Up

I don't have many words tonight except to say we are being held up by the prayers of family and friends.

After a relatively quiet night due to the fact that Chris was heavily sedated, today I got ready in the hospital room bathroom to spend the day at APU training for my new temporary job there.  Jim arrived at 7am and spent nearly 14 hours here with Chris.  We are two ships passing in the night right now.  Tomorrow I will get up and do it again, as my new employer has been kind enough to give me the days off needed over the next two weeks to have family visit for my brother's burial, which was planned long before this surgery was scheduled.

I am ready for my night shift of sleeping lightly so I can awaken if Chris has a seizure and help prevent him from reaching for his head in the midst of it.  He is still on pain meds, but in between naps is a bit more alert and responsive, even telling us what he remembers about going in to surgery.  Of course, his ever-present charm is coming out as well, and the nurses are just crazy about him.  The most difficult thing for us is to see our highly articulate son struggle to find the words for a simple sentence.  We are told this is temporary and a result of the combination of meds along with the natural slight swelling that occurs after surgery.  My earthly hope rests in that word ~ temporary ~ right now.

His nurse tonight told him she has seen so many patients helped by this surgery, and the end result is worth going through the hell he is enduring now.  So many of you have told me your specific prayer was for peace to wash over Chris at this time.  I am seeing that in him now - it's a tremendous difference from last night, when he was very agitated and trying to pull out IV's, etc.  Tonight his body is relaxed, hands are clasped together over his stomach, and he is sleeping peacefully.

Surgery Ain't No Picnic in the Park

It's 8:30 pm and Chris is finally still.  This is a good thing because the seizures have decreased for now.  I know you're thinking, "but he's in there to have seizures," but he was having them too soon after surgery, and he was having them just a few minutes apart.  He's had 20 seizures in the 6 hours they've been monitoring him.

Today was a pretty rough day for Chris - after what he described as "the worst night of my life" last night, his pain level this morning rocketed to a 10 out of 10 while he was having an MRI.  The MRI looked good, but he had to stay in ICU until about 1:30 so they could deal with the pain, nausea and vomiting that ensued.

After getting him hooked up to the EEG, the charge nurse was concerned that he was having seizures already.  After calls to the neurologist and 2 doses of Ativan, they pushed some extra Keppra into his IV to try and stop the seizures.  He is heavily medicated and pretty much unable to do anything but mumble a short word to the nurse when he's checked on.   Right now, his body needs to rest for a couple days.  Also, we want to avoid what's called "status epilepticus" where the brain can't stop seizing.  This gives them no information, and can be quite dangerous.  When Chris does have seizures, his brain needs to be at rest in between each one so the doctor can clearly see where the seizures begin.

Praying that he will sleep, sleep, sleep tonight with no seizures.  In a couple days I'll be praying that he will have seizures all night, with a bit of rest in between.

Life's funny that way, isn't it?

Stereotactic Implantation yada yada yada...

The reality of surgery is that you are never quite prepared for what it really looks like.  Or feels like.  The surgeon can tell you all he knows about how the procedure is done and how you will feel when you wake up, but really, until you experience it, you will never know.

I'm sitting in the ICU right now, watching my head-bandaged 20 year old son sleep.  His face bears a 5 o'clock shadow of whiskers, outright denying my motherly instinct that this is just my baby lying there.  This is my baby.  My big, 6 foot 4 inch, 240 pound baby of a young man who is insisting on moving forward with brain mapping in the hopes the doctor will find exactly where in his brain this pariah of a misfiring neuron lies, so that it can be removed. Forever.

Even with all the surgeries various members of our family have endured, I forgot to remember that surgery is surgery and there is inherent uncomfortable-ness that goes along with it.  If I could be lying in that bed instead of Chris, I would.  If I could take on the intensity of his post-surgery headache, I most certainly would.  But I must just watch.  And wait.  And trust God for his mercy.  And hope that the doctors are making all the right moves.

So here we are, in Phase 2 of the brain mapping process to determine whether Chris can have resection surgery to remove part of his brain.  Remove part of his brain.  Yeah, just let that sink in for a minute.

The order was for "stereotactic implantation of depth electrodes into the cerebrum."  Ten electrodes were planned for; only nine made the cut, so to speak.  The tenth incision gave the doctor too much trouble with bleeding at the incision site, so he nixed that one.  Better safe than sorry.  I like this guy.  The brain mapping part will commence after an overnight in the ICU and a follow-up MRI in the morning.  Chris will be bed-bound for about a week.  Meds will be reduced until he starts having seizures.  They need to see about 3 or 4 episodes where they can clearly determine the origin of the spark that ignites the storm.  The misfire.  The pariah. 

So it can be removed.

Brain Mapping 101

(NOTE: Forgive me, but I started this post on August 19th and never posted it. Well, then.... so much has happened since then.  BUT, just to help you get caught up, I'll post this one first, anyway....)

Well, here we are.  On the cusp of night #2 of the inpatient EEG.  Chris arrived at the hospital yesterday, which was mostly uneventful.  But going off Tegretol cold turkey was the plan, and as expected, the seizures began around 5am, as he slept.  During his awake hours today, very little happened but Chris has already told me to be prepared for a long night; he's feeling the storms in his brain going on constantly.

These simple partial episodes are just a warning of what's to come. The complex partials are on the way.  Hoping and praying for no tonic clonic tonight.  Those freak me out more than necessary.

We are here for Phase 1 of the Brain Mapping Program and for a safe medication switch, when the high dose of Tegretol will be exchanged for Trileptal in an attempt to keep side effects at a minimum.  Ultimately, the goal will be surgery to remove the seizing part of the brain.

The staff here talks about the miraculous results of seizure-free patients after surgery.  One PCA who has been in this department for nine years had goosebumps as she told us about the young people Chris's age who have been rescued from the grip of their seizures and now live life with no seizures and no meds.

(Footnote:  Chris stayed in the hospital for 6 days for this initial brain mapping, and had hundreds of seizures.  He had many visitors and could get out of bed and go as far as his "tail" of wires hooked to the EEG would allow.  A team of doctors met in September to discuss his case, and determined they could move on with Phase 2 of brain mapping, which involved implanting depth electrodes in his brain to find where the seizures originate.  It's a long process, but Chris is ready to move full speed ahead!)