Reformissionary

Family Updates

Two quick family updates.

Molly & Chiari: Molly has received a prescription to get some MRI's done and now has an appointment on Thursday of this week.  These will be sent to her surgeon to see if they note any significant changes or problems.  They are also going to check her CSF (cerebrospinal fluid) flow to see if/how much it's blocked, I believe through another MRI.  If there's anything I know about Molly and her Chiari issues it's that laying still in one position for long at all is very painful and frustrating for her.  Getting the MRI's will be an ordeal.

Her symptoms have been pretty bad.  Every day is painful and she often feels nauseous (a symptom she never felt before with Chiari).  The one thing we are happy about is that she isn't struggling much with balance issues.  A few bad stretches, but not like last year.  Thanks for your prayers.  I'll update when something happens.

Elijah the All-Star: We finally got the schedule for Elijah's all-star games, not that you care.  But we were very surprised to find out the first game is this Sunday morning at 9:30am.  We knew he could have a Sunday game, but we never assumed it would be in the morning.  We felt compelled to have him play since they only have a 12 player roster and at try-outs they said you have to be able to play all games (that was before the schedule came out).  But we also felt compelled to show our son and those on the team that we have priorities that trump baseball.

So I pulled Elijah in to my office and showed him the schedule.  He looked at me puzzled by the Sunday morning game.  I asked him what he thought he should do.  He said, "Go to church."  No fight, no tears, no depression, no struggle, no whining.  He has his priorities in order.  I'm very, very proud of my little boy, and this Sunday we will be missing an all-star game in order to worship the one who made the stars.  Geez, that was cheesy.

Here We Go Again

I was hoping this post would never come.  It has.

My wife, Molly, has started to see symptoms from her Chiari I Malformation again.  It's pretty close to as bad as her pre-surgery days.  Her surgery was July 13th, 2007.  She is having great tension in her neck and shoulders.  Her hands and feet become numb if she sits for long at all, like a 5 minute car ride.  She is having some balance issues and minor issues with thinking and completing thoughts.  She feels all day long like she has chugged a bunch of coffee and is jittery and tense.  I watched her on both Sunday and Monday barely able to hold a bottle of contact solution as she tried to get contacts in her eyes.  Her last remaining symptom from last year, a kind of body jolt, has multiplied and become more severe.  So far the symptoms have only gotten worse day by day.

I know many of you prayed for Molly and our family last year.  For a year she has been nearly symptom free.  Things have changed, and we don't know why.  And we don't know what this means for the future.  She could see her symptoms go away on their own.  We've been told that can happen.  We also know it isn't odd for someone like Molly to have multiple surgeries.  The doctor has asked for new MRI's to check her Chiari and CSF flow.  After he views those we should know more.  We aren't sure how fast we will get the prescription and hear from him.  I will keep you posted.  Please pray.

Here are my posts about Molly & Chiari from over the last year.

Molly & Chiari: One Year from Diagnosis

A year ago yesterday I put up my first post about my wife Molly and her diagnosis of Chiari I Malformation.  A year ago today it was confirmed by her neurologist as her official diagnosis.  Her brain surgery went down on July 13th, as you may remember from this epic post, "Operation Chiari Freedom," describing that day and the hospital stay.  (Read all the old chiari posts.)

Many folks have asked for an update on Molly and here it is.  She is doing very well.  She is starting to eat with utensils again and is responding to my dog whistle.  LOL.  C'mon!  That's funny.  Actually she is nearly symptom free.  Her one remaining symptom is a jolting thing she does without warning.  I have explained it before, but it's essentially like a pee shiver (how descriptive of me), or that moment when you are falling asleep and jolt yourself awake.  The difference is it's slightly more pronounced and very random.  We have no idea what it is and haven't seen a marked increase in the symptom, so we aren't too worried.  But we watch it.

Over the last year Molly has had multiple opportunities to speak with other folks who are facing Chiari surgery.  Some have emailed, some have called.  My blog is like the 16 hit on Google for "chiari surgery" and can be found other ways, and often is.  As my posts tapered off so have some of those who are emailing, but they still contact us here and there.  It's a neat ministry for her.

A year later our main feeling is a deep thankfulness to God for his goodness and mercy.  They have pursued us.  As we have more to say about Molly & Chiari, I will let you know.  Until that time we thank all of my readers and those who have been praying for Molly and our family.  It's good to be facing this summer with renewed joy and fewer doctor appointments. :)

Just Another Chiari Update

Just wanted to quickly update you on what life looks like several weeks after Molly's surgery. 

The three biggest problems right now are...

1. Molly can't lift much of anything.  Still under 5 lbs right now.  That's to keep from ripping her neck muscles apart.  Once we were out to eat and she was stranded at the counter with a tray full of food and drinks that was too heavy.  The kids and I were like, "Where's Mom?"  I went looking and found m'lady looking in need of rescue.  Fortunately I have muscles to spare!
2. You know how you will go to bed and just start to drift off to sleep and then jolt yourself awake?  Molly still has a little of that.  That's really the only remaining symptom, and it's so insignificant we usually don't even talk about it.
3. Molly is just dying to start working out more, but can't do much yet.  She is walking on the treadmill and that's about it. 

Yeah, after an awful summer and long post-surgery recovery life is pretty much back to normal.  We took a train trip into Chicago yesterday with the kids and she did great.  We don't assume there will never be any Chiari related stuff in our lives again.  We know that symptoms could come back someday.  That keeps us on our toes and thankful for the time that things are great, like now. 

By the way, the best question we get asked is, "So, what did you guys do this summer?"  Love that, because we will unload the story on people and enjoy their disbelief.  It's quite the conversation starter.  It also stops conversations.  Like when someone is whining about their silly problems and I drop the Chiari-bomb all over them.  They suddenly have nothing to say about their lives. :)

I have a short list of things I'd like to reflect on now that we have some distance from the symptoms and surgery.  I'll try to get them written sometime soon.  And the next appointment with the surgeon is in mid-October. 

What's Your Excuse?

It's All Good (Post-Surgery Appt)

Great news today.  Despite another awful drive to the U of Chicago (rain, accidents, ugh), Dr. Frim and his colleagues thought things were great and that Molly's few remaining issues were normal. 

Actually, the only issue that really concerned us was lightheadedness when Molly stands up.  Dr. Frim told us that lightheadedness is not only not a bad thing, it's actually a good thing.  Now that the brain/brain stem area is decompressed her CSF (cerebrospinal fluid) just falls out of her head, so to speak, making her lightheaded.  To have this problem at times post-surgery means the area is sufficiently decompressed.  And eventually her body will compensate and this issue should go away.  Awesome.

So, yeah, really good news.  We are very, very thankful to God for his many blessings in recovery, but also for the peace we have had throughout these two scary months. 

Things are going so well we are beginning to plan a train trip into Chicago with the kids in a couple of weeks (or so), a trip to see my family soon, and more.  Trust me, Molly is still taking it slow.  It's still months before she can lift anything of any weight at all and she is being extra cautious.  But things like walking, driving, and doing most other normal life activities are based on how she feels.  And she feels great.

Thanks yet again for praying for my wife, for me and for our kids.

Post-Surgery Appointment

We are headed out (with our kiddos) at 7am for a 9:40am appointment with Molly's surgeon, Dr. Frim, at the University of Chicago.  We expect to hear only good things and have a handful of questions for him.  On our way home we will, Lord-willing (and we're sure He is!), stop at P.F. Changs for the greatest Chinese food on the planet. 

Thought this would be a good time to put up our favorite "get well" card.  Love this...

Molly, Music and Misc Links

I tried to put this up yesterday, but I've had no shortage of computer issues.  A Molly update and links on the way...

Molly Update

She had brain surgery 12 days ago and for the most part is feeling good and getting around fine.  The stuff she is dealing with right now are lightheadedness when she stands up, some neck pain, and some numbness on her scalp.  Her balance is doing wonderfully.  I was very surprised yesterday as she tested what she can and can't do.  She is experiencing no numbness in her limbs as she had before.  It seems the rest of her symptoms have either gone away or been depleted, but we are still taking our time to determine exactly what will happen with those. 

She felt well enough to go out to dinner with me last night to celebrate our 14 year anniversary.  Man, I love my wife.  This picture was taken yesterday.  Want to see what the incision area looks like?

Cheap, Good Music

Personally, I don't download much music.  I buy CD's.  But the temptation to download has just increased.  iTunes now has some great CD's at very low prices, which is a new thing.  At the iTunes store click on the "Next Big Thing" box and you will find some great CD's for $6.99 by Peter, Bjorn and John, Brandi Carlile, Hot Chip, and LCD Soundsystem.  Really great deals.

Links

Ed Stetzer is blogging.

I think Justin Taylor has written some great stuff on Genesis: Origins.

Michael Foster kindly links to all of Driscoll's Death by Ministry series.

Billy Graham preached "Sinners in the Hands of an Angry God" (Edwards) in 1949.  The Jonathan Edwards Center at Yale has provided analysis.

My wife and I have signed up for Stand: A Call for the Endurance of the Saints.  Here are some Desiring God pre-conference videos.

Molly on the Mend 7.18.07

We've been home for two days now and Molly is improving quite a bit.  She has been up and around all day today, rarely taking a rest, and often itching to get up and be with the family.  My brother and his family watched our kids for 6 days and brought them home yesterday.  Great to see them and hug their neck (sorry, spent some time in the south).  Mostly I'm just really encouraged today by Molly's progress.  She has still had some head/neck pain, but nothing unexpected.  I can take off the top dressing tomorrow and she can wash her hair for the first time in a week.  She is looking forward to that!

A few of Molly's church friends came over for a visit this afternoon.  She enjoyed the visit and let me leave the house for a bit to work. 

We have been very blessed as our church members have planned many dinners for us beginning tomorrow.  I think they have them planned for a couple of weeks.  Nice.  And how cool is this, someone out of the country sent us $100 to buy the kids something after they got home.  So many good things out of a bad situation.

I'll try to keep you all in the loop, and thanks for praying.

Operation Chiari Freedom

Section one, "Operation Chiari Freedom Updates" -> essential details about Molly, surgery, and recovery. This is the first and easiest place to keep up to the moment on what is happening with Molly. 
Section two, "The Husband Updates" -> stories, reflections, photos, etc.

MONDAY, JULY 16th

4:30pm <> We are home.  The drive home had very little traffic.  We made it in under 2 hours.  I think we arrived at 3:30pm or so.  Molly didn't much enjoy the ride.  It was difficult for her to sit comfortably for that long in stressful traffic.

She is now in bed and I expect her to stay there most of the time until the kids come home tomorrow (not sure what time yet).  So if you are local, she will not be ready for visitors for at least another day or two. 

This is my last update.  We appreciate the many comments and can't possibly reply to all of them.  Molly has heard me read most of them aloud, but won't remember much.  I know that when she's rested and up to it she will be reading all the updates and all the comments again.  She was so happy to hear from you all during her hard days and nights.  We appreciate your prayers most of all.  We have a God who hears us when we cry out to Him.

Operation Chiari Freedom has been a success.  Now we move to many weeks of recovery.  As you think about Molly, please pray the symptoms of her Chiari will go away and she will continue to get better.  We'll be sure to keep you up to date, but with less frequency. :)

God bless you.

12:28pm <> We're going home!  A nurse practitioner just talked with Dr. Frim, who is in surgery all day, and said we are good to go.  I have to watch Molly for apnea, but otherwise she is just tired a lot and has some pain, and that's to be expected.  We will either be at Dr. Frim's office this Thursday or next Thursday to get the dressing off of the back of Molly's head (see photo) and then she will have the "ok" to wash her hair and stuff. 

Thanks for your prayers, this is the last report from our south Chicago outpost.  We should be leaving in the next 30-60 minutes (Lord-willing) and be home by, oh say 4:30pm or so-ish. 

12:06pm <> With Molly resting most of the time, and the possibility of coming home today, I think it's pretty clear that having visitors really isn't an option.  Plus, anyone who wants to visit is from 2-3 hours away and it just wouldn't make much sense.  So thanks for your desire to come here, but it just didn't work out.  Next time Molly has neurosurgery she will be sure to squeeze you in.

11:56am <> Nothing new.  Molly is sleeping a lot.  No word from Molly's neurosurgeon, Dr. Frim, or anyone else for that matter.  As soon as we hear I'll send you all an update.

9:48am <> Molly walked up and down the hall with a physical therapist to see how she's doing.  It's the first time I've seen her walk without having to hold on to something since this whole deal began.  Her balance is still an issue, but Molly has ALWAYS had balance issues.  Dunno if those will change or not.  The PT didn't seem too concerned about it, but enough to prescribe physical therapy after the hospital stay.  She did say to take a couple of weeks to see if it's needed or not.  Things could very well get better as the swelling goes down and as she learns to trust herself walking again.  She also went up and down some stairs and did just fine.  Slow and steady, but just fine.

9:10am <> Molly is resting a lot this morning.  They woke her up many times last night and she is still quite tired.

8:10am <> Molly is up and other than a bit of a headache she is doing fine. 

The only concern this morning, as the neurosurgery residents stopped by, has been the problem Molly has had with a sleep apnea type thing.  I noticed Molly with this a lot that first night in ICU, but I haven't noticed it since. They may be putting a breathing thing on her just to see how she does sleeping.  I feel like there isn't a problem anymore, but they are being a little more cautious. 

Otherwise, it's possible that Molly could go home today!  One of the neurosurgeons asked her if she wanted to, and I told them yes. :)  We'll go home when they think she's fine, and if that's today we will be very thankful. 

SUNDAY, JULY 15th

3:22pm <> Molly is resting very comfortably at the moment.  We went for a hallway walk a bit ago.  She did fine, slow, but fine.  She's eaten twice today, more at lunch than breakfast.  Many improvements today.

10:58am <> Molly wanted everyone to see the comfort blanket our daughter Sarah made for her recovery.  She worked on it for weeks with a neighbor/church member (Sharon) who has been such a blessing during Molly's ordeal. 

Sarah, Mommy has this in the bed with her at all times because she loves it, and you, so much.  Thanks sweetie!  Tell the kids that we love all of you and will talk with you soon.

10:10am <> Guess who is starting to feel a little better?  Molly.  Headaches are still solid, but not nearly what they were.  She is keeping medicine down and just had some breakfast (a little bit of breakfast sandwich, mostly some scrambled eggs).  Big steps for her.  She also is a little more peppy and conversational. 

SATURDAY, JULY 14th

9:49pm <> Very long, very hard day.  Molly's getting some medication right now, including a shot in her stomach (blood thinner).  Ouch.  My cot is set up and ready.  So glad to be in the private room.  Hopefully things will get a lot better for Molly tomorrow. 

One last word.  Molly is NOT ready for visitors yet.  Talking to people makes her throw up, including me!  So please don't stop by until I give you the "thumbs up."  And I will when she is doing better.

G'nite.  Enjoy the Lord's Day.

8:05pm <> Molly is still terribly nauseous.  Her head is throbbing along with her pulse (your brain does that, you know).  She is miserable right now and needs relief.

They are giving her two nausea medications now, and adding Benadryl to help with itching.  I can't remember the name of the central pain medication Molly is on with her thumb trigger, but it is supposed to be 10x as powerful in pain relief as morphine.  That means that even as that medicine is probably making the recovery more miserable (vomiting and itching), it's so much better at pain relief that those side effects are acceptable.  Ugh.

6:02pm <> I just want to add that the private room is such good news because I was thinking of going back to Woodstock tonight, or at least a hotel.  Molly just doesn't feel comfortable having me away, so she is really excited.  And since I've been sleeping in my van until now, I'm excited too!

5:35pm <> Sheesh, you guys are persistent.  God is getting no rest because He has now placed Molly in a private room!  We told our nurse and she said there probably isn't one available.  Five minutes later she comes in and says, "We're moving! Let's go! It's just across the hallway." 

FYI, Molly's room number is TS407-1.  A few folks have asked about sending flowers so I thought I would put it out there.  Molly really has the desire to eat piles of hot wings, so you may want to send those too. ;) And please DON'T CALL the room.  It will just be irritating at this point to my nauseated and exhausted wife.  Email and blog comments are getting to her fast enough.

Thanks for praying. 

4:34pm <> Molly put on her glasses a little bit ago and her vision is very blurry.  That has freaked us out.  But a visit from the neurosurgeon has assured us that it happens to some Chiari patients because the pressure in the back of her brain has been decompressed and her brain is learning not to compensate for the pressure.  She will need a few days to adjust.  Please pray her vision will be restored quickly, her headaches will decrease in pain, and her nausea will go away so she can start eating again.

2:41pm <> Molly is in a regular room now.  Feels good.  She has a roommate but she is leaving in minutes, so we will have no one in here for a while at least.  Still hoping for a private room at some point, but we aren't holding our breath. She is a little more peppy, though still struggling with bad headaches and nausea. She almost threw up after the bed ride to her new room.  But the fact that she came close and didn't hurl is a good sign, I think.  She also wanted me to let you all know that her nose it itchy.

I'm sitting in a high-back chair next to Molly's right side.  We are on the window side of the room.  That's nice because Molly hasn't seen the sun since early Friday morning. 

9:57am <> Our new nurse (I can't remember his name) said they have a bed for Molly already, but not in a private room.  We know they are hard to come by, and may be able to pick one up later or on another day.  Our request will stay and they will let us know if one opens up.  But for now the plan is a normal room.  We'll work with it.

9:43am <> One of the neurosurgeons we have met with before, Dr. Yamini, has met with Molly and he feels all the symptoms are pretty typical.  He felt good about how she is looking and feels she can move to another room today.  The neurosurgery residents met with Molly and thought she may like to stay in ICU longer, but I don't think that's what's going to happen.  I think by later today Molly will be in another general hospital room.  Hopefully a private room.

7:38am <> Beverly is on her way out and a new nurse will be taking over.  Molly is still in a lot of pain.  She has been given calcium, and is still getting magnesium and potassium.  She's sleeping now. 

5:09am <> Molly's ICU nurse, Beverly, has come in with new doctor orders to get Molly's electrolytes up.  Her labs show she is very low in calcium, and somewhat low in magnesium, potassium, etc.  She said that when these levels get low the heart doesn't do well.  Her BP has been a little low as well as her heart rate.  Molly is also having some significant headaches.  She says the pain is 9/10.  Beverly just said she is going to call Molly's doctor to see if anything can be done, but she can't take Ibuprofen until later on today or tomorrow.  I don't assume there is anything too major to worry about, but things could be better.

FRIDAY, JULY 13th

9:32pm <> Molly has been nauseous quite a bit.  Dr. Frim said this was a possibility.  Other than that she is doing ok.  It really hurts her to move her head, as expected. 

Molly's overnight nurse is Beverly.  Her approach is both structured and kind.  She said I could stay in the room with Molly all night if I like, but I can't sleep in here or I get kicked out.  That works fine for me.  I'm going to try for a couple of long naps overnight and work on a full night sleep tomorrow.

5:46pm <> After 4 hours of waiting Molly is finally in ICU.  They brought me up to recovery (where they shouldn't bring me normally) at about 4:30pm and then walked down with her at about 5pm.  She looks great and has been both smiling and throwing up.  I'm now sitting next to her in ICU.  She has ALP (Alternating Leg Pressure) wraps on her legs to prevent blood clots, oxygen in her nose, IV's in both arms, those awesome heart monitor sticker things all over her chest, and a morphine pump in her right hand.  Nice.  The back of her head has a strip of tape covering the incision and the back of her hair is now pink from blood.  Her very friendly ICU nurse is Carol. The photo is from my cell phone and taken in the recovery room.

3:24pm <> Talked with the recovery room nurse and they are still waiting for an ICU room assignment.  She didn't know how long, but she said Molly is doing fine and sleeping. Molly got out of surgery at 1pm, officially.

2:02pm <> I just talked with Dr. Frim a few minutes ago.  He said the surgery was as boring as he hoped it might be.  Uneventful.  Happy to hear that.  He said Molly is recovering fine so far, looks comfortable, and is awaiting a room. 

Now, as I said on my 1:30pm husband post below, we expect her to go into ICU.  But Dr. Frim said that the bed Molly was supposed to get in ICU was taken by an emergency neurosurgery case (See my 12:12pm husband update below.  I assume that was the emergency case.).  And I'm not really sure, but it sounded like it might mean there won't be an ICU room opening up.  That doesn't seem right, and it may just be the way I heard it, but who knows?

So we await a room.  I assume we may be waiting longer for a room than previously thought.  3 hours?  More?  Up in the air.  Would you mind praying her into a room asap?  That would be helpful. 

12:50pm <> The family waiting room attendant must read my blog because 5 minutes ago she asked if she should call the surgical department for an update since I haven't heard anything.  So she brought me out and asked me to wait at a house phone for a call from them. 

As I waited surgery called (maybe they read my blog too) and said Molly is coming out of surgery and is on her way to the recovery area where she will be for post-op observation and where she will wait for a room in the ICU.  They expect Molly to be in recovery for 1 1/2 - 2 hours.

Thanks for praying and I will update as soon as I know more.

12:25pm <> I expected to hear a mid-surgery report from the doctors, but didn't get one.  Not too thrilled about that.  Also should mention that the surgery has now passed over the 3 1/2 hour mark (the duration we were told to expect).  Not worried, but not exactly at ease either.

10:39am <> Nothing new, just waiting and praying.

8:57am <> Update from the family waiting area attendant, who just heard from the doctors.  The surgery started at 8:45, so the timing of what is happening in the surgery from my previous update is probably actually happening now.

8:10am <> We left on time this morning and were way early (since there was little traffic).  We were happy being early and everything else went as planned.  Several nice people prepped Molly for surgery in pre-op.  Sally, the resident anesthesiologist for the main anesthesiologist, tried three times to get an IV started and couldn't get it.  It wasn't a problem for Molly since she was actually encouraged that Sally was younger and someone she could identify with.  Honestly, Molly does have small veins. :)

Right about now Molly is bottom up with pins in her head and a metal framework of some sort propping her head up.  I'm also sure the incision is open and they are working their way through tissue and muscle on their way to the bottom of the skull and the top of the spine.  Soon they will be sawing through her skull to thin it out and then remove it.

THURSDAY, JULY 12th

6:30pm <> We received and email from the nurse a little bit ago. Surgery will begin between 7:30 and 8:00am.  We will be getting up at 2:30am and leaving by 3:30am to get there by 6:20am.

================================================

MONDAY, JULY 16th

9:40am <> The last 24 hours or so have been good.  I'm not really feeling concerned for Molly as much as I am eager to see her feel better.  I think that when she gets home (maybe later today???) she will get a lot better sleep and will actually recover faster. 

SUNDAY, JULY 15th

3:11pm <> Hey all.  Thanks for your continued prayers.  I wanted to write more updates but I've been occupied. 

Last night was great.  The cot is comfortable enough, I wake up whenever the nurses are in the room to keep up with how Mol is doing, and then I got back to sleep easily.  All good.

Molly has really been great today.  Nausea is mostly gone, we've talked a lot, she's eaten two meals, and we've walked the hallway to get her moving again.  She's sleeping now, peacefully. 

I got Subway for dinner last night and walked a block down to Powell's Used Book Store (Hyde Park).  Great selection of used stuff.  I didn't buy anything.  Maybe I'll go back :)

I got Molly some magazines today for when she feels well enough to peruse them.  Picked up her clothing and makeup from the van and brought them to the room.  Now I'm trying to figure out what to do while she sleeps.  Hmmm...

SATURDAY, JULY 14th

4:32pm <> After waiting and waiting for Molly to move, her nurse said that it would still be a couple of hours.  So at about 11am I left the room for a couple of hours to eat and nap.

I hit the UC cafeteria for some pepperoni pizza, a cake doughnut with chocolate frosting, and some Coca-Cola.  Too much money, but a full stomach felt nice.  I hadn't eaten since last night.

While eating I perused the UC hospital and campus map.  I found the post office and the university bookstore (a Barnes & Noble).  So after lunch I headed to the post office to send a letter to our kiddos and then to the bookstore to see what they had.  Nice little B&N.  I'll probably be over there soon to pick up some magazines for m'lady.

Then I went out photographing the area.  See all my University of Chicago and hospital photos here.

Exhausted, I retreated to my van and crashed in a well-reclined seat for about 25 minutes.  All of you who prayed and helped us get a van didn't realize you were also getting me a motel, did you? :)

Feeling more rested I returned to ICU to find Molly within minutes of leaving for her new room.  It appears there won't be anyone added to her room for a while.  So that's kinda like a private room, eh?  We are going to ask them about the possibilities of keeping the room private for a while.  I have seen at least two rooms totally empty so we may be in luck today. 

Right now I'm sipping Canada Dry Ginger Ale with those little ice pellets like they give to Molly.  I only drink ginger ale on airplanes, but I made an exception because it was free.

Despite my desire for Molly to feel much better than she does, we are both just so thankful for the many ways God has blessed us.  Our kids are having a blast with family in Pontiac, Illinois and we get to be here totally confident they are being loved.  We have everything we need, fully supplied.  The doctors and nurses have been great.  Thank you for your prayers.  We know God has been taking care of us.

10:22am <> I'm really tired.  Every time I think I can go get something to eat or take a nap, something else is coming that keeps me in the room.  I had to wait for a long time for the neurosurgery folks to come by, now Molly is heading to another room and it's hard to know how long (or short) until we go.

5:35am <> Last night I left at about 7:30pm for something to eat.  I had waited too long to get something at the hospital.  Anyone been to Checkers before?  We had it years ago.  Good, greasy burgers and fries.  Had to try it again.  And since I had eaten very little all day, I decide to get the loaded fries.  Yeah, I know.  But wowwy weewuh, they were good.  The burger?  Meh.

I came back and sat with Molly for a while and then crashed in the van sometime past 10pm.  No, I didn't crash the van, but crashed in the van.  And yeah, I know.  But with few housing options around and a strong desire to stay close, it was my best option.  I could almost fully lay out with the back seats folded into the floor.  I had two pillows to sleep on and had most of the windows blocked out so the parking garage lights wouldn't keep me up.  Unfortunately it was the sweating and the loud noises that kept me awake, at least for a bit.  But then I slept for about 4 hours and it felt good.  I woke up, changed clothes, and headed back to the room.  I made it here at about 4:15am.  Hopefully I'll get a nap in later today.

Right now I'm just sitting here in her room, which is getting brighter as the sun rises, following the Tour de France online, making sure Molly keeps hitting the morphine button, and praying.

FRIDAY, JULY 13th

3:33pm <> I had to get out for a bit and grab a bite.  Bagels and cream cheese at some nice hospital food place.  Not a cafeteria, but a Panera-type restaurant.  I also grabbed some parking sticker things that let me park in the parking garage at a discount. 

I'm developing a headache from my stressful day, but I'll be alright.  I'm having a hard time relaxing with Molly's room situation.  I just really want to see her.  Some nurse's voice over a phone telling me she's fine won't cut it.  And I just want her to have a place.  And I need a change of scenery!

Thanks for the comments, emails and text messages.  They have been encouraging.

1:30pm <> While surgery is over, I realize this is still a very long road ahead.  We have 24 hours (or so) in ICU coming up.  Then a few more days in the hospital.

Obviously the most important issue is Molly's recovery, hoping the symptoms are relieved and hoping there aren't any post-surgery complications.  One thing we really hope for is to get a private room at the hospital after her ICU stay.  Without a private room I have to keep to the visiting hours (9am-9pm, I think) and probably will have to get a hotel.  There aren't any recommended hotels within 20 minutes of here.  But with a private room I will be able to be with Molly day and night, to stay the night here, etc.  It will cost us some of our own money, but we hope it works out. 

We can't save a private room, only ask for one when she is being moved out of ICU.  And it's unsure whether or not one will be available.  So please pray that we can get a private room.

12:12pm <> The younger couple is back, and they aren't as young as I thought.  Donna and Alen are probably in their younger 40's and they are here with Donna's son William, who has hydrocephalus.  He is now 21 and has all sorts of problems.  He has had three surgeries (all neurosurgeries, I believe) in the last month.  As you pray for Molly, will you mention William, Donna and Alen.  They aren't church-goers, but said they would appreciate the prayers.  William went into surgery about the same time as Molly.

11:40am <> I have found great comfort praying through Psalm 4.

11:20am <> You can experience being here with me.  Click for larger image AND notes about what you see in the photo.

10:58am <> The family waiting area here is large, and many of the seats are full as we all wait for loved ones.  I noticed that many of the people waiting are older.  I feel quite alone in my youngness.  I was sitting near a younger couple who must have had a child in surgery, but they were here and gone in an hour or less.

I'm very scattered mentally right now.  I pray, then check the Tour de France online, then get up and walk, then read my Bible, then email or call someone, then pray again.  It's an overstatement, but it seems this all happens about every 10 minutes and then starts again.  I just can't sit still.  Understandable, I guess.

I'm continually trying to stop myself from thinking of exactly where they are in the surgery.  I've seen a video of the surgery so I can picture it.  But when my wife is there it's too much for me to imagine.

9:35am <> Help from friends...

First, a friend just sent me this John Piper poem...

Not grace to bar what is not bliss,
Nor flight from all distress, but this:
The grace that orders our trouble and pain,
And then, in the darkness, is there to sustain.

Second, I just heard Alistair Begg quote Charles Spurgeon...

The keys of men’s hearts hang up in the narrow chamber of suffering. And he who has not been there can scarcely know the art of opening the recesses of the soul.

9:18am <> Pre-surgery photos.  Click for larger images.

8:40am <> It's been a long morning.  I'm tired, but too nervous to rest.  It's nice to be able to blog here since it helps me stay busy.  I can't do anything without pausing to pray, and as soon as I finish I'm ready to pray again.  I'm so thankful for everyone praying out there. 

Joe emailed early to say he is praying.  Many others have emailed in the last few weeks, and we are thankful for all of you.  Tom Ascol, Justin Taylor and others are asking for prayer for Molly.  Gregory Pittman is asking if live-blogging brain surgery is a first, but he is also asking for prayer.  Thanks guys.

What am I going to do now?  Dunno.  I will be pacing and praying a lot.  Freaking out.  Waiting.  I have a pager on my hip in case they need to get a hold of me.  You never know when something urgent might come up. 

THURSDAY, JULY 12th

6:30pm <> Some errands today and a lot of preparation. Just finished dinner at our favorite local restaurant: Pirros. Good stuff, but we haven't had much of an appetite today. 

Thanks for your prayers. The second half of our day today has been an emotional mess. The weight of what's happening in the morning is fully upon us.  I have this gut-wrenching nervous thing happening every few minutes, but I know that's a pretty normal thing.  Molly's symptoms have been less friendly the last two days, but she's getting by.

We really, really miss our kids.  Dropped them off yesterday with family a couple of hours south of here.  They are in good hands, but any hands other than our own aren't good enough.  Got home last night and had to take Molly to get blood work done.  Then we went to see the new Harry Potter movie.  That was fun, though it was really hard for Molly to sit through the whole thing.  She's a trooper for witches.  :)  Harry Potter, and now Friday the 13th surgery.  If only it were also Halloween!

Links and Stuff

A handful of things that you need to know, hear, see, or read...

- Tonight I will probably put up a single post that I will update throughout Molly's surgery and hospital stay.  I will try to keep updates at the top of the page with time stamps on the page so you can read what has happened as they happened.  The hospital says it has wifi throughout, so being online and live-blogging the next few days shouldn't be much of a problem.

- Please start immediately downloading Stereogum's tribute to Radiohead's OK Comupter.  It's free and includes some great bands like Dave Bazan's Black Cloud, Cold War Kids, and Twilight Sad.  It's not Radiohead, but it's still fun.  By the way, they aren't going to leave these free mp3's up forever so grab them asap.  Couldn't wait for Music Monday on this one.

- JJ Abrams.  1-18-08.  Nuff said.

- Drew Goodmanson on The Gospel Awakening (file through his posts on triperspectivalism too).

- John Piper on Why We Should Have Courage to Speak About Christ.

- Gary Rohrmayer on Sharpening Your Evangelistic Skills.

- I don't know if I've mentioned it before, bu there is now a version of 2 Ways to Live for kids. 

- Darrin Patrick's The Journey Church has done a service by providing this Keller-oriented Religion and the Gospel.

Music Monday 7.9.07

This is a special Music Monday as I'm unable to do anything without thinking about my wife and surgery this Friday.  So here are some songs I've been playing because they in some way make me think of how much I love Molly.  Some of the songs are how I feel in full.  Some are slightly out of context of our relationship, but maybe a section of the song hits me.  Hope you enjoy.

"Shameless" by Garth Brooks  (This is our song, a song we danced to in college as we started dating.  Still love the song.)

I have never let anything have this much control over me
I work too hard to call my life my own
And Ive made myself a world and its worked so perfectly
But its your world now, I cant refuse
Ive never had so much to lose
Oh, Im shameless.

"Shelter" by Ray LaMontagne (Love the idea of protection.)

When all of this around us fall over
I tell you what we're gonna do
You will shelter me my love
And I will shelter you
I will shelter you

"If It's the Beaches" by The Avett Brothers (A bit out of context, but I love the ending.  I have watched this video 5 times at least in the last week.)

If it's the beaches
If it's the beaches' sands you want
Then you will have them
If it's the mountains' bending rivers
Then you will have them
If it's the wish to run away
Then I will grant it
Take whatever what you think of
While I go gas up the truck
Pack the old love letters up
We will read them when we forget why we left here

Surgery Date Set: July 13th

Molly's surgery date is July 13th, but let me know how we got there.

Monday we received a call from Dr. Frim's nurse with a surgery date of August 1st.  That seemed so far off, but we didn't have much of a choice.  Dr. Frim, as a pediatric neurosurgeon, is only allowed a couple of days a month for adult neurosurgery.  There was just no other time.  His nurse told us they were trying to find another time sooner, but wasn't able to.  We began to hope for a cancellation that might open a door for an earlier surgery.

Another issue with August 1st is that Dr. Frim would be there for a day following the surgery, but would be out of town after that.  That means the other neurosurgeons would be there for the rest of the recovery time.  That was acceptable (we liked all of them), but not ideal.  Having Dr. Frim perform the surgery asap was first priority, so the recovery issues could flex.

I emailed Dr. Frim's nurse asking about the details and possibilities of an earlier date.  Molly was a bit depressed about another month of struggles.  She responded with some details.  But she also said she saw that I'm a pastor (I guess from my email address) and said this...

Are you a pastor?  I just returned from a mission trip in Reynosa, Mexico. God is calling me to mission work.  I’m going to work about 6 more years until my youngest is done with school.

Lets trust God, he knows the best date for Molly’s surgery.

That was Monday evening.

Tuesday his nurse emailed us with a new surgery date of Friday, July 13th, the original surgery date Molly had a few weeks back.  That means we now have the earliest surgery date, the doctor we originally wanted who is a specialist in the field, and we believe Dr. Frim will also be there for the entire recovery time.  Aren't sure about that last one, but we haven't heard otherwise.  We are very encouraged by this news, and by God's continued mercy.

So we think the schedule will go like this.  A week from today we will be driving to Pontiac, IL to drop of the kids with my brother's family.  We will come back home on Wednesday (11th) evening to get a good night's rest.  Thursday we aren't sure about.  Maybe we will stay in Woodstock another night or maybe we will go into Chicago to stay at a hotel.  We think we will have to be to the hospital early in the morning, but we won't know the surgery time until Thursday the 12th.

Hospital schedule: Molly will be in ICU for 24 hours (overnight) and then 3-4 more days of recovery.  I will likely sleep in the ICU visitor's (waiting) room the first night.  I don't think I'll feel like leaving.  I might spend the next night at home, or a hotel, or maybe even in Molly's room if they let me.  I don't know if she will have a private room or not. 

We think that we will have a family member drive our kids to our house to meet us sometime after we know we will be there.  We hope they will be able to come to the hospital and visit as Molly recovers.

Enough for now.  The idea of "independence" takes on a new meaning for us this 4th of July.  Hopefully the surgery will go well and Molly's symptoms will greatly decrease.  Thanks for praying.

One last thing.  We just found out this week that our refrigerator/freezer is dead/dying.  In the midst of all of this we are now trying to get a new one.  Fortunately, since we live in a parsonage, our church will be paying. :)  But it's still a headache looking for one.

2nd (and 3rd) Opinion Update

Here's what happened at our epic meeting at the University of Chicago yesterday.  It was a long day but a good day for us.

We were seated in our appointment room at 3:30pm, within 30 minutes of Molly's appointment time, so we thought there was no way we be there until 8pm as they suggested was possible.  Yeah, we left at 7:35pm.  Way early! :)  It again took nearly 3 hours to get to the hospital.  At least I didn't make any wrong turns this time.

We first met with Dr. Yassari.  Who is Dr. Yassari?  Another neurosurgeon who we didn't know Molly would see.  He went through the entire exam just as we did with Yamini, checking every movement and symptom afresh.  He was funny too.  After a long visit with Yassari, he came to the same basic conclusions about the Chiari and felt surgery was needed.  He left the room and said he would consult with Dr. Frim and they would return together.  They did, over 1 1/2 hours later.  Wowwy, that's a long wait after a long exam. 

By the way, Dr. Frim is the big cheese.  This is the guy we originally wanted to do the surgery way back just after the diagnosis.  He is the guy our neurologist highly recommended as the expert/specialist on Chiari.  "David Frim, MD, PhD, chief of pediatric neurosurgery and an expert in congenital anomalies of the nervous system," which means Chiari (via).  And we have come to understand that getting an expert at pediatric Chiari on the case is a huge bonus.

So Frim comes in with Yassari and a surgical resident (can't remember that dude's name, but he looked really smart and didn't really say anything).  Frim took Molly through the whole dealio again: tests for balance, numbness, and other symptoms.  He asked questions about the extent of the problem, pain, and effect on life.   He looked at all the MRI film again and explained the details to us again.  These guys are thorough.  Frim told us all the symptoms are very consistent with Chiari, which was the thing that had us confused.  Confusion is totally gone.

Remember I said there were three basic reasons that surgery with Chiari is a must: drop attacks, a syrinx (spinal cyst), or swallowing issues.  Frim added a fourth, something about experiencing other neurological effects from Chiari.  When these larger problems aren't present then surgery may be offered but not required.  For example, the most common Chiari symptom is terrible headaches, migraines, etc.  Sometimes people will have headaches with no other major issues, so they simply manage the pain and press on.  I've even met a person who has/does this.

But Molly has some of the neurological effects Frim mentioned, including problems with finishing thoughts, remembering things, and mental overload when being spoken to.  Frim felt this basically would qualify her for the more necessary camp in surgery, even though they felt surgery was important for the balance and weakness issues as well.

Then Dr. Frim told us that he would be happy to do the surgery if we want him to.  Now get this.  We originally tried to get with Frim but were told we couldn't even have a surgical consultation until August 30th.  So Yamini took on Molly's case instead, and that is what got our foot in the door with Frim.  Our meeting with Frim took only two days after they decided it would be best to meet with him.  Good stuff.  Providence.

Truth is, this is as good as we've felt since the diagnosis.  We are really thankful for the large amount of time they have spent making sure they understand Molly's Chiari.  We are totally confident in Frim and his expertise.  We feel like the fog we were in has lifted completely.  He even said that he felt good that the surgery would relieve "all or some of her symptoms."  Bout time someone said that. :)  We know that there is still plenty of chance that some of the symptoms may remain, but Frim said that because Molly's Chiari is sizable, the odds of a good surgical result are very good.  Great news.

So what's next?

1. We have a call in to Frim's nurse to schedule surgery.  He said it shouldn't be too long to get Molly in.  Maybe a few weeks???  Recovery will be slow and painful, a full 24 hours in the ICU after the surgery and probably another 3-4 days in the hospital.  He showed where the scar will be on Molly, and it will be almost completely above her neck hairline (less visible).   We also discussed accommodation options for me while she is in the hospital and a handful of other things.  Maybe I'll talk about these at a later date.

2. We have canceled our Mayo trip.  We were all prepared to go, but we looked at each other after leaving the hospital and knew that Dr. Frim was the way to go.  We were downright giddy on the drive home.  Chiari is not so much about right diagnosis and making the right decision about fixing it.  At least not in the less complicated cases like Molly's.  It's about having the right people do the work when it's necessary.  Frim is the guy who writes the articles in the journals on this stuff.  Plus, we have had three different neurosurgeons do complete exams on Molly with complete agreement on what needs to be done (and they have consulted with others at the University of Chicago as well as outside, all in agreement).  We are so thankful to know (finally) exactly what the deal is, what needs to be done, and have a plan to take care of business. 

We'll keep you up to date when we know a surgical date or if anything changes.  We are thankful for all of your prayers. 

Family Health Update

Ugh.  Important news...

1. Molly's surgery has been postponed.  When? Dunno.  They wanted to cancel until we talked with the main neurosurgeon at the University of Chicago, Dr. Frim.

2. We are meeting with Dr. Frim tomorrow (Thursday).  We just found out Tuesday, the same day (I think) we had the surgery cancelled.  Why did they cancel the surgery with Yamini when the Frim meeting would happen so soon?  No honking idea.  Are they planning on Frim doing the surgery?  Are they unsure of something they haven't explained to us yet?  Are they just trying to make us MORE frustrated?  Dunno.  But our appointment is at 3pm tomorrow and we are about to find out.

3. Dr. Frim's nurse told us he is one of the slowest doctors, so that we may not leave our 3pm appointment until like 8pm.  Say what?  Yep.  So that means we leave at noon tomorrow and will arrive home maybe past 10pm or so.  Fortunately one of our babysitters isn't working tomorrow and can help all day.  Nice.

4. We are still going to Mayo Clinic on the 2nd of July.  We will take the kids to my family in Pontiac, IL on Saturday, come back to Woodstock so I can preach on Sunday, and then head up to Mayo.  We will be there, according to their information, for 2-4 days.  So if it lasts more than 2 days we will be stuck there over the 4th of July and have to wait until the 5th for more tests, meetings, or whatever they require. 

5. Just when you thought our family has had enough, the hits just keep on coming.  Elijah busted his head open today.  Just when I sat down to start doing a whole pile of work, I got a call and had to rush home.  It seems the dresser in our room jumped in front of him when he was being chased around our bed by his brothers.  So the next three hours were spent at the Emergency Room looking for some staples to get that scalp back together.  Seven staples later he was just fine.  And let me just say that I didn't see one tear from my six year old, even as I held him tight and the doctor treated him like a paper product.  After a good initial cry when it first happened, he was pretty tough and even found time to root on the Cubbies.

Surgery Scheduled

We are planning on going for a 2nd opinion at Mayo Clinic on July 2nd, but we also have surgery scheduled at the University of Chicago at the first possible opportunity: July 13th, a Friday.  Yes, Friday the 13th.  Awesome.  Enjoy this (for mature audiences only)...

The Chiari Call

Dr. Yamini called today, and yeah, that's him on the right.  Really like him so far. 

He has agreed to do the surgery.  He consulted with a handful of other neurosurgeons and Molly's neurologist and pretty much everyone agreed that surgery is at least recommended.  Problem is that they are only giving Molly a 50/50 chance that the surgery will help her.  Actually, Yamini thinks the odds are better than that.  But the general consensus is that they aren't extremely confident in good results, meaning that there is a chance Molly could have surgery and still be suffering some, most, or all of her symptoms.

Yamini said that Chiari surgery is only absolutely necessary when the symptoms include 1. problems swallowing, 2. drop attacks (sudden spontaneous falls followed by quick recovery), or 3. syrinx (cyst on spinal column).  In these cases an operation is crucial and urgent.  Molly doesn't have these.  Now that's a good thing because these things are bad, but it makes surgery seem more optional. 

Yamini's greatest concern, and ours as well, is Molly's struggles with balance and walking.  He feels these can be serious enough to warrant surgery, which is why they have agreed to do it.

But the odds of a favorable outcome feel too low, and concern us.  So we are considering a 2nd opinion from Mayo.  We still have an appointment on July 2nd and may keep it.  We can even keep it and have the surgery at the University of Chicago with Dr. Yamini if their opinion matches the other doctors since Dr. Yamini would probably not do the surgery until at least July 6th, and maybe even the 13th. 

So now we are praying and trying to decide what to do.  I think we are leaning toward Mayo.  When your wife is about to have her brains opened up, you just want to be as sure as possible that you are taking necessary risks based on the best opinions.

Geez, this is tough.  Thanks for your continued prayers for Molly.

On a more positive note, you may have noticed the "brain donation" button on the top right of the blog.  Please pray about donating your brain, or the brain of a loved one. 

We figured since Molly's brain is just to big that we might get a smaller one donated to us.  If you have the ability to donate a brain, please do so asap. 

When you click the above link you will find a map of all the drop boxes around the country for brain donations, such as this one (though the actual drop boxes may vary in color).

Thanks for considering this.

Consultation & Confusion

I wish I could say all went well today and the next step is clear.  It wasn't all roses and the way forward isn't clear yet. 

The neurosurgeon, Dr. Yamini, seemed like a great guy.  Lacking the quirkiness of so many doctors, he was friendly, laughed at my jokes, seemed genuinely concerned, and responded with wisdom to the situation at hand (as best we can tell).

I'll try to stay within the nutshell.  He agreed she has Chiari I Malformation (knew he would), but didn't feel we should schedule surgery just yet.  Not because Molly might get better, but because of at least a couple of things...

1. There is no evidence on the MRI films of any major effects from the Chiari, though the Chiari itself is evident.  Often Chiari sufferers have developed one or more cysts in the spinal cord called a "syrinx."  At the least there are often spots on the chord that show problems occurring in and around the spinal column.  Molly's spinal chord is "pristine" according to Dr. Yamini, meaning it looks just fine and has absolutely no noticeable effects from the cerebellum pressing on the spinal column.

Because of the lack of noticeable trauma on her spine, Dr. Yamini is curious about whether or not the symptoms are coming from the Chiari Malformation or something else.

2. Molly's symptoms don't seem to match what Dr. Yamini has seen many Chiari patients.  Often people experiencing dramatic Chiari symptoms have had some lesser symptoms long before.  Things like chronic, bad headaches.  Molly's symptoms just started a month ago, and she went from very healthy and feeling good to awful symptoms. 

Dr. Yamini was also concerned for Molly's unbelievable balance problems, and wasn't exactly sure her symptoms would be this dramatic when the Chiari hasn't produced noticeable effects on the spine.

Because there is no trauma and the symptoms are not quite aligning like typical Chiari, Dr. Yamini is questioning whether there might be a different problem causing Molly's symptoms.  He said he assumes that Chiari is still the heinous culprit (see this at minute 3:40), but he isn't confident enough to perform such a dangerous surgery without ruling out some other possibilities.

Next Steps

Dr. Yamini will be consulting with his two colleagues at the University of Chicago, Dr. Curry and Dr. Frim.  All have performed a number of Chiari decompression surgeries; Dr. Frim has performed the most.  He will also talk with our neurologist. We are waiting for a phone call sometime this week (hopefully early this week).

Our Thoughts

We are exhausted and frustrated.  It took nearly 3 hours to get to the hospital this morning (rush hour + a 4 car pile-up = Steve yelling at cars). 

We feel both better and worse about things.  We feel better because we like the neurosurgeon and are thankful for his advice, cautiousness and candor.  We also feel better because we had assumed this surgery was a near-emergency situation.  He says it isn't, and we believe him.  We are thankful that we have a chance to make sure we don't do this surgery on too little info and regret the pain, suffering, and risks later. 

We feel worse because we felt this was a cut-and-dry situation.  "It's Chiari, it's not treatable by pain meds, so we plan to operate and make things better."  Now we feel a like we are being re-enveloped in mystery.  "Is this really the Chiari?  Or could it be something else?  And if/when she has surgery, will it really be the solution or will major symptoms remain?"

We hate the "worse" part of this.  It was a long, difficult drive home as we thought through the situation and wondered how long Molly would keep suffering like this.  I think Molly is more depressed about things now.  But in the end I think we are ready for whatever comes and look forward to doing whatever is necessary. 

Oh, and the best part of the day was eating at P.F. Changs on the way home.  Orange Peel Shrimp, baby!

Consultation Coming Tomorrow

Tomorrow (Monday the 18th) is Molly's consultation with Dr. Yamini at the University of Chicago.  It's at 11am. A little nervous, but mostly thankful it's finally here.  I'm probably most anxious about driving into the city and making it on time.

Molly has had a good week, considering.  She had about 2 good days where she regained her balance and lost some of her weakness problems.  She was having more headaches and other symptoms instead, but the most serious symptoms were not so bad and for that I'm very thankful.  Then it turned bad again, at least at times.  Laying down for another MRI really was painful on Wednesday and made the rest of the day miserable.  Sitting for a 2 hour movie was fine on Friday night, but when she got up it was a nightmare.  She could barely walk out of the building, and only did with a lot of help.

By the way, my back issues seem much better the last 4 days.  Still some stuff going on, but nothing big at all.  Working on posture while on my laptop and sleeping in the right positions has helped.

Please pray that Dr. Yamini will take Molly on the right course of treatment, which we assume will be surgery.  And pray that we will continue to trust that God is teaching us to trust Him more during difficult times.

Video of Chiari Surgery

If you are interested, here's video of a Chiari 1 Malformation surgery.  I've seen the whole thing, Molly has seen much of it, and all of our kids have watched pieces (they especially like the part where they can see the brain.  Pretty cool really.). 

It's video of a live surgery, so it's not always easy to watch.  Probably not best to watch before a lasagna dinner.

Molly's Email Address

I've said a lot about Molly, what she is going through, what she is going to go through, and so on.  I thought it would be good to let you know her direct email address.  Anyone is free to contact her and send any encouragement her way.  She checks her email often, more than once a day. 

By the way, if you email her to tell her how absolutely stunning and hot she is (that's my job), I will hunt you down and rip your face off (that's my job too). 

mollymccoy [at] gmail [dot] com

Weekend Update About The Chiari Challenged

Quick update on Molly, upcoming surgery, and the rest.

Molly's health:  Please continue to pray for her.  She is now experiencing nausea at times and is having some issues with her vision.  I believe neither are too surprising with Chiari, but as the symptoms mount so does her pain, discomfort, frustrations, and tears.  She is really struggling emotionally with all this.  Just in case, Molly will talk to the Neurologist on Monday to keep him up to date on her new symptoms.  That way if he notices anything odd we can deal with it right away.

Kid Story: Jack, our 8 year old autistic son, is one of those kids who just never seems to notice the problems of others.  He lives in his little world and is rare to have compassion.  Tonight, completely on his own initiative, Jack was helping Molly walk around, hand around her waist, looking at her face to see if she was in pain, asking if she was doing ok, etc.  It really touched Molly.  What a great kid, and what a wonderful experience for us during a difficult time.

Spirituality: Now is one of those times that John Piper's "Don't Waste Your Cancer" takes on a special meaning.  I mean, I thought it was "special" enough to have my Mom die of cancer in April and learn my lessons there.  But God is continuing to use pain and difficulty and fear to teach us about His goodness and mercy, so we read on and continue to trust Him.  I'm thinking of writing a "Don't Waste Your Chiari" article, but who knows???

Place?:  As Molly's surgical consultation with Dr. Yamini at the University of Chicago approaches on the 18th, we have also heard from Mayo Clinic in MN.  They have her scheduled to be up there on July 2nd for a consultation.  They would schedule a surgery several days after that.  That means we would have to make one trip for the consultation, return home, and go back up at a later date.  With that news, we are most certainly planning on going with the University of Chicago unless the consultation there doesn't go well or we feel uncomfortable with them.  Then we would go to Mayo as a backup.

Stocking Up: We went to Sam's Club yesterday to stock up on paper plates and "even-Steve-can-make-that" food for post-surgery time at home.  I've heard of the nesting idea with child birth, but Molly seems to be experiencing it with surgery. 

Steve: You aren't going to believe this, but about a week before Molly started to experience symptoms from Chiari 1 Malformation I was at the doctor with back pain.  The doctor thought it was just muscle issues.  It almost completely went away and then returned, and it's worse.  I now have significant pain.  On the day we went to Sam's I started to experience numbness in my left arm.  I made it to the doctor again yesterday and he thinks I have a pinched nerve.  Unbelievable.  When it rains it pours.   Neither of us have a history of any major medical issues, and now we are getting it all at once.  I have really battled the idea of telling anyone about my stuff because I can deal with the pain in order to help my wife.  But I thought it was stupid of me to be quiet about it when some could be praying for me. 

Next: Molly has to have another MRI next week.  She is dreading it, as expected.  If anything new pops up, I will let you all know.  Thanks again for praying.

Coming Neurosurgery Meeting

After talking with Helen in the Neurosurgery Department at the University of Chicago, we have set an appointment with Dr. Yemini on June 18th, the soonest possible date.   This is the initial consultation about Chiari Malformation 1 surgery to detail what will happen, answer questions, make sure Molly isn't faking it for sympathy, etc. 

If all goes well we then set a surgery date, which they said should be very soon after the 18th.  So it's very likely that in late June Molly will have brain surgery.  Yikes, that sounds serious. 

U of C isn't our only option.  We are still awaiting word from Mayo Clinic (maybe on Friday) about whether or not they can get us in soon.  If we hear good stuff from Mayo we may take that option.  We'll let you know when we know which way we are going for sure.

Nice facts: The University of Chicago Hospitals are #16 on the U.S. News & WR list of top neurology and neurosurgery hospitals.  No surprise, Mayo Clinic is #1.  Both good options.

Five ways to exploit your Chiari Malformation (we need to laugh or we are going to go crazy)...

5. "Twenty miles over the speed limit, Officer? Sorry, my Chiari makes it hard to tell how hard I'm pushing the pedal." (numbness of limbs)
4. "Honey, I just can't do/lift/work on/bathe/clothe/wash/clean/cook/find/ vacuum/dust ___________.  Can you do it for me?" (muscle weakness)
3. "I'm so smart my head can't contain all my brains!" (see MRI film, or diagrams)
2. "Can we just go to sleep tonight honey?  My Chiari is acting up again." (headache)
1. "I haven't been drinking officer, it's just my Chiari." (dizziness, problems with balance and coordination)

Visit to the Neurologist

Thanks for all of your prayers.  We need them. 

We got back from the neurologist a little bit ago.  It's confirmed that Molly has Chiari I Malformation.  Surgery is not only a must, but the neurologist also encouraged a sense of urgency.  If it isn't taken care of soon there can well be more permanent damage done to her body. 

Basically the lower back of her brain, the cerebellum, is pressing into her spinal column and putting pressure on her brain stem.  Note in the Molly's MRI film on the right (click it for a larger version) the dashed line "T."  That is the bottom of the cerebellum part of the brain where it shouldn't be.  It's causing her both physical problems (limbs going numb, significant back and neck pain, balance issues, dizziness, etc) as well as some problems with her thinking.  She is struggling to track well in some of her conversations and has difficulty coming up with the right words to say.

First thing tomorrow morning we are going to speak with a neurosurgeon at the University of Chicago.  He is gone for the day or we would contact him today.  U of C is well recognized for this kind of surgery and comes highly recommended by Molly's neurologist.  We considered the Mayo Clinic, but with four kids it's difficult to go farther away (they likely will stay here in Woodstock with friends). 

As we understand it, this surgery should really help to straighten things out.  Many recover from most of their pain and difficulties.  The hospital stay should be 3-4 days. 

You would be right to guess we are concerned and a bit stressed over all this.  Molly is doing pretty well knowing surgery is coming, but I have to admit I'm starting to freak out a little bit.  We know God is in control and that we can trust Him with all our circumstances.  And I do feel all will turn out just fine in the end.  But I'm really starting to feel the weight of what's coming.  The next few months are going to be very stressful.

I love my wife so much.  As difficult as this will be for her, and for us, in many ways I'm looking forward to caring for her.  Please pray that we will get this surgery in the works asap.  And thanks again for all your prayers.  I will post any updates when I am able.

Please Pray for My Wife

My beautiful wife, Molly, has had some severe back/neck issues for a few weeks now.  It has been causing her tremendous pain, significant muscle weakness, numbness in her arms and legs, dizziness and loss of balance, and more.  We assumed it was a pulled muscle or a pinched nerve, but a visit to the doctor said otherwise.  He said the symptoms didn't match something all that simple.  He gave her a few days to see if it started to improve.  It didn't. 

So our doctor sent Molly to get a battery of MRI's for her back, neck, & head.  He called on Saturday to deliver some bad news.  Our doctor told Molly she has Chiari (pronounced kee-AR-ee) Malformation, which is a "developmental anomaly at the base of the brain which results in the downward displacement of some of the brain's structures into the spinal canal" (via).  "The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord)" (via).  Molly has had this neurological issue her whole life, but as often happens with this problem, the symptoms don't develop until adulthood (via).

Though we don't see the neurologist and get his thoughts and official diagnosis until tomorrow (things may be a little different in the eyes of a specialist), I thought it would be helpful to explain to my readers what Chiari Malformation is and the possible treatment my wife faces. 

If the diagnosis is correct there are two courses of possible action as we understand it.  1. Treat the symptoms, or 2. Surgery.  Merely treating the pain seems absurd at this point since her limbs go numb all through the day, she has come close to falling from balance issues, etc.  Pain treatment won't do anything for these problems.  So it would seem that surgery is the only option. 

"Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system" (via).  The key is "creating more space at the region of the foramen magnum to allow the spinal flow in this area to return toward normal" (via). To do this the neurosurgeon would make an incision into the back of Molly's head and upper neck, remove some of the very back of the skull and possibly C1 and maybe even C2 (picture at right), and create space among the membranes in that area (via).  Learn more details of the surgery here, and a helpful series of illustrations here.

We are going to the neurologist tomorrow at 1pm (central time) to hear his diagnosis and approach to treatment.

Though our doctor seems quite confident of the diagnosis and we trust him, we are being a little reserved until the neurologist gives us his opinion.  I've heard too many stories of misdiagnoses.  Stay tuned for more info tomorrow after the appointment.  And if you think of it would you please pray for Molly.