First Car Ride Post Acoustic Neuroma Surgery

It's 3:37 AM... and steroid induced insomnia is at its peak...so why not a little blog post from me?

Last Monday, a day earlier than expected, the nurse handed me a stack of discharge papers. I was nervous to go home. Assured I could stay another night by the nurse, my mom and Jerry had a different message for me---we aren't spending another night with you! ;) So Jerry went down with flowers and bags to summon the crazy Zale Lipshy valet while I waited on a wheelchair escort to the very bright outdoors.

Why was I nervous? I was really not excited about my first car ride after brain surgery. The hospital room had shades to draw and a stationary bed and chair---and food trays delivered 3 x daily! The car meant bright sun, bumps, turns and holding my vomit bucket closely.

Nonetheless, a cheery transport helped me to the wheeled chair and down we went. A nice lady, from our hometown actually, didn't even comment on my rigged sunglasses. Mom removed one bow as to not irritate the swollen incision behind my ear. I didn't care that they sat crooked on my face. They shielded me from the sun monster shining through the bank of lobby windows.

I spotted Jerry standing in the crowd of people trying to valet and others trying to retrieve cars parked no telling where.  We had experienced this same scene exactly a week before when trying to leave my pre-op appointment. 20 minutes.  20 minutes to have them bring the van. And then another 10---just to pull through the mess of cars. Cars abandoned by drivers trying to make it to their doctor on time.

Then Jerry motioned my transport to come quickly! He saw the van coming into the lot and didn't want it to get stuck in the crowded standstill pull through line. I was wheeled through countless cars, bumping many, as we made our way to the van. In a dizzying commotion I was loaded and Jerry reversed out of the chaos before I could tell him, "Wait, I don't even have my seat belt on!"

I longed for the hospital bed with all the buttons. It took a while, but with various combinations of pressing, they assured a comfortable position for at least a while. The van seat was not so. I clenched the vomit bucket, thankful to have taken Zofran just prior to leaving, and we made our way to my parent's home.

Mom, a nurse by profession, welcomed me gladly to my place of respite for the next week. When I sank into her recliner I was finally glad that I had decided to attempt the ride "home".

*   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *

How am I doing now?  In short, very well! We are completely amazed. So thankful the Lord chose to provide such a successful outcome via very gifted surgeons.

Dizzy? Not really. Unless I turn quickly, make a sudden change of direction or have too much sensory input coming my way. Like when today I had my father-in-law take me to the store to pick up some ointment for my suture site---too much to take in. People, moving carts, kids crossing my path, tall shelves loaded with products, etc. Completely wore me out.

Balance? Humbling. I feel pretty balanced until I try to do the physical therapy exercises.  Try putting one foot, heel to toe, right in front of the other one.  Then close your eyes and stand there for 30 seconds.  Easy? Well put the other foot in front and try again.  I can't make it for 5 seconds yet.

Hearing? Deaf in left ear...but it STILL rings.  This is just crazy to me. Tinnitus is like the ear's version of phantom limb. My doctor says this might subside. Good Lord, please.

Looks? I *think* the same. My face, neck and jaw are extremely tight. Irritated muscles and nerves they say. My smile seems symmetric and my eyebrows move normally. Praise HIM! I think the most noticeable thing is that my left eye seems to be a bit hyper...opening wider than normal.  It may relax though, and if not...I am not worried. Eye drops help it stay moist.

Pain? Nope. Sure, the incision sites are tender--both my scalp and abdomen don't feel just peachy, but better every day. The stitches came out today.  It is really remarkable how unimpressive the surgery site is. He barely shaved ANY hair at all.  Freaks me out to realize how far my skin must have been stretched open to remove the mastoid bone and gain access to the tumor. Yuck!

What's next? Tapering off steroids! I am almost done but my previous experience is that they will stay in my system a couple more weeks.  Trying to rest and not "over do it" is hard when hyped up on them. It is amazing how great I feel on 3-4 hours of sleep. But when the fatigue hits, it hits hard, and I crash quickly. Usually not before talking the heads off several people though! ;)

Follow up? I see the surgeons again in about 3 months.  At that time I will have another MRI and undergo more balance testing. Now we get to watch the meningioma.  Fun, fun!

How to pray? I covet your prayers for continued healing and rest...especially now that I am back home with Lily and Jade.  My rock star in-laws are taking charge with their homework, projects (of course a Charlotte's Web diorama would be due this week!), and shuttling them to and from school and all of their activities. Please also pray specifically against spinal fluid leak and meningitis.  Apparently I am not completely out of the woods with those risks yet---but am obviously hopeful and not worried. I think I will be able to drive again within the next 3-4 weeks...we are asking for wisdom to know when my vestibular system is ready to handle it!

Thank you for following along in this journey with us...we appreciate your friendship and prayers!  I plan to blog in the coming weeks about how the tumor was discovered, our treatment options/decision making, and other parts of the recovery that I want to record---it will bore most, but will be good for me to process.  Unsubscribe if you want...I won't know! ;)

Blessings to you!

"Home" + Kerry Q&A

Kerry is out of the hospital!  Everybody and their brother came by this morning to clear her for departure and by 11:00am we were on our way to Kerry's parents where she will be staying for the rest of this week.  Yes, PT finally showed up again today.  There were some tears associated the PT test but in the end Kerry passed and was cleared to go home. 

On our way home we made an account of the Lord's blessings over the last 5 days.  Kerry will probably list all of those in a later blog.  I will touch on many of those blessings below and try to answer some questions I've received about post-surgery Kerry.  Brain surgery can mean so many different things depending upon where they operate.  Maybe this "Kerry Q&A" will help relieve any unnecessary concerns.  

Can she talk?
Um, yes!  As her mother said, she was already ordering everyone around as soon as they woke her up in ICU.  They did not work on any part of the brain related to speech.  Her speech is alive and well!

Can she walk?
Slow and steady.  She was on her feet day one post surgery and she gets better everyday.  We are so thankful that her right vestibular system is adjusting nicely.  The more she walks and gets around the more her brain will adjust and compensate for the loss of her left vestibular system.  There is a lot more to getting around than just standing up straight and walking in a straight line though.

Was her facial nerve damaged?
There is zero sign of any facial nerve damage.  This is a miracle.

What's different?
We are thankful to God that the only permanent side effect of this surgery is the loss of hearing in her left ear and a scar that will be covered up by her hair in a matter of weeks.  As good as she IS doing, she is nowhere near being ready for normal life. This will truly be a 6 week recovery.  She's really tired.  Her body has to heal and adjust.  Things like reading, TV, Facebook, grocery shopping, large groups, driving, etc. are a ways away.  New movements/experiences/stimuli must come slowly to avoid extreme vertigo as the right vestibular system takes over full-time.

Prayer requests:
-Patience as the boredom of a long and slow recovery sets in.
-Courage each day to do scary things.
-We still don't want a spinal fluid leak.
-Sweet times with the Lord.
-Healing of the surgery sites.


Jerry

Sunday Update w/ a Picture

Few changes on Sunday.  She walked quite a bit further.  It helps that her vertigo is mostly under control in the hospital setting.  She continues to eat well.  No signs of a spinal fluid leak.  And her head bandage came off.  The wound looks "good" (as long as you're holding on to something).  All good progress.

We hope to go home today (Monday) but that's a long process.  The only hold up might be that PT (physical therapy) has not been to see Kerry since Friday.  The nurses are a little upset about that.  We're working on our "homework" diligently everyday but apparently we have an old assignment sheet.  Hopefully PT will come early today and feel that Kerry is stable enough to go home.  

Here's a pretty typical picture of the patient over the last several days.  She still prefers to have her eyes closed in order to keep the vertigo at bay, especially when there is a lot of light, but everyday her eyes stay open more and more throughout the day.

Today's prayer requests:
-Pray that PT would see her early on and that all would go well.
-Pray that all of the doctors would come early to assess and make a wise decision about releasing her.
-Pray that we wouldn't rush Kerry home if she is not ready to go home.  Nights have brought on some headaches and nausea.
-Pray against spinal fluid leaks.
-Pray against extreme vertigo outside the hospital setting.  Extreme vertigo is under control but that's because Kerry keeps a nice slow pace and limits herself well.  The real world could be a shock.
-Pray especially for the drive to her parent's house, where she is staying for a few days after leaving the hospital.  No nausea.  No vertigo.

Thank you for your prayers on this potentially big transitional day.


Jerry

"...very, very lucky..."

Referring to the success of the surgery, the neurosurgeon said:  "You're just one of those very, very lucky people.  Perhaps the prayers...helped."

There is no "perhaps" to it.  It's abundantly evident to us that the many prayers offered before/during the surgery and even now have been heard.  It's inexplicable any other way.  We sincerely believe prayer is working and give glory to God who hears and acts on the prayers of His people.

Did God shrink the tumor so that it would be completely removed?  Kerry hinted at that possibility today.  It was .5 centimeters smaller than the MRI showed.  Did that sensation and pain in the days leading up to the surgery, that the doctors couldn't explain, have something to do with it?  We don't know for sure but do know that God does that sort of thing all the time.  Either way, we praise God that the entire tumor is gone!

Other praises:

-Kerry's mobility and balance continues to progress.  She's now able to walk slowly up and down the hall.

-Her hearing is even better.  Huh?  That's what she says.  With the ringing not as pronounced in her now deaf left ear, she can hear better in her right ear.

-She's eating well.  Too bad the chicken was "nasty" tonight.

-Everything is pointing to her being allowed to come home a day early.

We know without a shadow of a doubt that all of these things have happened by the hand of our great God because of your prayers.  Thank Him when you talk to Him next.

Please continue to pray!:

-That there will be no spinal fluid leak

-For relief from her first headache tonight

-For good rest as they put her on steroids (many of you know how those affect her) and she slowly comes off pain meds

We're still asking for no visitors.  Rest is a precious a commodity.

Jerry

Day One Post Surgery: Update

Sorry for not giving an update late yesterday.  It was a tough and busy day for Kerry.  We were both exhausted by the end of the day. They started pushing her pretty hard early on.  Getting her up.  Making her do neurological tests.  So far she's getting "gold stars" in every category according to her neurosurgeon.  The CT scan looked great.  Praise the Lord! 

Progress came in baby steps.  The morning was really tough.  She was a bit discouraged and I was a bit humbled.  The surgery was so successful, I think I forgot what they did to her on that operating table.  The morning's activities forced me to do a bit of a mental recalibration.  After my expectations were adjusted, I was able to appreciate that what we perceived were baby steps were really giant steps.

She moved to a regular room but is not up for visitors yet.  The medical attention is so continuous, she needs every minute she can to sleep.

Please keep praying:
-pray against depression - that baby steps would be encouraging to Kerry
-pray that she will eat well
-pray that walking and balance would continue to improve
-pray that a wicked crick in her neck below the surgery site would loosen up
-pray for spinal fluid leaks to stay away
-pray for Lily and Jade as they start to really miss mom



Jerry

Day One Post Surgery

Kerry had a good night last night.  Not much sleep though, thanks to the constant medical attention.  The 1:30am CT scan was uneventful - yet another answer to prayer. Some lip balm to the lips and ankle massages brought the most relief last night (well, other than the meds). Poor thing could probably down a gallon of ice cold water right now but all she gets is the occasional swab of water in the mouth.

She is still in ICU this morning but doing really well.  We anticipate she will be able to go to a normal room later today.  It's slow going at this point though, so we'll see.

I'll let everyone know when/if she will be up for visitors.  Right now opening her eyes causes nausea because of the severe vertigo so even when she's awake and talking her eyes stay closed.  Again - this is typical. PT will try to get her up at some point today to really assess her balance.

Things are slow going right now so updates will be as well.

The girl's are doing great.  They were excited to see their dad before school this morning.

Prayer requests:
-relief from vertigo/nausea
-balance assessment later today
-pain management in the neck
-no spinal fluid leak
-continued progress
-the missions conference at PCPC next weekend (that's a selfish one)

Thank you for your continued prayers and notes of encouragement.


Jerry

CT scan in the early AM

Kerry asked me to send out a prayer request for her 1:30am CT scan to check on bleeding.  It's routine to make sure all is well, but will require unwelcome movement.  Please pray that it is easy and provides more good news.

Update:  The CT scan was uneventful.  Another answered prayer.

Jerry

A Happy Valentine's Day - Surgery a Success

Valentine's Day, February 14, 2013 is a happy day indeed.  Smiles are hard to hold back.  But why would we want to hold them back?  Kerry is resting well in ICU.  She looks "great".  Great is in quotes, of course, but considering the circumstances she looks really, really good!  I'm not sure the surgery could have gone better.

We've been able to see her for a while now.  After I saw her for the first time I called Lily and Jade to let them know I saw their momma.  They were thrilled, expressing praise to God for answering their prayers.

Lily: "Does she have the tube in her throat?"
Me: "Nope"
Lily: (screams) "Yay!  I've prayed for that all night!"

Jade: "Now we KNOW God hears us!"

There is no doubt that the Lord heard the prayers of His saints.  So many people have been praying and those prayers were answered today.

She will be in ICU tonight and likely moved to the main floor tomorrow at some point.  She definitely doesn't feel good and probably wouldn't agree that she looks great but I think she's the hottest Valentine's Day brain surgery patient this side of the Mississippi.

Specific prayer requests:
-Pray for the facial nerve to stay strong and avoid swelling.  No signs of facial issues at this point!  This is not typical.
-Pray that pain would be managed well.
-Pray that nausea would subside (typical when your balance nerve is cut).
-Pray that vertigo would subside (typical when your balance nerve is cut).  Opening her eyes is not very fun right now.
-Pray for full and quick healing.

Happy Valentine's Day Kerry!  You may not be so happy at this moment, but we are thrilled!


Jerry (for Kerry, for now)

Praises going up already

I'm a little speechless.  The doctor could tell we were ecstatic at the news he just gave us and told us not to celebrate just yet.  "Celebrate" may not be the right word.  Thankful is more like it.

She is "put back together".  They are sewing her up now.  Already!!  We are praising God! The tumor was totally removed.  The facial nerve is intact.  There is some possibility of temporary facial weakness but not likely anything permanent.  This is an excellent report!  Everything is ahead of schedule, which means less anesthesia. We are thankful for SO much.

Please continue to pray.  She is still on the table.  They will probably wake her up in 45 minutes.  PLEASE pray for that process!  Pray that she would come out of anesthesia calm and alert.

I will update about ways to pray going forward after I see her in a bit.



Jerry (for Kerry, for now)

Thankful for my "Airhead"

Phase one is over.  In fact, she's well in the midst of phase two (tumor removal).  This is the tricky part.  Please continue to pray for her protection and for no complications.  Pray hard for the facial nerve to be undamaged!

We met with the doctor after phase one.  All reports are good.  No complications and no surprises.  In fact, phase one (opening up) was ahead of schedule.  The doctor joked that she is an "airhead".  I don't entirely get the joke but apparently there are air pockets in the skull and apparently Kerry has a lot of air in her air pockets, which made phase one easier than expected.  Praise the Lord for my airhead!

We just got another update from the head nurse.  Praise God.  She is doing well in the middle of phase two.

Please do continue to pray through this critical time.

Jerry

The thick of it

She's in the thick of it now.  The first incision happen about 10am.  If all goes as expected the "opening up" part of the surgery will take 3-4 hours, tumor removal another 2-4 hours and then they close her back up with a little "padding" from her stomach and artificial skull substance.

Waiting.  Trusting.  Leaning.

These sound like passive words but they aren't.  We have a loving Father who is not afraid for us to wrestle honestly with Him in our struggles.  We don't just cope.  We pursue Him - all the while He is pursuing us.

This sermon on Sunday was meat for Kerry's soul: Waiting on the Lord.  Our Elders anointed her with oil and prayed for her this Sunday.  She has been at peace sense.

Continue to pray for the Lord's hand to be on her and the doctors.

Psalm 40: 1-5:

I waited patiently for the LORD;
he inclined to me and heard my cry.
He drew me up from the pit of destruction,
out of the miry bog,
and set my feet upon a rock,
making my steps secure.
He put a new song in my mouth,
a song of praise to our God.
Many will see and fear,
and put their trust in the LORD.
Blessed is the man who makes
the LORD his trust,
who does not turn to the proud,
to those who go astray after a lie!
You have multiplied, O LORD my God,
your wondrous deeds and your thoughts toward us;
none can compare with you!
I will proclaim and tell of them,
yet they are more than can be told.



Jerry

In the OR

Kerry has been back in the OR since about 8:55.  They were a little slow in giving the "happy juice" for my taste but all of us were more than impressed with her strength.  Let me rephrase that.  She was strong but not in her own strength.  We were thankful that the Lord was holding her.  She was ready. She knows who holds her. She has that peace that is incomprehensible.

The first thing they did was write a big YES below her left ear to make sure they operate on the right (or as we joked, the correct side, lest we confuse them) side.

We expect updates every hour and to meet with the doctors twice during the surgery.  We know that many are praying.  Our prayer requests are the same:
-protection in surgery
-no blood clots/other complications
-skill for doctors and staff
-peace for lily and jade this day

The physical presence of Christ in and through His people is one way he demonstrates his love and care for us.  Thank you for praying and for remembering Kerry today.  


Jerry (for Kerry, for now)

Driving to get PJs

This is my first post (Jerry).  And kind of a test post too.  I had to prove my technical skills to Kerry.  : )

Kerry's surgery was delayed to 9am tomorrow.  The preferred anesthesiologist had another 7am case.  There was a tinge of concern when at first Kerry thought the main surgeons took an earlier case (they did not).  When you're having brain surgery you pretty much want to be the center of attention for those 8-10 hours.  I think that makes sense.

We are supposed to be there at 7am instead of 5am.  No arguments here.

I plan to update after the start of the surgery and a couple of times tomorrow as we get updates.  If you subscribed to the blog, know that the posts are not forwarded to e-mail for a several hours so check the blog for current updates.

And, yes, we're just now headed out to get hospital PJs.


Thank you for praying for my bride,

Jerry (for Kerry, for now)

Uh, oh! Mountain Cedar taking its toll...

************Revision below *************
The Lord knows all. He knew this weekend I would be calling my surgeon to see if it was okay to load up on Sudafed and Allegra before surgery.  It seems the record levels of Mountain Cedar in the air have left me with scratchy throat, congestion, sneezing and coughing.

He also knew that I would be going in for my all of my pre-op testing today...seeing multiple docs who will be able to decide if with these symptoms it might be wise to postpone surgery.  You see, my pre-op had been scheduled for last Wednesday. However, after many phone calls and requests, I rescheduled it for today so I could drive Lily's field trip last week instead. It meant so much to her and I was glad I had gone through the trouble of rescheduling.  I felt totally healthy last Wednesday...so I am thankful that it is today that I am going in and they can make some decisions about how I am feeling.

Would you pray along with us? It would be really hard on me for surgery to be postponed as I know it would take weeks for them to reschedule. I am ready. But I also know that God is in control and He may have some other purpose to accomplish.  Please pray that the Lord's will would be done.

Speaking of prayer...the elders of our church anointed me with oil and prayed over me yesterday.  It was a beautiful, peace bringing, and moving time for Jerry and myself.  Our senior pastor also mentioned to Jerry that people will be praying in our church's chapel throughout the day of my surgery.  Wow.  So humbled and thankful.

If you want to commit to praying for 15 minutes during the operation on Valentine's Day, click below to sign up and an e-mail reminder will come your way!

Off to pre-op testing...fun, fun!

************ Revised at 5:00 PM ********************
Pre-op complete.  The docs were concerned, but not overly, about my symptoms.  If fever develops surgery won't happen.  If I wake up feeling crummy Thursday I still go in.  Basically the anesthesiologist will listen to my lungs closely and will make the final call.

I did learn that I might be intubated overnight in ICU which totally freaks me out.  :( Major surgery on my head and I am more worried about intubation and catheters.  Go figure. 

To leave you on a funny note, I have to tell you about my labs.  They drew 5 vials of blood and then asked if I could give a urine specimen.  Of course I had just used the restroom.  So they poured me cup after cup of water and about an hour later sent me in with a specimen cup.  I totally went and flushed and then caught eye of the unopened cup sitting there.  Seriously.  Where is my head?

Thankful to be at peace...

Well, surgery keeps getting closer! First the calendar turned to February, and now we are actually less than a week out. Some fun things we were looking forward to (a night away and Jerry being announced in his new role) have come and gone and now the next big thing is actually the surgery.

I have been doing remarkably well, even emotionally.  I finally do have peace...which if you know me and what an awful patient I am...it is definitely an inexplicable peace from the Lord. I feel completely carried by the prayers of many.

I did have a moment of tears on Monday.  I am not sure why, but it really hit me hard when I was called with the exact time of my surgery.  I have known the date of 2/14 for weeks, and of course assumed early morning because of its length. However, when she said your surgery is scheduled for 7am and you need to report at 5am, it all of a sudden became a bit too real!

We continue to praise the Lord for the Body of Christ which has come around us in unimaginable ways. It has truly been an experience like no other and we are so grateful.

One hard thing I have been facing is that it has become difficult for me to pray for myself regarding the surgery. It simply causes anxiety to verbalize the requests. I am thankful to be able to rest in the promises of Romans 8:26-28:

 Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.

A sweet friend who was also recently diagnosed with an acoustic neuroma (what are the odds!?!), asked if I had thought of setting up a prayer signup for people to pray in increments during the surgery.  I had not thought of that, but alas, with Danielle's great idea and the beauty of sign up genius...here you go!

 

I would be so honored by your prayers during the operation...that the Lord would keep me and grant me protection. Please continue to pray that I would remain healthy until then as well...I feel a cold coming on. :(

Also, I plan to go back and record some of my experiences with this journey over the weekend...it is therapeutic! Plus there is a whole Acoustic Neuroma Association that points people to blogs like this as a way to navigate the process. So if you are subscribed you may see some random posts back dated to November and December.