Back Where We Started

We are back where we started, on the SICU floor at HCMC in downtown Minneapolis.  Joel came here by ambulance yesterday afternoon and had a surgical procedure done by the ENT team at about 11 pm.  Dr. H went through his mouth to access the abscess (sounds like a song, "OK, everybody, access the abscess with me!") , remove all infection, irrigate the cavity, and insert a drain tube through Joel's nose to hold the incision open until the air pocket underneath can heal from the bottom up.

Saturday, when Joel felt even worse than Friday, my heart sank.  It sank even lower when he spiked a fever that evening, and when the home health nurse recommended an ER trip.  At midnight as I lay down, I decided to take Pete's advice and put something edifying in my mind.  "EM Bounds on Prayer" caught my eye and I opened to the first chapter - "Prayer and Faith."    Tears filled my eyes as I read that we should not fret if the Lord delays His answer, because He has a greater work that needs to happen first.  "Jacob had to be changed before Esau could be."

On Sunday morning before Pete took him in, I read the passage to them and we all agreed it was what we needed to hear.  The sermon by visiting pastor B also spoke to my heart:  "If your situation has changed dramatically for the worse, like the exiles in Babylon - get on with your lives."

I cried when making the announcement in church, and got plenty of hugs afterwards.   At 3 Pete informed me that the ambulance left Willmar to head to HCMC.   Today we have heard from at least four different teams of doctors, and I am glad to be here where I'm confident they won't let Joel go until this problem is solved.  Lord, may we patiently wait for Your greater work to be completed.

One Day at a Time, part 3

Joel didn't come home - again.  On Monday, his 21st birthday, the doctors voiced their concern over two low-grade fever and an elevated white blood cell count and ordered two tests, one for an intestinal tract infection and a swallow study.  Since the swallow study was delayed until Tuesday afternoon, his discharge didn't happen.  The first test was negative - good news! - but the only good news about the swallow study was that it wasn't in vain.  It involves swallowing barium, which Joel regurgitates every time.  We were all sure that it would show nothing, but unfortunately, it did show some kind of connection between the esophagus and this abscess area.  That began a flurry of activity, leading to a CT-scan-guided mini-operation to place a drain tube through Joel's neck into the abscess, in the hope of avoiding further surgery.  We stayed another night to support him through the ordeal, which involved him holding his head back for the hour of the procedure, and the MRI Wednesday morning to look for bone infection.  Thankfully there was no sign of that, though they will continue to treat Joel with strong antibiotics just in case.

On Tuesday night after the procedure, Pete asked Joel, "Do you feel anxious?"

"Yes," he replied.

"What are you anxious about?"  Pete probed.  Joel hesitated, unable to articulate exactly what concerned him.  So I rushed in, "He's worried about having another surgery.  It hurt SO bad, and took SO long to recover and then he was SO weakened and set back by it, and...he can't BEAR another surgery!" I was bawling and Joel was crying and Pete cried too.

My head and neck and shoulders were sore, my stomach was tense, and I had a very slight headache (I never have headaches).   This continued all day Wednesday; Pete gave me a massage and I took a bath that evening, which helped.  I was fretting and worrying about the possibility of surgery.  "Lord, PLEASE no surgery."  "Lord, he can't handle another surgery."  Etc.

On Thursday morning, the Lord graciously brought to mind the thoughts, "What good does worrying over this chance do?  He hasn't had another surgery; he is coping with the nausea and feeling rotten.  You have already let your requests be made known to Me - constantly.   Can you trust Me to be good?"  Pete confirmed the message on Friday when he called from the hospital and reported that Joel was feeling much better.  "Let's agree not to worry, OK?"  OK.

We are not immune to the temptations of this trial.  We continue to face situations that arouse anxiety, and can choose to listen to the demons of doubt or to the Holy Spirit.  We appreciate those who pray for us, and trust that we will grow in faith, love and obedience to the will of God.

A Fine Line

We are getting ready to bring Joel home from the hospital, and it brings up all kinds of questions.  He's taking ten different medications.  Because of low appetite, most of his food intake flows through his "G-tube," and consists of cans of Two-Cal, a product containing "corn syrup solids, sodium and calcium caseinates," and dozens of other ingredients, mostly vitamins and minerals.

We have cooked and eaten a healthier diet, stressing whole grains and minimal processing, since our marriage, primarily because of Pete's research following his colon cancer before I met him.   We know this Two-Cal can't compete with real food, and in fact, the doctors and nurses continually stress the importance of Joel forcing himself to eat even if he lacks hunger.  So I asked the nurse what we could put through the tube in terms of real food puréed or blended.  Nope, she replied, too much chance of clogging the tube and causing infection.

We will face a dilemma daily - how much do we try to "treat" Joel with alternative foods or home remedies, and how much do we try to duplicate the hospital environment?  We have great respect and gratitude for the medical personnel who have kept Joel alive and brought him this far, but we know also that they operate under constraints of licensing and insurance coverage and liability that prevent them from giving him some benefits, and cause them to give him extra treatments that aren't necessary or maybe even helpful.

In the emergency room after David's ambulance delivery, the nurse scrubbed my stomach in preparation for a shot of Pitocin, ignoring my protests ("It's just routine") until the doctor came in and concurred, "No, she doesn't need Pitocin, she's going to breast feed."   The one-size-fits-all routines don't fit all.  Prayer, discernment and medical advice will help us do the best we can for Joel.

Freedom from Burdens

This week, Joel has steadily recovered from his surgery with no setbacks:  no fever, no coughing, no nausea or vomiting.  His return to Sister Kenny and a full schedule of therapy happened without a hitch.  We expect that removing the abscess of infection behind his esophagus freed him from a huge burden and will allow healing to proceed at a faster pace.

We’ve used the two extra weeks afforded by Joel’s delay in returning home for a good purpose:  decluttering.  We’ve brought three loads of clothes and miscellaneous household items to the local thrift shop, and I have 27 empty buckets, bins and baskets that used to store stacks of stuff.   We expect that removing this amount of clutter from our home freed us from a huge burden and will allow caring for Joel to proceed in a more organized and pleasant fashion.

How much infection or clutter has gathered in our spirits?  Pete and I just spent an hour discussing the possibility of cutting back on our, and our kids’, media consumption.  We all watch a lot of movies, the boys play video games, I read Internet articles and we all surf the Web and do social media quite a bit.  How much of a burden might this place on our spiritual healing and growth?  If we can reduce or eliminate these influences, might we be free to follow Christ more closely?  Stay tuned….

You Never Know

When we returned Joel to Sister Kenny on Tuesday after a fairly successful, though overwhelming, trial run at home, his neck and throat hurt badly and they decided to keep him another day to give those muscles a chance to rest before another car trip.  Dr. O, the internal medicine doctor, informed us they would perform a "swallow evaluation" to figure out why he kept having trouble.  We visited friends to examine their accessible van and appreciated the chance to ready a few more things for Thursday's homecoming.  We continued to pray that if Joel wasn't ready to come home, the Lord would make that clear to the doctors and prevent it from happening.

On Wednesday, Joel called to tell us that they discovered a leak in his esophagus with a sac of infected fluid between it and the spine.  At about 9:30pm, he said he was scheduled to have surgery to take out the abscess - that night!  And he wouldn't be able to eat or drink for seven days while the esophagus healed itself.  I pressed the nurse to give my number to the surgeon so he could call me as soon as he was finished, and Joel and I agreed that I would come to be with him on Thursday.

At 4:30 am, Dr. D called and in a hearty voice informed me that the surgery was successful and that Dr G, the original neurosurgeon from HCMC, had come over and taken the plates and screws out of Joel's neck also.  "It's hard for infection to heal in the presence of hardware so we removed it."  Wow.

Thursday morning I called the nurse's station as I drove, and the Sister Kenny nurse explained, "Oh, he's not on our floor any more.  Just a minute, I'll get you his new room number."  What??  I called the ICU at Abbott Northwestern Heart Hospital, and his nurse, Molly reported that Joel was experiencing almost uncontrollable pain, probably from the hardware removal.   I asked how long he would be in the ICU, and whether he would return to Sister Kenny after that.  "Probably overnight, and no, up to the spine or neuro unit."  I started fretting about this and that, but had the presence of mind to turn on the Christian radio station.  As I sang praise songs, they helped soothe me and remind me of God's power and love.  Then a d.j. came on and told how he was praying for a motorcyclist in a coma at the hospital and received the inspiration to tell him who God was.  "Holy, holy, holy is the Lord God Almighty, Who was and is and is to come."  And the biker started jerking and the machines started beeping and the nurses came running and - he woke up!  I determined to remind Joel of who God is when I arrived.

Molly had the pain mostly under control with a morphine drip plus pump by the time I got there at 12:30pm; it was at a level 6 or 7 instead of 9 or 10 (on a scale of 1-10).  I held Joel's hands for an hour, then one hand for another hour while we listened to praise music on his iPod.   The pain had been "as bad as I've had ever in my life," but by the time I left at 7 pm, he felt fairly comfortable and much more at peace.  Remembering who the Lord is and how much He loves us solves some of our problems at the deepest level.

Dr. O stopped in and expressed his gratitude that the swallow evaluation caught the infection, and reiterated that this may have been the cause of numerous problems for Joel.  Dr. A agreed, and further explained how much easier it is to treat infections without metal nearby.  Apparently bacteria love to hide in the pits and grooves of titanium hardware.   Dr. O seemed to think that Joel could possibly return to Sister Kenny when he's a little stronger, to make sure he's still up to speed for coming home.

As I drove back home (thankful that I was on 35W South because 35W North was backed up for at least 3 miles), I reflected once more on the futility of worry.  I lacked something to give Joel when I started the day, but the Lord provided it through the radio station.  Wherever Joel goes after this, Jesus will walk with him, and with us.

The Children Grow Up

Today Michelle and Andrew sang a duet in church.  "Lord, I Need You" is a contemporary Christian song based on the old hymn "I Need Thee Every Hour" (I wonder if Michelle and Andrew know that).  Their voices soared in harmony and their sincerity increased the song's impact on all of us.  But the quality of their "performance" astounded me.  "I didn't know they were that good!!" I thought as I listened to the blend, the tone, the pitch, and their musicality.

This sort of thing keeps happening to us as the children grow up.  Whether Michelle chatters away in Spanish on the phone to her friends in Mexico, or David informs us of chemical formulas and properties of elements, or Joel snags a rocketing softball and completes the throw to first base, and Sarah grabs his throw to get the runner out, I can't believe it.  When Daniel (or Sarah!) (or Philip!!) hits a home run, I'm in awe.  When Andrew lifts heavy weights, I gape.  How can these little whippersnappers accomplish feats that I've never dreamed of?

As our children spread their wings, they prove themselves capable of entering new spheres, reaching new people, and achieving success in new fields.  Our family isn't limited to following in Mom's or Dad's footsteps.  This is a good thing.  Apparently the author Hodding Carter Jr. is the source of the quote:  "There are two lasting bequests we can give our children; one is roots, the other wings."  The roots we trust we've given our children are faith in the Lord and in His Word, security and stability in our family, an ability to overlook offenses and to forgive, and numerous good values and morals.  We see their wings spreading now with all sorts of variety and emphases.  Praise be to God for His many gifts!

What are We Worth?

Following Joel (in his wheelchair) down the hall at Sister Kenny last week, I met three other folks in wheelchairs as we made our way to the Therapy Gym.  In the waiting room, several patients with various levels of disability anticipated the arrival of their therapists to begin the session.  Most of them have greater capabilities than Joel at this point.  They strive to sit up, stand alone, or walk without a cane; he tries to roll himself over or stand with the help of two therapists.  But it struck me that all these levels of effort are worthwhile.  Most of us take our ability to work for granted, while at the same time scorning those whose lives are "unproductive."  We subtly devalue people, whether disabled, young, old or in certain jobs, who don't contribute things we find valuable.  And we definitely elevate people whose work benefits us.  Think rock stars or Bill Gates.

I've always believed in my head that each person, regardless of ability, is created by God in His image, redeemed by Christ on the cross, and infinitely valuable.  This situation is helping that belief to travel to my heart.  Joel's activities of eating, exercising, resting and recovering benefit himself primarily, but they also advance God's Kingdom by bringing order out of chaos and overcoming evil with good.  Perhaps some invalids can "only" pray; that advances God's Kingdom as well.  A few individuals might lie in a hospital bed in a coma, or unable even to pray (as Joel did for several weeks); Jesus died for each of them and loves each of them just as much as He loves President Obama or Pope Francis.  Their continued existence may thwart Satan's evil designs.  I believe:  Lord, help my unbelief!