Blessed with Breath

So.....I've obviously fallen behind on blogging.  Sorry about that!  Life has been phenomenally busy between all of the kids' activites, nursing school, work, church responsibilities, medical visits, etc., etc.  I have no idea how to keep up!  But for anyone who has been worried about the lack of updates on Annika, I have good news.  She's doing okay!

Last night my Dad shared this picture that was taken several years ago after Annie came home with a school project.  It seemed like a pretty great way to re-enter the blogging sphere.  Annika's heart (while labeled upside down) seems to be responding well to her current medication regime.  At her last cardiology appointment, the HCM (hypertrophic cardiomyopathy) hadn't worsened and her Ejection Fraction (a measure of how well the ventricle is contracting) had returned to a normal range.  This news is certainly encouraging.  We have another big follow up appointment in a week and are hopeful that the positive trend will continue.

In terms of swallowing, the red construction paper esophagus is also doing better.  (Well, technically we've been more concerned about the little flap called the epiglottis that guides liquids into the esophagus, but it's not shown.)  Anyway, while Annika's epiglottis still isn't responding as quickly as most, it's improved enough that she is now cleared to drink regular liquids through a straw with her chin tucked.  At her last barium swallow study, there wasn't any aspiration or deep penetration when she drank in this position.

Annika's surgical incisions are also healing nicely.  While the scars are impressive, she is now cleared for swimming.   She also has full range of movement of both arms.  (For six weeks, she couldn't lift her left arm above shoulder level for fear of displacing the lead into her ICD.)  So in other words, no restrictions!

Unfortunately, we now have a new concern that has to do with the airway leading to her lungs, as represented by the straw.  (The art project has two, but in reality we only have one.)  For a while, we've been hearing some wheeziness/constriction in her throat.  At first it was pretty mild but it's been getting progresively worse.  An x-ray revealed some sort of round mass below her larynx that needs to get checked out.  In this picture, you can see some of the constriction.  

We met with ENT, and a week from Monday they are going to perform a bronchoscopy.  For Annika, this entails spending the night in the hospital.  Given her medical history, they want to be extra careful.  My suspicion is that whatever is going on is related to the trauma of being intubated, especially during the last couple of days when she was pretty delirious and thrashed.

The good news is that Annika is feeling fine.  Her oxygen saturation levels are great, and if you ask her, it doesn't feel hard to breathe.  She just sounds terrible and is really short of breath with exertion.  The other night she was sleeping in our room, and I woke up confused about the sound of a nearby car alarm.  Turns out that it was just Annie's very noisy breathing!

So yeah.  There you have it.  An update on Annie Mae.  She's one brave little cowgirl, taking life a step at a time.

*****

Addendum.  While I know health care professionals deal with critically ill patients all the time, Annika's story still seems to have made an impact.  Several weeks after Annika's incident, I found myself at Primary Children's pharmacy.  As I gave a brief medical history, the pharmacist stopped me and said, "Wait!  I know this story.  This just happened here, didn't it."  I was shocked that even with hundreds of patients at Primary Children's, Annika was known.

Our dear friend and neighbor Diane shared an even more touching story.  Diane's daughter works as a hair stylist at a nearby salon.  While we've never met this daughter, she knew about Annika from her Mom.  Well, while she was cutting hair, an ER nurse from Salt Lake Regional came in to have her hair styled.  The nurse began to talk about this young girl who was brought in by her father in full cardiac arrest.  While she didn't share specific details (HIPAA), it soon became obvious that she was talking about Annika.  The woman shared how she was one of the caregivers who performed CPR on Annika.  In fact, she was the nurse who first felt her heart start beating again.  She talked about how much it meant that Annika came back to Salt Lake Regional to thank everyone for saving her life.  While neither Diane's daughter nor the nurse are particularly religious, they discussed how the nurse could feel Annie's spirit near and knew that she wasn't gone.  As Diane shared this story with Jason and me, we all cried.  It's been hard for Diane to see her daughter drift away from the church over the years.  In talking with her daughter, they were able to spiritually connect and mutually recognize the hand of God in saving a little girl.

Annie's health crisis has touched us in so many ways.  On several occasions she's commented on how God must have kept her here for a reason.  So many reasons!  But the truth is, we are all here for a reason.  Every beating heart is a miracle.  King Benjamin speaks with gratitude of "Him who has created you from the beginning, and is preserving you from day to day, by lending you breath, that ye may live and move and do" (Mosiah 2:21).  From our heart to our lungs to our brains to our kidneys, life is a miracle.  I'm grateful beyond measure to the healthcare providers who saved my daughter physically.  No matter what the hospital bills, I can never fully repay them.  How much more grateful am I to Jesus Christ who came to restore us spiritually.  While I can never repay my Savior, I will offer my broken heart with faith that he is the Master Healer.

*****

Final Notes:  I'm including the text of a talk I gave in church a couple weeks after Annie came home from the hospital.  This blog is the best place I have to keep note of blessings I want to remember.

27^th Ward, January 15^th, 2023

 

Good morning Brothers and Sisters,

I think most of you know, but my name is Kara Wheeler, commonly referred to as So-and-so’s Mom or the Bishop’s wife.  Earlier this week I learned that the ward was short a speaker in sacrament meeting and volunteered.  In retrospect, I have no idea why I did that, especially given our family’s recent challenges.  I promise to try to keep this light—crying is exhausting.

I figure that since our ward has been reorganized, I’ll go ahead and reintroduce myself.  I need a re-do since I was feeling super quirky six years ago and introduced our family through the lens of our teeth.  President Pickett still hasn’t let me live it down—turns out we share a dental phobia.  When he and Nancy came to visit our family in the hospital a couple weeks ago, they brought a lovely gift bag that among other things, included a toothbrush and toothpaste.

So our family moved to Salt Lake six and a half years ago.  We love it here, as evidenced by the fact that we’ve lived here more than twice as long as anywhere else in a married life.  Other places we’ve resided: Provo for BYU, University of Illinois at Champaign-Urbana for grad school, Lyon, France for a gap year with kids, St. George for an architectural fellowship, New York for Superstorm Sandy Relief work, and Omaha, Nebraska for our first “real” job.  Jason is an architect who runs a small non-profit design center.  As for myself, several years ago I felt a strong prompting to go back to school and pursue nursing (my first degrees were in the humanities and Teaching English as a Second Language.)  While I’ve always been interested in the medicine, I don’t think I grasped the full import of my going back to school.  The prerequisite and nursing school courses have been invaluable in helping our family navigate Annika’s recent medical challenges.  I just wanted to take a moment to acknowledge and recognize this tender mercy and the Lord’s guiding hand in my life.

As long as I’m acknowledging, I might as well recognize the elephant in the room (or in this case not in the room as she is joining via Zoom.)  My guess is most of you would recognize our spunky little Annika as the munchkin who would somewhat irreverently dash up to the podium in the middle of sacrament to steal the Kleenex box.  Thank you all for your love and support and stuffies and meals and snacks and cards during her health crisis.  It means the world!  Annie is doing so well—while some cardiac concerns remain, she’s back to singing and dancing and teasing her siblings.  

Speaking of siblings, Annika has three.  Eli is a 7^th grader at West High who loves clarinet and robotics.  Talia is a sophomore who loves violin, ASL, and bullet journaling.  Brooklyn is a Senior who enjoys cello, traveling, and seminary council.  All three of the kids adore Ultimate Frisbee as well.  I think the best part of our family is that our remarkable kids all seem to enjoy spending time with one another.

When I told Jason I would talk, I had no intention of getting into our family’s recent drama.  However, in preparing my thoughts, I realized that I couldn’t avoid it and speak with any sort of sincerity.

As we begin our study of the New Testament, I can’t help but think of Jairus who fell at Jesus’s feet “²³ And besought him greatly, saying, My little daughter lieth at the point of death: I pray thee, come and lay thy hands on her, that she may be healed; and she shall live.”

Like Jairus, our family has experienced miracles.  We have called upon the power of the priesthood to heal, even in a hospital room where her care was so critical that the nurses could not pause while we prayed.  While it felt awkward at the moment, in retrospect I can better appreciate the fusion of scientific and spiritual healing.  I think our cardiologist prophet, President Nelson, might appreciate it as well.

However, the miracles began long before that blessing at Primary Children’s.  I recognize the hand of the Lord in guiding our family to Salt Lake where we happen to reside at the intersection of three amazing hospitals.  I am grateful for our 4^th and P chapel, and for the blessing of service that had Jason and Annika at the church at the moment of her cardiac arrest.  I am grateful for the inspiration that led Jason to rush Annie to the ER instead of calling 911.

Yesterday our family visited the ER at Salt Lake Regional Medical Center to thank the first of hundreds of medical personnel who worked to save her life.  After we left, we set a timer to see how long it took to drive from the ER to the 4^th and P Chapel.  The verdict?  2 minutes and 10 seconds, and that was with more stops for traffic.  If I ever had any doubt before, I truly believe that doing the Lord’s errand will put you in the right place at the right time.

So today I have been asked to speak on Strengthening Faith.   As Annika’s “incident” is pretty much always on my mind these days, I found it a bit ironic that the first scripture on faith I looked up was this: “I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he (or she) live” (John 11:25)

I know that many of us in this room have experienced loss.  I wish faith always brought the earthly physical healing Annika experienced.  Still, I find some measure of comfort in understanding that in the long term, Christ’s resurrection will bring life and healing to all.

I also find that the idea of vitality really helpful in understanding faith.  Far from being an abstract concept, in my mind faith is active and often tangible.  Faith is Jairus, the ruler of a synagogue ( and I’m guessing most of the synagogue was not fond of Jesus) falling at the Savior’s feet.  Faith is the woman with an issue of blood touching Jesus’s hem.  Faith is pleading in prayer for someone you love.  Faith is coming to sacrament meeting to remember Jesus’s sacrifice. 

Elder L. Whitney Clayton taught that “Faith always moves its possessor to … physical and mental action.”⁶ “To have faith in Jesus Christ means to have such trust in him that we obey whatever he commands. There is no faith where there is no obedience.”⁷

For me, this link between faith and obedience is really important.  When I feel my faith lacking, sometimes it helps me to get busy with the “doing” of obedience as I work to regain the covenant path.  It’s a bit of “fake-it-til-you-make-it” attitude, but living as if I felt my faith burning bright often helps rekindle the flame.  If I want to feel the influence of the Spirit in my life, I need to intentionally put myself in holy places where it can be felt—at church, in the scriptures, while journaling tender mercies, listening to sacred song, pondering in the temple.

Like many, I’ve often felt like the father who came to Jesus for help healing his son: “Lord, I believe!  Help thou mine unbelief.”  Please indulge me as I share the full account:

“On one occasion, the Savior encountered a great multitude of people who were listening to a discussion between His disciples and the scribes. He then asked the scribes, “What question ye with them?”

A certain man, kneeling down to Him, answered that he had asked the disciples to cast an evil spirit out of his son, but “they could not.” The father begged Him, saying, “But if thou canst do any thing, have compassion on us, and help us.

“Jesus said unto him, If thou canst believe, all things are possible to him that believeth.

“And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief.”

The Savior then rebuked the evil spirit and charged it to “come out of him, and enter no more into him. And the spirit cried, and rent him sore, and came out of him.”¹

 

Perhaps all we really need is the faith to believe that Christ can help us with our unbelief.  In moments of crisis we come to Him, tearful and pleading on bended knee.  Yet true faith is developed through small acts day by day.

I like Elder Clayton’s counsel:

“No matter who we are or where we live, there is much about our daily lives that is routine and repetitive. As we go about this dailiness, we must be deliberate about doing the things that matter most. These must-do things include making room first for the minimum daily requirements of faithful behavior: true obedience, humble prayer, serious scripture study, and selfless service to others. No other daily vitamins strengthen the muscles of our faith as fast as these actions. We also must remember that genuine fasting fosters strong faith. This is especially important as we faithfully seek to fix deeply embedded character flaws which go “not out but by prayer and fasting.”¹⁶

 

To conclude, I’d like to return to the daughter of Jairus.

³⁶ As soon as Jesus heard the word that was spoken, he saith unto the ruler of the synagogue, Be not afraid, only believe.

³⁷ And he suffered no man to follow him, save Peter, and James, and John the brother of James.

³⁸ And he cometh to the house of the ruler of the synagogue, and seeth the tumult, and them that wept and wailed greatly.

³⁹ And when he was come in, he saith unto them, Why make ye this ado, and weep? the damsel is not dead, but sleepeth.

⁴⁰ And they laughed him to scorn. But when he had put them all out, he taketh the father and the mother of the damsel, and them that were with him, and entereth in where the damsel was lying.

⁴¹ And he took the damsel by the hand, and said unto her, Talitha cumi; which is, being interpreted, Damsel, I say unto thee, arise.

⁴² And straightway the damsel arose, and walked; for she was of the age of twelve years. And they were astonished with a great astonishment.

⁴³ And he charged them straitly that no man should know it; and commanded that something should be given her to eat.

I read this and feel such love and tenderness in the Savior’s actions.  His words of comfort: “Be not afraid, only believe!”  He cast out the noise of the world and reunited the daughter with her parents, quieting their wailing hearts.  And then his attention goes to the girl—knowing exactly what she needs—something to eat!  This part makes me smile.  For a couple of days after being awoken from sedation, Annika was not allowed to eat and depressed.  In an effort to brighten her mood, we broke out a gingerbread house to decorate.  Before we realized what was happening, she popped a gumdrop in her mouth and started sucking on the frosting.  Our physical need for nourishment is real!

I’d like to bear my testimony that our need for spiritual nourishment is just as real.  Jesus Christ is the bread of life and the Living Water.  May we all exercise faith enough to Come unto Him and Believe.