Hospital Blankets Make Great Tree Skirts

I have started volunteering at our daughter’s high school each day and staying on campus for the entire seven hours. (Her school staff has been AMAZINGly supportive through this crazy medical journey!)

Writing is, by default, taking a sideline in my life for a bit. I am, however, over-the-moon to announce that Deb Gruelle and I will be team-teaching a workshop at Mount Hermon in April. I will also be leading a course entitled Praise, Worship, Jubilee! as we celebrate the 50th anniversary of this conference. If you have ever dreamed of writing, I so hope you will join us.

Life is crazy, but we do have a pre-lit Christmas tree up. My hubby and youngest set it up as a surprise one Saturday in early November.  I don’t have the time, energy, nor gumption to decorate it this year, so my husband bought 4 dozen candy canes and our 12-year-old had fun hanging them while he was home sick one day last week.

For a tree skirt, the white blankets they sent home wrapped around our girl during her latest ER trip (we are now at 6 ER visits, several via ambulance, in the past 2 1/2 months) made a lovely addition. Setting out our new Advent Calendar next to the tree will probably be the extent of this year’s decoration.

Her medical record says she “pulled her hair out,” but I can testify she lost half of her hair volume (in patches as large as 4×6 inches, as well as in showers of individual strands), all within 36 hours. She was not pulling it!

We shaved her down to a tiny fuzz of hair, since what she had left was so patchy and stringy. Just a month later she went into the shower with hair and came out with a dozen new bald patches! Since her hair was not really even long enough to grab that second time, she couldn’t have pulled it out if she wanted to.

We are waiting to see an autonomic specialist at a major hospital in Arizona, and hope to find answers there. We have January appointment currently scheduled. A large chunk of my daily time is spent in multiple calls to this clinic, waiting on hold, trying to find out if any new cancellation slots have become available over the past two hours, in hopes of getting to fly down to be seen before Christmas.

We are tired.

Yesterday’s advent reading greatly blessed my heart. It is perfect for my reader-friends in our In Darkness Sing community:

“The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them has light shone.”
Isaiah 9:2 (ESV)

It isn’t about the frills of Christmas. When you strip joy down to the most basic of elements, this season is about the Hope brought to earth by One Baby.

 

 

 

Crisis Amidst Crisis

If you’ve been following along on our 15-year-old’s medical saga of the past two months, you know things are rather crazy in our home. I’m sad to say that this faint-free spell only lasted a week. We’ve had code blue calls from her school the past two days in a row again.

Our nerves are so tightly strung that the phone can’t ring or a door open without us physically jumping, every muscle tightly wound, ready to respond to the next medical crisis. Rick called to say, “I love you,” yesterday, and instead of answering the phone with my typical “Hi Handsome,” I saw his number on the screen and grabbed it with a panicked, “Is everything OK?” God is the anchor we are clinging to, but this is HARD!

Cast all your anxiety on him because he cares for you.

While our 18-year-old was driving our girl and me to her doctor yesterday, our son nearly had to pull over the car because of sudden, rather intense chest pain and trouble breathing. He got us safely to her doctor, I called my mom to come take over with R., then I rode along with J. who was able to drive himself to urgent care two blocks away. A breathing treatment did wonders and our oldest is now carrying an asthma inhaler. So thankful this medical issue was quickly addressed and had a cut and dry solution!

When anxiety was great within me, your consolation brought me joy.

Explaining Soup

It has been 7 weeks at 2 days since our 15-year-old’s saga started. We’ve been in local ER 4 times, twice resulting in 2 night local admissions, once sent home, and most recently the local ER visit resulted in her getting ambulanced to an out-of-state hospital for a 3-night stay last week. (The ambulance made it in 4 1/2 hours in the middle of the night with clear weather, but drive has taken as much as 8 hours with bad weather and traffic.) We also flew ourselves to a different children’s research hospital three weeks back, where she spent two full days in about 10 1/2 hours of outpatient appointments, followed 3 nights inpatient.

Between all these hospitals, I’m happy to say we have ruled out pretty much every imaginable life-threatening issue we would need to take imminent action to address.

We know a ton of things that are NOT wrong with our girl, and for each we are very thankful!

She has been off medication for over a week (last dose was a week ago Wednesday) and fainted again Sunday night, twice Tuesday (instigating the ER trip that resulted in Stanford ambulance), but not at all since. Perhaps we are dealing with  something in the autonomic world??? (Yes, we started with a tentative POTS diagnosis on our very first hospitalization, then that has been repeatedly questioned, medications have been tried with severe complications, and now we seem to possibly be circling back around to something potentially related to the original diagnosis.)

We anticipate about three more months of intensive testing, likely to unfold in about four different states, before we expect to have clear answers. I’ll probably not talk much about specifics, or answer most questions, as it is all rather overwhelming, confusing, and medical advice is often contradictory.

What I do know, what we cling to now more than ever before, is that God is sovereign, that He has a good plan for our daughter and for our family, and that He is loving, just, and wise.

Current issues are fainting (though not in the past six days – thank you Lord!), blindness, hair fall (but most of her bald patches are filling back in with new growth), some recent hearing loss (as of a week ago Sunday), and fairly intense cognitive/memory issues (since Tuesday, Oct. 23rd). Tuesday morning our daughter initially did not even know her own name, when the school was trying to wake her from her first faint. After that, she knew one classmate, but only the name and not why she knew the name or who this person was. It was a hard struggle, but she could piece together who Rick and I, and both of her brothers (though one only by nickname and not given name) were.

The one and only name she did not struggle to identify, came about an hour after initial faint. I asked, “Who is your Savior and Lord?” Without a moment’s hesitation she beamed, “Jesus!”

Our girl has gradually regained more and more grasp on reality, remembering a few past events. She currently has about an 80% grasp at retaining most new-to-her information as we tell it to her. She remembers next to nothing of this entire past couple of months, does not remember having had either surgery earlier this year, or that she has ever broken any bones – she’s broken 8 for the record.) She does not know her favorite color (Rick says blue, I think it was green) so has decided (remember, she is blind, so this is a memory choice) that she now prefers yellow.

We eat soup and tacos each several times per month; she did not know either word and we had to explain both. In most things she acts like a mature nearly 16-year-old. Random words and memories are totally non-existent to her. And we are dealing with a lot of breakthrough 4-year-old type questions and emotional behavior.

Please pray as Rick and I and her school, as we start arranging accommodations to face these newest challenges.

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Literal

My heart leapt with joy at the sound of singing coming from my daughter’s bedroom a couple weeks back. Beautiful melody is common from my teen who has won multiple talent shows and serves as a lead singer on her youth group’s worship team. What caused this song to capture my heart was the literal way it illustrated this blog’s “In Darkness Sing” theme.

 

At her request, over our past month, I have refrained from sharing identifying details. However, issues have now progressed to a life-altering levels, tested and researched enough to lead us to believe we may be facing these challenges for the long-haul. Hope and peace continually collide with fear, anger, and grief.

 

What made my songbird’s worship touch my heart so deeply 15 days ago (and every day since)? The understanding that just the day before her song reverberated down our hallway, her eyesight had totally vanished, after just a 48-hour battle. In the terrifying wake of uncertainty, blind faith in her Creator was being very literally tested. Her grace astounded, challenged, and convicted me as I wrestled through my own confusion.

I am writing from our 3rd hospital in 3 ½ weeks, this time a major, out-of-state one we had to fly to on Sunday. Monday involved 4 ½ hours of one-on-one appointments with two different specialists.  Yesterday was another 6+ hours with an even more unique sub-specialist. We were admitted last night and got little sleep as major testing unfolded throughout the wee hours.

 

Questions and theories abound.

 

Answers remain few.

 

Our daughter remains sightless.

 

As we were sitting in our first appointment of Monday morning, our son called with his own fresh, raw, devastating news. Rick flew home on Tuesday to get back to our boys as one of them walks his first real grief journey.

 

My in-laws have been here. I’m so thankful. However, they cannot stay past Friday. Since testing could continue into the weekend or beyond, I’ll be checking into another Ronald McDonald House for an indefinite length of time. We are hoping there will be a room available tomorrow. In times like these, I really miss my ability to drive!

 

This I know:

Earth is temporary and fading. God is constant and eternal.

 

If my girl can sing praises to Him, in the midst of her darkness, I choose to do the same.

Missed Deadlines

I’ve missed at least three deadlines and a doctor’s appointment this week. I’m sorry if you were one of the people I let down. I’ve reached my limit and I know it!

One of my children had to go back to Renown (where they were admitted 2 weeks ago) via ambulance from school yesterday. They sent us home last night so that we could go to a previously-scheduled appointment today (fastest treatment plan). We went to that appointment with hospital bags packed, in case we got admitted to Saint Mary’s (other main hospital in Reno) today, but by God’s grace, those bags were not needed.

My child will not be allowed to attend school again until at least Oct. 8, and will have an MRI as soon as insurance approves. Vision is the immediate concern, as yesterday’s hit to the head darkened this child’s eyesight dramatically, now only seeing lights, or details about two inches from the nose, about 17% vision.

The bigger scare is that this is day 18 of the underlying medical crisis we still don’t have clear answers over. We now counted about 11 major (and a few minor) events in 2 1/2 weeks.

Rick is out of country until Friday night. He has been amazingly supportive to the best of his ability, but it is really hard on him to be so far away. Please pray for our other kids too. Our parents and adult son are taking up all the driving duties as I’m still without a driver’s license since my strokes.

Physically I’m utterly fatigued, exhausted. I fell asleep today in the length of time it took a son to go get a drink of water. We were talking when he came home, while I rested in bed after a medically-intensive day. He was thirsty, so ran to the kitchen for a drink. When he came back a moment later, I was asleep. He tried to tiptoe out of the room, but the phone jolted me awake. Our entire family is in desperate need of long, refreshing, restorative sleep tonight.

I don’t have words to even try to describe God’s grace and peace in the midst of this storm though. I’m afraid any attempt will come off sounding corny. Simply know this. Life is very hard. God’s love is so much bigger!

Guidepost Writing Course

I love to write.

I love to help other authors polish their skills.

So when I learned I could review this product and tell you how to receive two hours ($90 value) worth of Master’s level video writing instruction, plus all the course extras, all for less than $25, I was ecstatic! You’ve got to check out the amazing Guidepost Academy training course, How To Tell A Great Story.

That this advice is offered through Guidepost, a magazine known within my writing circles for being a really tough magazine to break into, has me especially intrigued. Since I hope to submit a story for their 2020 competition, I really want to hear all they have to say!

Given our past month (Who am I kidding? Make that seven years!) of medical craziness, I have honestly not had opportunity to complete this entire course yet, but I am so looking forward to doing so.

Read what others have said about the high value of this incredibly low investment:

Guideposts Academy 5 Stars

By Patricia Parish

July 8th, 2018

This course an incredible opportunity for me. No university could have done better. So much for so little money. I thank you all so very much. Will be sending something to you all regularly even if all I get is rejections! So grateful for the helpful information, I am tearing up as I write this. Patricia (Pat) Parish, Blessings to the teachers and all your personnel.

Rating: 5 of 5

Quick Course that is Very Helpful

By Barbara Litchfield

April 30th, 2018

Thus course is excellent!  The short recorded sessions with Edward, Rick, Colleen, Jim, and Amy, were full of helpful information for writers in any genre.  The workbook download helped me with note taking and reinforced the learning.  I also am grateful that I can retake the course whenever I need a refresher.  It is definitely worth $24.99.

Not The CODE BLUE I Know

Our school’s “Code Blue” is NOT the same as a hospital flat-line code.

Just sayin’.

This would have been really nice information to know before one of our kids’ schools called me at 9:30 this morning, to say they had to call a Code Blue on this kid today!

 

Our school’s code blue simply means “serious medical concern”. It is an all-staff call for medical assistance, not usually a statement of resuscitation needed!

The cardiologist’s decision late yesterday afternoon, to try to cut medication dose in half, was an utter failure.

The good news is, this child was on a 48-hour heart monitor, so whatever the heart did or did not do during this episode, is now recorded, and will become known early next week when the test gets read.

We went to the orthodontist at noon, as that appointment has been rescheduled 3 times, due to medical events, and was now WAY overdue. I only earned a few eye rolls from my child when I insisted on caution at the speed the dentist chair reclined on was straightened back up afterward.

We also tried to go get my temporary orthotic for my toe, across town, only to find the staff left at noon today.

*sigh*

Otherwise, my child is now home for the day, as the school wouldn’t risk the liability of further attendance today, even though they have been feeling fine since half an hour after the incident.
Exciting times.
Yet we will praise Him!

What a lead in to the announcement I was typing up when the phone rang…

I’m launching a new community for my author page TODAY – facebook.com/groups/InDarknessSing – for all kinds of griefs and heartaches, like infertility, pregnancy / infant loss, death and bereavement, brain injury and stroke, chronic illness, marriage or parenting struggles, disappointment, disability, discouragement.

Please come check it out. I’m trying to grow my numbers really rapidly as publisher eyes are on this project. I hope to build a real place of support and encouragement where heavy hearts find hope in Jesus. Please spread the word!

On my PAGE, facebook.com/HarvestingHope, I try to gift you with near-daily inspirational content to uplift and encourage you. It’s my “give-out” page, yet I know it is hard to interact as a community here.

So today I invite my readers to a private GROUP where we can interact together and make friends. Please join me at facebook.com/groups/InDarknessSing and share this link with all your friends looking for a home of hope.

When you join, AND EACH TIME YOU SHARE THE LINK and leave a comment and link to your share, there on the group, I’ll enter you in a give-away! I’m planning to draw a gift winner ever 100 new likes over there. Share however you can: your blog, message boards, social media like Twitter, Pinterest, Facebook, even word of mouth (just have new members tag you, so I know to count your word of mouth share that led a new friend there).

Please be a Burden Bearer and help lift one anothers’ loads, as we strive together to sing praises to, and worship, our loving King, the LORD Jesus Christ, in the midst of our deepest struggles, and darkest trials. InDarknessSing is a community where my readers can joyfully fellowship and encourage one another through ongoing interaction.

Best Foot Forward

I’m talented.

Ankle bruise was already there before base of big toe got injected.

The joys of poor balance.

I have SEVERE (as in x-ray doesn’t even show a joint exist anymore) arthritis at the base of my big toe on the less-stoked side, as well as that bone spur of extra bone growth. It took both the doctor and his nurse – that’s two medically trained, full-grown adults – pulling with all their strength, to separate the joint enough to insert a thin needle between the bones.

Another thank you from the strokes. Nearly 7 years of putting excess pressure on my “good” foot, developed serious degenerative arthritis.

Wednesday evening, I just got two CCs of 2 kinds of steroids and 2 anesthetics, injected into the joint. I go back in 3 weeks to have a specialty insole molded, and as soon as possible (today or tomorrow I think I have a ride?) to get my temporary orthodic.

Oh, and both of my big toe bones grow crooked too (fun side note, not stroke-related).

I’ll be posting an invitation on Friday to my new In Darkness Sing interactive hope community on Facebook. See you there!

Again

Our family is WAY too acquainted with Emergency Rooms, ambulances, hospitals, and medical tests! This is the third immediate family, overnight hospitalization, of 2018.

We were back in the ER Sunday night, after 3 closely-related medical crises in less than 24 hours, for one of our children. (If you know us personally, please don’t ask details or name names publicly, as kids get tired of being featured in my blog posts! Contact me privately if you have questions, please. I’m happy to talk details one-on-one.)

As we were being discharged after one o’clock Monday morning, the issue repeated, so discharge papers were changed to transfer papers and we took an ambulance ride across town, from our smaller satellite hospital, to the children’s hospital at our big, main branch (where I lived after my strokes).

There was serious talk of ambulance transport to the huge medical school children’s hospital hours away, but in the end, we came home late on Tuesday instead. We now have three local specialists lined up for appointments in the next week or two.

We started new medication Wednesday morning, and have now gone 44 hours without another event (7 major, and 3 more mild crises between Saturday night and Wednesday afternoon). We are praying this new medication prevents further events.

Three specific prayer requests are:

  1. Significant reduction in the severe nausea this medication is causing. (Side effect lists indicate it could resolve as we adjust to taking it.)
  2. Profound increase in thirst and ability to tolerate hydration. (Nausea is making it very hard to take in fluids.)
  3. Resolution of symptoms, allowing a safe return to school and outside activities, and ability to quickly get fully caught up with all missed assignments. (Missed this entire school week. As our kids, jr. high, high school, college, are getting older, a solid week of missed school, plus the additional classes that will be missed for follow-up care, is a pretty big deal.)

Our church has been beyond amazing. Several friends showed up in ER, bearing hugs and gifts. Then the next day of admission across town was a fairly steady stream of encouraging visitors. We feel loved and very blessed!

This child could hardly fit in the hospital bed that was so piled with cuddly comfort items. Even the nurses were amazed! I was awed by the boldness and maturity this kid exhibited in seizing the platform to boldly share Jesus with lots of hospital staff.

I am a tired Mommy.

God is good, all the time!

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