DEFEAT
Monday, Feb 10
The Insurance Industrial Complex has won this round.
No one seems interested or able to help get the scans before next week.
We have been reading on Reddit (always with a grain of salt) and enough people have reported similar symptoms to Cindy that we feel like that the problems have to do with the disrupted nerves that are a predictable consequence of the surgery. Not everyone experiences these problems, but some do. Even that bit of information is helpful. Many people experience this level of pain for some months. It seems like most people experience some level of healing over time.
We have a regularly scheduled Dr Apt on Friday. Scans are scheduled for Monday. We are ready to come home.
If there is something wrong that will need surgical intervention they will not do it right now. It seems that an emergency on our part does not create a corollary response in the medical community.
Of Course
Monday, Feb 10
Cindy riding the “Punishment Horse” at Fort Bridger.
Dr. Office. We submitted the request for an MIR and CAT scan
Hospital: This request is too general and needs to be submitted with more detail. We will contact the Dr and get new orders written
Hospital Scheduling: The insurance company will not give us approval for 3-5 days so we are scheduling this a week from today, next Monday.
Insurance: Nothing has been submitted, we can’t accelerate it until it is submitted.
Hospital Scheduling: We have not submitted anything because the Dr has not sent us the clinical information that we requested. When we get that information then it has to be reviewed by our clinical team and our radiological team and that will take 3-5 days.
Dr Office. Sasha (who takes care of this issue) is with the Dr in surgery and will not be back in the office until Wed.
We have talked to Sasha all weekend. She is who wrote the order to have the MRI/CAT scan today.
So the inefficiency of the system is very clear:
Shuffle responsibility
No one is able to make a reasonable decision
Look for someone else to blame.
Hope that the person goes away in defeat!
Our next step is to go and enter through the ER. This will cost all of us lots more money, and take valuable time and resources away from others. They have told us if we go through the ER it can be done today.
THIS WILL MAKE YOU CRAZY!
We are going to wait a minute for a call back from Sasha.
Creeping Pain
Monday, Feb 10
Cindy at Great Sand Dunes NP
Early morning report.
Unfortunately, the gains of yesterday were slowly eroded through the night as Cindy’s pain started crawling back.
She did not sleep until about 6 AM.
We are in a weird limbo - waiting to see if the hospital will call, waiting to see what can be done, waiting, disconnected from home and place and people.
Praising God for the refreshment of Saturday night and Sunday.
Bracing ourselves for what is ahead.
6. A psalm of David. (Selected)
Have mercy on me, Lord, for I am faint; heal me, Lord, for my bones are in agony. My soul is in deep anguish. How long, Lord, how long?
Turn, Lord, and deliver me; save me because of your unfailing love.
I am worn out from my groaning. All night long I flood my bed with weeping and drench my couch with tears.
My eyes grow weak with sorrow; they fail because of all my foes.
Away from me, all you who do evil, for the Lord has heard my weeping.
The Lord has heard my cry for mercy; the Lord accepts my prayer.
A Super Day
After a long sleep, Cindy was ready to get up and get out.
She wanted lunch ✔
We found a Spring Creek near ✔
She wanted to walk ✔
It was raining, but we found a Super Target ✔
She needed to buy a baby shower gift and we solved it at Target ✔
She wanted to watch the Super Bowl ✔
I got some WD40 and fixed the chair!✔
Light
Cindy walking over a volcano in Hawaii NP. This is the way we feel - walking on a thin crust praying that it does not erupt into fire again.
Early Morning Report
She slept about 14 hours, only briefly waking for meds and RR.
The pain is at ZERO!
The druggy fog of her head is about 7.
Waiting for scans.
Mid Day Report
NO SCANS today. We got word that our insurance does not deem the situation an “emergency” therefore they will not approve them until Monday morning. Such a strange posture to take. If we go into the ER, which costs tons more, then we could force the situation, but due to the new meds and Cindy’s pain going down, now we don’t qualify for the scans. I imagine that the Red Tape will be such that they will not approve the scans on Monday because that will be too efficient, so maybe Tuesday but why do it on Tuesday when there are three more days left in the week?
Cindy and I discussed it (though she is very loopy and not qualified or allowed to make any important decisions) and decided to stay hunkered down here at the hotel. It is very comforting knowing that I can see the roof of the hospital in the distance. We are both so afraid that the pain might come rushing back that the cost of the hotel room is worth the stress of going home and then needing to rush back.
We have packed the bags so we can leave in an instant and head to the ER, but for now are holding our breath and tiptoeing around the room (if you are in pain they tell you to breathe instead of holding your breath and I’m not tiptoeing, but I am trying to be quiet which is like real work to me. My favorite line from the Three Stoogies is “You guys could make noise stuffing a mattress.” I am naturally loud).
Pain is still at ZERO. With enough pain medicine in the right configuration, Cindy has been able to achieve a state of peace and rest, but it is a shadowy existence right on the edge of sleep and not a long-term solution. We need to figure out if this pain is “normal” caused by the trauma of the surgery or if it is “abnormal” and some other situation has arisen, thus the scans.
We have been told lots of stories - some good, some bad, of complications with this surgery that have required further surgeries and we are praying that this is not our situation.
Can you imagine locking Kyle in a small room all day and asking him to be still and quiet?
The following images are are result and it is only 12:30PM
I’m so thankful for science, medicine and doctors.
This schedule has been challenging to follow
This sign on the door of the hotel says it all. We are not ready to go out of the room and head home.
Just when I think she is asleep, I shift in my chair and it squeaks (It is the noisiest chair imaginable. If I leave the room I will go to the store and buy some WD40 and spray every part) one eye pops open and she asks me a question. She is resting, but her mind is whirring.
The walls have eyes and I am being watched
Sleeping Beauty
Cindy at Disney World
Last night was the worst night. It started OK. She slept from 10-11:50PM. I got up and gave her the midnight meds and she slept a little until a very bad spell from 1:10-3:00AM. We got up, she tried to walk, went to the couch. I rubbed her ankle (somehow it helps her hip). We watched some TV, anything to try to get her to focus on something else other than the pain. Through the tears she said it reminded her of the days long before when our children were tiny and we got up to feed them in the night. We would sit on the couch and watch the Wild, Wild West. She said the only difference was that then we had a baby to show for it, but now only tears. Finally, the pain subsided and she went back to sleep, but it did not last long.
She got up, walked, rubbed, tossed and turned.
Then the worst attack of the whole expereince began. At about 6:10AM the pain went through her like lightening. She called to me like a she was hanging off the edge of a cliff. We tried to respond quickly with ice and massage, but it rushed out of control. At 9:50 AM the pain lowered for a few minutes to about 5 and we thought she had made it to the other side. During that lull we talked to the PA and she made another adjustment to the medicine and said we should come on Monday or Tuesday for some scans and possibly a work-in appointment. The pain must have understood that we were trying to vanquish it and it returned with a vengeance. Up and up the pain ratcheted until it reached a 10 (hypothetically as high as the pain can go) and did not come down. After 3 hours we made the decision to head to the ER.
We decided to return to the hospital where she had surgery in North Frisco. It would be over 2 hours, but it is where her doctor is and Cindy bravely said “Let’s go to Frisco.”
We “packed” our bags, stuffing and grabbing and generally panicking. We got in the car about 12:45PM and started driving. It was hard to stick close to the speed limit.
When we were about 15 minutes from the hospital the pain began to relent. It continued to fall to levels she had not seen for several days. We pulled into the ER driveway and parked. She walked and then we made a plan.
Pause. Breathe.
Sasha, the PA, called back and we told her we were about to go in the ER. She gave us a plan. We could go right in and they were ready to prescribe new meds. In the morning we would get an MRI and a CAT scan help discern the problem OR we could go to the hotel and she would send the exact same new meds to the local pharmacy and then we would go to the hospital in the morning for the scans.
We chose option B. The hotel is 300 yards from the hospital. We drove to the HEB Pharmacy and got the new meds and got them into Cindy. By the time we got to the hotel she was nodding off.
We got her into the room and into bed and she is sleeping, really sleeping, for the first time in days.
I reworked the medicine crate, repacked the bags, and sat down to rest.
We are praying that we can get through this night and to the tests tomorrow and some answers.
Finally, asleep
“In peace I will lie down and sleep,
for you alone, Lord,
make me dwell in safety.”
The seige
Cindy in Iceland
I’ve started calling them “Pain Sieges.”
Siege, Noun, ˈsēj also ˈsēzh 1b : a persistent or serious attack (as of illness).
Synonyms: attack, bout, seizure, case, spell, access, fit, turn.
The pain comes suddenly often rising from a 4 (on the pain scale) to an 8 in just a few seconds. The worst attacks max out the scale (10) for as long as an hour — no time to catch her breath, no release, just pain. The pain meds are not reliably able to extinguish the roaring pain, but it rushes forward consuming all of her strength and then leaving her weak and exhausted.
From Wed - Thursday there were probably 14 attacks, like a persistent army attacking retreating, regrouping and then coming back again.
From Thursday night until Friday there have been 4.
The worst ones come at night. Last night from 12:45AM-2AM, then again at 7AM-8:45AM. At about 4 PM and again at about 7PM two surprise attacks were launched. They each lasted closer to 45 min and maxed out at 9 instead of 10 (progress).
In comparison to Wed and Thrusday it was a better day, but it would be impossible to sustain daily living under such an assault.
We are praying that each day will bring some healing and some diminishing of the pain.
We can feel our anxiety rising because night is coming.
“We’d better get back, ‘cause it’ll be dark soon, and they mostly come at night… mostly.”
The dogs are rarely more than a few feet away. They keep reaching out to Cindy, attentive to her in ways that are not typical.
TUMBLED in the Sea
“The waves broke and spread their waters swiftly over the shore.
One, two, three, and then they hurried back to gather themselves for another assault.”
In 2007 Cindy, Steve Akin and I were walking next to the ocean near Peacehaven, England when a sneaker wave rose out of the sea and lashed them both. I was fortunate to be the furthest from the water and missed the assault.
I wish I had a good story to tell, but right now the waves of pain have been making an all out assault on Cindy.
A new nerve pain that starts in her back and travels down her left leg has developed that did not exist before surgery.
When the pain comes it quickly surges to a 9 or 10 on the pain scale. And it’s like a swimmer fighting against a rip tide.
Pain meds do not calm the waves.
The last three nights it was as if the tide was coming in. It is hard to watch.
We talked to the Dr’s office. They have increased her meds. They are confident that this will pass. Their years of experience and our relationship with them has given us comfort, but it is still scary.
She has not slept much, but at about noon today the tide went out and she seemed to fall into a deep sleep.
I’m trying to stay quiet (hard for me).
We are praying for a low tide tonight.
“I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea . . . I heard a loud voice from the throne saying, Look! God’s dwelling place is now among the people, and he will dwell with them . . . He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain,”
Last night we looked at the colors in the sky praying they were a good sign. The beauty was deceptive and the night was dark.
The dogs know something is up and are very sensitive to the pain. They keep circling and bumping up into us.
Misty Morning
Cindy at Youthfront Youth Camp
Got up with little relief from the pain.
As long as I (Kyle) was rubbing her ankle, Cindy was able to get about 2 hours of sleep.
The doctor’s office called and we had a good conversation. We have adjusted here nerve pain medicine and hoping that will help. One side effect of the surgery is a hematoma which presses on the nerve - it is not common, but also not rare that this happens. We are prayerful that the hematoma will dissolve and release the pressure.
The doctor helped alleviate lots of the fear:
don’t think its and infection,
don’t think that it is a shift in the hardware.
she has not done anything wrong
Still hurts like crazy
The dogs are ready for Cindy to get moving faster
They decided to pitch in
Grey Skies
Cindy at Beaver’s Bend S.P.
Recovering from illness can feel like the struggle of Sisyphus, endlessly pushing a boulder uphill, only for it to roll back down with each setback. Just as Sisyphus repeated his task, it feels like Cindy is caught in this same journey, making it feel exhausting. Get up on schedule, take medicine, rest, walk — hurt. She got up with a new deep pain in her left leg that she just can’t seem to find relief from, it is very disheartening.
She does not want to take more pain medicine, but that is the plan and we are trusting the plan. Cindy keeps asking if she has done something during the recovery to create the new pain or is it some result of the surgery? Is it temporary or lasting? Did she trade one pain for another?
We called the Dr. but have not heard anything which just makes us feel isolated and alone.
Our community has been great, food, flowers friendly calls and visits, but Cindy does not feel like talking. So we are waiting and praying for the time to pass and for her body to knit back together and for the weight to be less so she can get it to the top of the hill and push it down the other side.
We went outside to walk and the sky was so grey and moody. It looked like we felt. The clouds twisted around blocking out the sun each time it tried to penetrate the veil. We know that the blue skies are there, but are cut off from them. We know the truths: God loves us, God is the great physician, this is going to take time. It’s just that sitting at the bottom of the valley knowing that the only way out is uphill in any direction is exhausting.
Albert Camus pondered the story of Sisyphus. Instead of seeing a hopeless struggle and absurd repetitive and fruitless journey, he suggested instead, that there is meaning in perseverance—each effort to rise again is an act of defiance and hope, proving that even in struggle, there is resilience. Cindy is a fighter and one of the strongest people I know. She is going to keep struggling. It is an honor to get to be so close to someone who is fighting so hard.
Our prayer requests are twofold.
One, may the new pain disappear and the old pains grow dim.
Two, may her appetite reappear. All food is bland and a challenge to get passed the gaurdian of hunger toward her stomach. May tastes delight her and fill her with the love by which they are so carefully prepared.
How to Eat a Snake
Time to Fly
slog
Cindy about to go into a tunnel in S. Korea that goes all the way to the N. Korean border.
There have been lots of very positive moments since the surgery.
People have been great and encouraging.
She has been able to walk with more and more confidence.
She is almost able transition herself from standing to lying down without help.
She got clean, no more sticky residue, clean hair. The restorative power of water.
Today, she bumped up against the wall.
The pain is still holding on to her like sticker burs in your socks. You pick one out and there are ten more behind and they often hurt pulling them out.
It’s hard to find any comfortable position.
The recovery is slower than she wants it to be.
She still has no appitite. I’ve been trying to get her to eat, but nothing sounds or tastes good. Protein shakes, protein yogurt are sufficing for now.
Walking
We are now focused on strengthening Cindy’s body after the trauma of surgery. She is sitting, walking and trying to take her medicines on schedule.
We have reached out to our Doctor to clarify a few things as she prepares for her first shower. (Lot’s of dont’s in the literature and this is not the moment to abandon all the directives).
The day was so beautiful Cindy decided that it was time to go outside and do her walking in the driveway. She did great! See video below).
The complicated thing is that every day she finds a new place on her body that hurts, as one pain recedes another emerges.
This is going to take awhile.
Home
Cindy in Lancaster, Penn
We headed out of the hospital finally and were faced with a jumble of traffic and no good way home. Cindy and I are never at our best when trying to deal with tricky driving directions and the map seemed initially confused as if it was saying, “Go back into the hospital!” Finally, we started threading our way through the maze of traffic. I’m sure people zipping around me were clenching their teeth as they passed me. I was leaving more than normal space infant of my car because suddenly slowing down was the worst for Cindy. Those kind of gaps just beg for people to force their way forward in hopes of getting home 30 seconds earlier but with higher blood pressure.
We stopped on the way home and walked around the car, once to the right and then to the left like Joshua and the walls of Jericho. I can’t imagine what that looked like to others in the parking lot. Cindy asked for a Whataburger Vanilla shake and it was the first thing that had appealed to her tastes buds and I was glad to get her one. Not wanting to be rude and have her drink alone I grabbed a Mexican Chocolate shake (limited time on the menu and worth the effort).
We got home late (never leave far North Dallas at 4:30 Pm on a Friday afternoon to head to Athens). With our stop it was 7:30ish when we pulled into the driveway. Then it took a minute for us to get Cindy settled after the long car ride. She ate a little, walked a little sat a little and then headed to bed.
Now that I am responsible for running the Pharmacy I made a device to track the medicines, I’m thinking of patenting it (see the picture below).
In the hospital the nurses came and woke her up to give the medicine, now that falls to me. (10PM, Midnight, 3AM, 6 AM, 7AM, 8AM, Noon, 1PM, 3PM, 5PM, 6PM, 9PM). It was a weird night of sleep then suddenly being awake. This is how yoyos must sleep.
Discharge
Cindy in South Korea near the DMZ
Signed the final papers. Loaded the last stuff into the van. Headed back inside to get Cindy and start the journey home to Athens.
Been a long and painful day - all the spots were hurting more than yesterday. Then getting all the other stuff off of her was also painful, especially the neck line. Her skin is thin and lots of the tape was not ready to let go, stitches needed to be cut, no fun.
Ready to get to our house.
Homeward Bound
Cindy’s favorite camel, Humperdink.
The PA came to the room and gave us the spreadsheet of medicines and the schedule of delivery for the next 14 days until she has her first follow-up visit on Feb. 14 (Happy Valentines Day 💛).
Then discussed the changing situation - the hip pain has diminished some (yeah 🎉) but as it has gone down the abdominal pain has risen (boo 👎). Her back has not been hurting (yeah 🎉) but being in the bed and having to been in awkward positions has made it ache (boo 👎). She is regularly walking, takings meds, sitting up, and then retreating to bed 😴.
After lots of discussion, it was recommended that we head home this afternoon 😮. One more doctor has to sign-off, but that looks like the plan. While she is nowhere near back up and running the need does not involve lots of skilled nursing/doctor care, but can be done by her #1 volunteer (it’s a lot of pressure 😬).
Now the trick is going to be.
Get a dose of pain meds right before she gets in the van 🚐.
Drive calmly thought Dallas with no anxiety (likely driving about 4PM so should be smooth sailing 🤦).
Then we have to get all her meds so that we do not miss anything on her schedule (no idea how that is going to happen 🤷).
I saw Cindy sleeping in the bed this morning and something about the position and the color reminded me of this Picasso, The Old Guitarist.
slow but Steady
Cindy in Korea
Cindy has been filling the prescribed routine. Get up, walk around, visit the facilities, sit and eat, stay in the chair for 45 minutes then back to bed for rest. She has been adding in an extra walk between meals. One of the nurses said she was doing the best on the floor!
We have had good visits from friends from Athens, our pastor friend and wife from Kaufman and a relative who works near the hospital.
All have been good. The pain meds and muscle relaxers mean that Cindy’s eyes quickly drift away and light sleep settles over her easily.
We are still waiting for her to “release the hostages” that is necessary for GI recovery and have been increasing various foods to aid in the escape plan.
Still making plans to come home on Friday . . . a little nervous for the next phase.
Milemarkers
Sitting in the Design District of Istanbul
It’s Thursday morning and Cindy is still making progress, but not as fast as she would like.
Positives:
Her GI system has given her permission to order a normal breakfast and an omelet is on the way!
She has been able to get up multiple times, get the back brace on, move about and then get back to bed.
The staff are been incredible, attentive, and encouraging.
Challenges:
As part of the back procedure, “material” is put within the cage, the round wedge device that is screwed into the vertebrae, to accelerate bone growth to complete the fusion of the bones. We knew this, but the mystery material was not on our radar screen.
The magic sauce is made up, in part, of BMA - Bone Marrow Aspirate. We thought that it came from the vertebrae above and below the cage, but in fact it came from Cindy’s left hip.
Bone marrow aspirate (Clicking on this link helped me understand the situation better) is a procedure used in conjunction with anterior lumbar interbody fusion (ALIF) spine surgery to help stimulate bone growth and fusion. A bone marrow aspirate is a sample of bone marrow fluid collected using a needle.
The sample is usually taken from the top of the hipbone, but can also be taken from the front of the hip.
The procedure is relatively straightforward and involves minimal discomfort.
The active component of the sample is the mesenchymal stem cell (MSC), which can help create a regenerative environment.
For super nerds who want to understand the grafting procedure read this link
When Cindy woke up, the pain she felt was on the left side and she believed it was part of the main incision, however, over time it has become clear that the majority of the pain she is feeling is from this BMA procedure.
With regular pain meds and ice packs, she is able to keep the pain manageable, but as the ice warms and the pain meds diminish, the discomfort rises. This is the source of her greatest frustration.
This is the prayer request for today - that the pain in the site of the BMA begins to diminish.
She got up, took a walk, ate some breakfast (not as much as she hoped, “I’m not sure the rest of my body is ready for food.”) and is now waiting patiently until it is time to go for a second walk and get back into bed.
What follows are some pictures from inside the room.
Creeping forward
A walk in Cain Park
Cindy slept this afternoon. Dinner was delivered (Broth, Jello, Iced Tea, and Ensure) and so Cindy got up for one of her assigned sitting times. On the way to dinner (in her chair) she took a lap around the nurse’s station.
She went fast and strong.
30 minutes of sitting and then another lap around the floor.
It has been dark and rainy outside all day. Maybe tomorrow will give us some sunshine and more progress.
Afternoon Rest
Cindy Rafting in the Tetons
The day has been a rotating door of nurses, hospital officials, physical therapists, occupational therapists, cleaners, and guests.
The room has grown quiet and we are planning for Cindy to close her eyes and rest.
We I am not good at remembering when she got what medicines. I have started a chart.
The next exciting thing is lunch. Clear liquid - broth, jello, juice, clear ensure (very exciting).
She will sit up to eat lunch and then take walk #2.
Morning Joy
Three great milestones.
One, Cindy is up and walking. PT came, got her brace on, had here stand and walk to the nurses station (60 feet) and then back to the room. An increase in pain, but manageable. No dizziness. Mostly awkward with all the tubes and wires.
Two, Cindy is sitting in a chair. She is out of bed and sitting for the next 45 min.
Three, Her first “meal” all clear liquid, broth, jello, juice, protein drink.
Praying:
The incision site has more pain, surrounded by an ice pack now.
First Time Standing
On the way back to her room
First Breakfast