Kathryn's Pages

So glad to be home!! To get a bath, to see Mimi, to put on make-up.

We are so thankful to be DONE!

Kathryn is doing well.

Now thank we all our God!

For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.

Ephesians 6:12-13 NIV

Well, it’s been an intense week!!!! So thankful that we’re almost done!!!! Of course Kathryn begins the countdown to finish as soon as the treatment starts. There are hours and days during this horrible, yet needed, treatment where we begin to believe that we can NEVER do this again. There are moments when we are sure that we can’t do this for another hour.

We’ve accrued some fresh Ketamine stories this go ‘round, but at this moment Kathryn is doing OK and we see God’s constant hand of help. We are so thankful for all the clinicians who care and help and learn this Ketamine oddity even when they don’t have the time to do so.

To save time, the following is a text that I wrote to a friend yesterday. When I poured out my heart in this text I needed to share the details very honestly. I usually don’t care to do that on this site, but maybe someone out there needs to hear this….

To Robin, a Cardiac ICU nurse and an amazing person:
You’ll relate to this and be glad that you were not the CICU nurse that had to do this one! So at 5:30 in the morning some administrator made the “smart” decision to move a Ketamine patient (Kathryn) out of Cardiac ICU and into regular ICU. This means that 2 very sweet nurses had to go against their professional judgment and wake a person on Ketamine who had just finally gotten through great panic and intense pain to finally fall asleep at 3 a.m.

Now the most amazing part of this was the speed at which it was done! Our experience demonstrates that most things don’t happen fast in hospitals, but this was treated like a “Code Blue”. A team of people showed up to grab all our stuff and shove us out the door of our ICU room within moments! Kathryn’s Ketamine drip can’t be stopped and she can’t be out of bed so of course all went with us. Now, to wheel the bed, IVs, and all packed stuff through the maze of hospital corridors at 5:50 am, the moving team deserted us and left the 2 petite CICU nurses to transport the comical pile of things and Kathryn through elevators, dead ends, locked doors, etc. (This hospital has been added onto many times and to get from one addition to the other requires a degree in geography.)  All the while, Kathryn on Ketamine is trying to talk herself through it and hold herself together (Kathryn: “it will be alright, it will be alright”- think Dustin Hoffman in Rain Man) through lights, sounds and movement that just should not happen to a person on Ketamine. If it wasn’t a nightmare to us it would have been hilarious as these sweet but very embarrassed nurses got lost many times in the unending maze.

My brain worked in emergency mode and with God’s help, I held myself together. But today my evil hope is to give that administrator some intense CRPS pain, load her up with 80 mg of Ketamine and whisk her through bright lights and elevators. It would be an enlightening trip for the world of medical care!

Kathryn was so sweet and held up like a trooper until she got to the new room where she of course proceeded to completely fall apart… panicking and crying inconsolably. Due to the stress of moving her pain soared; she described the pain in her left leg vividly while screaming that her left ankle felt like it was giving birth! There were not enough meds in the hospital to calm her down at that point.

While on Ketamine, probably because of the emotional stress of being on Ketamine and/or being bedridden for a week with no distraction from the pain, CRPS pain can be as high if not higher than usual. (The receptors turn down after treatment.)

Ketamines are such a strange animal that they don’t belong in hospitals. They belong in some not yet created Ketamine Land that is supported by insurance like a hospital, yet caters to the strange world of Ketamine treatments! The ignorance and lack of special accommodations for Ketamine treatments means that every clinician that walks into Kathryn’s hospital room can make a difficult thing become hellish!

True, there exists special clinics with people trained in all the oddities of Ketamine treatments, but they cost 12,000 and up each visit, no insurance coverage taken, and they only handle day (not week-long) treatments.

As we consider talking to Kathryn’s doctor or hospital administration about our great hallway Ketamine adventure, we remember and stay acutely aware that very few hospitals in the US allow this difficult treatment. This hospital is doing us a huge favor by working the strange requirements of this treatment into their normal hospital world. Hospitals don’t want Ketamines for at least 3 very good reasons; they can be very difficult on staff, they can be very difficult on patients and hospitals receive minimal insurance money for them. So we won’t make waves; Ketamine is all we have for Kathryn right now, and we are at their mercy.

We are comforted by praying for the cardiac patient that needed the CICU room and their family.

There’s no other words for it…this can be a horrible treatment! As you’re going through it you swear you will NEVER put your child through this hell again. But of course if her pain goes up to 10 plus again in 9 months we’ll do whatever it takes.

Dave got here Wednesday and Joe got here late last night to help. We have 2 days to go; in the past they have been the most difficult, but with the hallway adventure behind us, all is up from here.

One saving grace is Kathryn’s sense of humor; there are many laughs along the way. Presently Kathryn is waiting with great anticipation for her “butt pill” (suppository). She’s gonna kill me for this one later.

God is with us and gives us the joy, love and strength we need to do this thing!! Actually he tells us that “We can do all this through him who gives us strength” Philippians 4:13

Kathryn was admitted today to Forsyth Hospital in Winston-Salem NC for Ketamine treatment.

She’s already missing home, friends and her kitten Mimi. (Mimi’s Tail)

With pain averaging at 8 or 9 since mid November she is thankful for this treatment despite it’s difficulty!

Kathryn’s been on Home Bound school since her flare in November and hopes to feel better and get back to school.

He said to them, “When you pray, say:

A week of Ketamine does a miraculous job of temporarily turning down the extreme overabundance of pain receptors that cause so much hellish pain in CRPS. A week of Ketamine is also hellish, although the folks in ICU do everything they can to make the patient comfortable.

At this point, there is no other choice; there is no other treatment that gives relief. It is time to pray about another week in the hospital for Kathryn.

As you always have, please join us in prayer as we ask God for his help and guidance.

Much love and many thanks to all! Merry Christmas!

Kathryn’s having a Ketamine treatment as I write this. She’s handling it well enough that I have time to write a few sentences :)) We are so thankful for Carolinas Pain Institute for their brave fight every day against chronic pain!!!

Yesterday I “met” over the phone a CRPS patient who lives in Richmond. She has had CRPS for 6 years as an adult and has suffered beyond what most of us can imagine! As with many adults with chronic pain she is abandoned by her family to be her own advocate as she deals with multiple diagnoses, huge financial challenges obtaining medical treatment, and much more!

Without family advocates, finding caring clinicians can be much more difficult!! Without someone who feels well and clear to speak for them, adult pain patients are frequently disbelieved and verbally abused by clinicians. Alone against a system and in crippling pain, they are lost in a recipe for hell on earth. My dear friends, please pray for Kathy!

Lord, please show me what I can do to help in the battle against chronic pain!

Prayer request: – For all insurance companies to cover Ketamine treatments for all CRPS patients.

My thanks and love to you all!!

“Therefore you do not lack any spiritual gift as you eagerly wait for our Lord Jesus Christ to be revealed.” Corinthians 1:7 NIV

Hi Everyone,

Before I give an update on Kathryn I would like to ask with all my heart for prayer for Kathryn’s Uncle James who is suffering with chronic pancreatic symptoms including severe pain. He is in the hospital and soon may have to undergo very difficult surgery.

AND, once again, thank you so much for YEARS of prayer for Kathryn!!!

Kathryn has only missed 1 day of school this year due to pain! So even though she still has constant CRPS pain, it and the accompanying fatigue, nausea and headache is not always at a level that disables. Her health is stable enough that she can fight these symptoms through a half day of school.

We believe half days at school and mold remediation play a huge part in her higher function this year. Her CRPS pain can still easily spike to an 8-9, but comes back down to a 5-6. That’s HUGE!! Because for 6 years we simply have not had ANY treatment that could do that. In most CRPS bodies, pain wants to go up, but it can’t remember how to come back down.

We have a strong city;
    God makes salvation
    its walls and ramparts.
 Open the gates
    that the righteous nation may enter,
    the nation that keeps faith.
You will keep in perfect peace
    those whose minds are steadfast,
    because they trust in you.
Trust in the Lord forever,
    for the Lord, the Lord himself, is the Rock eternal

Isaiah 26 1-4

We continue to thank God for all your love and prayers! We pray that Kathryn will be able to be present at school more this year.

Her function has been higher this summer since we made changes to her room (see below). We continue to believe these changes to Kathryn’s room lessen the environmental irritants to which her auto immune body responds badly. Many others who suffer with auto immune diseases feel better when they use similar strategies.

Kathryn enjoyed feeling better this summer and used the energy to finish an incomplete English class from last year. She was able to rest and to have some fun! And she began to plan for college.

We try not to focus on her pain, but if asked she says that she is averaging about a 6 out of 10 on the pain scale. The nausea and headaches that crippled her last school year are much improved! As usual, fatigue and pain are our first concerns for this school year and so we plan to lessen the number of classes taken to enable Kathryn to graduate with her class next Spring.

We are so thankful that so many of you continue to pray daily for Kathryn! That truly staggers me with joy and thanks!! You inspire me!!

My latest favorite passage:

“Come, all you who are thirsty,
    come to the waters;
and you who have no money,
    come, buy and eat!
Come, buy wine and milk
    without money and without cost.
² Why spend money on what is not bread,
    and your labor on what does not satisfy?
Listen, listen to me, and eat what is good,
    and you will delight in the richest of fare.
³ Give ear and come to me;
    listen, that you may live.
I will make an everlasting covenant with you,
    my faithful love promised to David.
⁴ See, I have made him a witness to the peoples,
    a ruler and commander of the peoples.
⁵ Surely you will summon nations you know not,
    and nations you do not know will come running to you,
because of the Lord your God,
    the Holy One of Israel,
    for he has endowed you with splendor.”  -Isaiah 55 1-5

Changes made to Kathryn’s room:

• remove all wall hangings, posters, books, etc.
• remove all carpet and upholstered items out of  room
• wipe all wipe-able surfaces with bleach/water mixer -floors, walls, furniture, shelves
• put clothes in plastic tubs after being washed
• use air purifier with HEPA filters
• use sealed/zipper vinyl bag on mattress and box springs (This made such a difference that 2 months later we replaced Kathryn’s mattress and box foundation with an easy to clean metal foundation and foam mattress. We chose a foam mattress that was tightly sealed after manufacturing. Standard mattresses may sit in a warehouse for months loosely sealed and that warehouse may have air-conditioning mold similar to our house.)
• new pillows with allergy preventing covers
• wash linens and blankets frequently
• close off central AC ducts into room and install a new window unit
• replace HEPA filters in vacuum

Hello all, this is Kathryn writing this update instead of mom. I’m needing to say a big thank you to each one of you!

Last week my mom and I traveled down to North Carolina for a Ketamine booster. The treatment went very smoothly with little discomfort. Because of this treatment my function has increased slightly and I am feeling well enough to complete most of my daily tasks. This means I’m turning most of my attention to preparation for applying to college and my senior year of high school! Thank you all so very much for your continued support and prayers. You all have been so encouraging and dedicated, and my family and I appreciate it more than can be said.

Describe your pain 😦

If you must endure a Ketamine treatment DO NOT forget your blanket and pillow from home!

Hi Guys, we are back at Carolina’s pain Institute with Dr. North for a Ketamine Booster. Kathryn’s pain was averaging around a 5 but in the last week it shoots up to a 9 at times. 

We would have done this treatment even if her pain were still holding at a 5 but due to the pain increase, it became more critical.

Joe or Dave could not come with us to help this time so we’ll see how this goes. Kathryn did some of the driving on the way here; obviously she can’t help with driving on the way home 🙂 

PRAYER REQUEST: I am concerned about the ride home. Kathryn is so heavily sedated after Ketamine that if I have to stop on the way home I am apprehensive for her safety as I leave her in the car. So please pray for her today! Love and thanks to all!

Holding you all in prayer as we trust The One who cares for us with immeasurable love.