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: