Calmare Treatments Begin

With the green light from Dr. B to start treatments for Katie on the Calmare Device, the next thing to do was to start weaning her off of the Gabapentin medication. We called Primary Children's, and under the direction of CC, Katie's nurse-practitioner, we did this safely and as quickly as we could.  Even so, it took about a full week to bring her down from 1300 mg a day to zero.

Although Katie didn't feel like the Gabapentin was doing any good at all, we found out at the end of the week, that um, yes, it actually was helping to dampen the nerve pain a little! Her nerve pain increased once she was completely off of it, and it made for a pretty rough weekend for her. :-( Dr. B explained that the medication would get in the way of the device doing its best work, so we didn't want any "dampening" of the nerves happening. Katie was on board 100%, even though it cost her a couple of very painful days.

It's now Thursday as I write this, and Katie has had 4 treatments out of her 10 that are scheduled. (Her case is very severe and complex, and there is a possibility that more than 10 visits will be needed.) Here's how Katie's visits go:

Katie arrives and fills out a log showing where her pain is, and what level it's at. She then has her leads connected to her "sweet spots". Sweet spots are the most effective places Dr. B has identified to put the electrical leads that help her specific pain areas. In the picture, you can see her feet's "sweet spots". :-) When they're all done, she's pretty wired up. (Lots of pain areas.) :-(

The device is turned on, and Katie says it feels "buzzy"; it's not painful at all. She can feel when the algorithms change up, which is pretty often. Her treatments last anywhere from 45 minutes to an hour. Her pain levels decrease significantly, if not disappear, during the treatment. After the device is off, Dr. B checks with Katie and measures where her pain levels are at. Since the very first visit, it is always consistently much lower, and we've seen this relief last after going home -- Monday's pain relief lasted an hour, and now we are up to 2-4 hours!

Her "homework" is to log how long the pain relief lasts at home. She brings it with her to the next appointment. And, it all begins again! Katie goes every day for the next 2 weeks (more if needed). The main goal here is to re-teach the brain that everything is OK, and it's no longer necessary to recognize the pain sensations. So, Katie is taking it pretty easy for the next couple of weeks. We have canceled physical therapy appointments, work, and other events that would stress Katie's system. Gotta baby that brain. Well, she picked a great time with it being 100 degrees outside this week! Doctor says stay inside and be cool and calm and don't stress. I know -- rough life, huh? ;-) Where can I get a prescription for that?!

Her pain levels at the beginning of the week were measured at consistent 8's, 9's and 10's before they turned the device on. Today, before her appointment, her legs were at a 2, and her arms were at a 4. WHAT?! INCREDIBLE! Things are going VERY well! Keep us in your thoughts and prayers that this wonderful progress will continue, and that the pain relief for our Katie can even be permanent!

And....join me in a happy dance, will you?

Calmare... with a side of Calamari

Early in June, John and I saw a KSL news story about an electrical device called Calmare that helps chronic pain and re-training the brain's pain signals. Those words -- "retrain the brain" -- immediately got my attention! Primary Children's was a place of miracles for Katie, but they could help very little with her chronic, severe nerve pain. (She was put on a pretty good dose of Gabapentin daily, but Katie felt little relief.)  Katie was coached often that the way out of this intense chronic pain would lie in "retraining her brain", and that this would be much harder than her physical or occupational therapies. Many techniques for coping with chronic pain were taught, but even so, it's been hard for her to face getting back into life with level 9 and 10 pain every day. While so very grateful for the miracles we have received so far, we assumed we would be in for the long haul for a complete recovery for Katie.

So, you can bet my ears perked up when I heard those key words "retrain the brain" from the news and -- wow -- the success stories and the accompanying video of past patients! Amazing. Miraculous! I got pretty emotional when the news story spotlighted its successes with nerve pain, specifically. Could this be a solution for Katie?

The funny thing is, I knew about this machine already. Katie's childhood friend, Alex Lambson, has used it (click here to read his story); he and this machine have been on the news before. There was even another story in 2011, about this device helping a Utah boy who suffered from a nerve disease. I don't know why I didn't connect the dots before. I can only thank Heaven for having KSL do a third story on this device now, just at the perfect time for our daughter. Yet another tender mercy and small miracle in this journey.

So, just what is Calmare Pain Treatment Therapy? Here is a description:

"Calmare Pain Therapy Treatment uses a biophysical rather than a biochemical approach, avoiding the adverse side effects and addictive properties linked to narcotic pain killers. A 'no-pain' message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient's pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way. Regardless of pain intensity, a patients's pain can be completely removed for immediate relief."

Hmmm, that's pretty techy. I can tell you it's a big step up from the TENS machine. The Calmare device uses multiple algorithms that scramble... I would encourage you to watch/read the three news stories I've included in this post for a greater understanding. Here they again if you missed the embedded links:

FDA-approved device offers non-drug option for pain (6-7-13)
Medical device gives new life to Utah boy (7-29-11)
Teen hit by lightning trying out new device to deal with pain (12-23-10)

We contacted the doctor interviewed in the story the first chance we got -- his office is located just 10 minutes from our house. Another blessing! It was arranged that Katie would come in the next day and be tested to see if her body would respond to the treatment. Katie was there for 2 hours being tested. Her body did respond to the treatment, and despite the severity of her pain and the complexity of her case, she was deemed a good candidate! Plans were made to have her come in for regular treatments. We were so excited!

As soon as Dad got home from work, we celebrated by taking the family to dinner at Olive Garden, where we ordered... what else? Calamari -- to mark the occasion. (Yeah, that's *squid*, to those that don't know!) Calmare...Calamari...get it?

Don't worry, this is how it looked when we ate it:

...and this is how Katie looked when she tried it:

but she DID try it! Woo-hoo Katie!
And don't worry, she survived the experience:

What a happy day, and we made a great memory together.

So...what's next? Katie must be weaned off the Gabapentin, and that will take all next week. Things might get a little rough. But it will be worth it. Stay tuned!

Life Back at Home

Katie's main goal, her "mantra", while at Primary Children's Medical Center was "I Want My Life Back". When she arrived at PCMC, her body was in a broken state due to her Dysautonomia symptoms and her terrible nerve pain and overloaded nervous system. I remember the day she was admitted -- her hands were curled in pain, her body slumped in the wheelchair and her head was down as she tried to cope with the overwhelming sounds, smells and light of the entrance to the hospital. In those days, she truly was getting through one day at a time, and many days were one hour or one moment at a time.

Katie chanted this mantra as she went through the hard days of a brilliant, but intense, multi-faceted therapy program there at PCMC. She focused only on this thought as she pushed through incredible pain and did what her therapists asked her to do. Her determination and this therapy program gave her her life back! Even her Dysautonomia symptoms diminished. As she got stronger, her whole system did better. For more information on the link between physical activity and Dysautonomia, click here.

Now back home, she is stronger -- out of the wheelchair, out of bed, and is pursuing life. She still has a way to go -- her stamina still needs to be built up, and the level 9-10 nerve pain interferes with everything. It has definitely slowed down her physical recovery, but when you look at where she was In April, her recovery is still a miracle.

In just one month, Katie has attended multiple outpatient therapies (this will continue for some time) and follow-up doctor appointments, as we form an outpatient version of "Team Katie". She has met with advisors and registered at Utah Valley University for Fall 2013 classes, and is returning slowly to her editing part time job. She also tries to exercise to increase her stamina and is following a daily schedule. (Well, most days..) ;-)  Next up, learning how to drive again and buying a car! On the fun side, her Dad and I have been absolutely thrilled to be able to BE with her again. We marvel that we can go out to dinner together, and go shopping together! My favorite shopping trip so far was when we went shoe shopping for Katie. How great was it to buy shoes for my formerly-wheelchair-bound girl?! They are short trips out, but they are trips out!!! Yay!!! Katie is also enjoying going out and doing fun things with Alex. Day to day life is much sweeter for her now.

She has done all of this with her nerve pain, which adds a sour note to life's sweetness. But it also makes her continue to be my hero. She is amazing, she has a great attitude, and her Dad and I couldn't be more proud of our girl. We thank our Father in Heaven for his sweet blessings to our family. We thank you for your continued prayers for Katie. They continue to make a difference in her every-days.

The journey continues!

Count Your Many Blessings...

The first Sunday we were home was a special one. This is just one of those little stories I want Katie to remember...

Katie is doing so much better, but she is definitely still in the 'recovery' stage. She wanted to attend church, but an early 9am start time is still out of reach, physically. Katie was able to slowly get herself ready and put together in time to attend Relief Society with me. Well, almost in time -- we arrived just a couple minutes late -- "hurry" happens at a slower speed than it did before.

I so looked forward to having Katie be among these special women in this meeting -- these dear, neighborhood women that have prayed, fasted, helped, and served Katie through her hard days. Their hearts have gone out to her.  I couldn't wait to show them what their prayers and service had helped bring about.

We ended up coming in just as the opening hymn was being sung. I should clarify -- we walked in -- Katie, WALKING! The hymn? "Count Your Blessings". As we sat down, we heard these words..."count your many blessings, see what God hath done!" What a moment.

The moment didn't end there. The lesson that day was on faithfulness in times of trial -- a subject our little family was learning about right now, in real time. This lesson spoke to Katie: it was as if it were a meeting created just for my daughter, ahead of time. Her special Sunday continued as so many came up after the meeting was over, many with tears in their eyes, hugging her and telling her how happy they were to see her, and to see her so much better... that she was a walking miracle.

She was surrounded by love. It was a very special Sunday. You can bet I was counting my many blessings.

 

picture credit: Willow Tree figurine, "Surrounded by Love"

Welcome Home

Home, sweet, home -- at last! After almost three weeks at PCMC, Katie is home again. As if it weren't a happy enough day, as we drove up to the house, we were greeted with welcome home signs and balloons.

Heartfelt thank you's go out to Katie's dear friend, Meg, for a completely awesome sign (complete with a pink zebra "Katie" -- so cool!) and for Aunt Jen, who decorated house and mailbox with cheery, happy balloons.

Katie was so touched, and was reminded again that she is not making this journey alone -- there are so many that continue to support her -- prayers, help and comfort in the hard days, and cheering, hugs and (gentle) high-fives in the happy days!

This was definitely a happy day.

GO!

Discharge day (AKA D-Day) at Primary Children's Medical Center
with Alex and CC, her very awesome nurse-practitioner

 

D-day was on Wednesday, and Katie was able to walk out of Primary Children's Medical Center under her own power. What a great moment! Way to go, Katie!!!

Today the next chapter begins! We still have so many pictures and stories to tell from the past month -- there was just no "down time" during her stay in the hospital. I look forward to documenting them and sharing them here on the blog. I might have to backdate a few entries so the story will make sense in the future, but they will still be new entries to read and enjoy. There are also many new adventures happening now, as Katie learns to resume her life, and builds up her body's stamina to do so. Stay tuned!

(cue up the happy dance music!)

Ready, Get Set….

We got the news that Katie comes home on Wednesday! These last days will be busy with lots of instruction and training on how to transition from a very successful Primary Children’s environment to home. The goal is to duplicate the therapies, schedules, and hard work – to keep the momentum going without a break.

Katie will finish up her last therapies, get appointments scheduled for the outpatient
versions, and be very busy saying goodbye to doctors, nurses and therapists who have become dear friends during her 2+ week stay here. ”Team Katie” has worked miracles! We are thrilled to be going home, but we are sad to have to say goodbye to some pretty amazing, talented and compassionate, caring people and to Primary Children’s Medical Center itself.  This is a very special place. We were so blessed to be able to bring Katie here!