College!

A lot has been going on since our last post; there is much to tell and catch up on! But, I had to post this milestone right now -- in the moment -- Katie achieved one of her major goals from Primary Children's Medical Center today:  enrolling and attending college on campus. CHECK!

She had a great first day. Katie is taking one class (a writing class, of *course*) on UVU campus, and two more on-line. She was very tired and in a little pain at the end of her day, but as you can see, one happy girl! She mentioned to me how happy she was to be back in a classroom and learning and studying again. It's been a long journey getting her here: she has had to fight through Dysautonomia, a brain injury, and this last terrible year when she lost her health and was in such terrible pain. But, she did it! We are SO PROUD of you Katie! College looks great on you!

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!

Our Favorite Scripture

 

Isaiah, chapter 40, especially verses 28-31,
has a very special meaning to our family.

We have watched this scripture come alive this week,
and we are so grateful to our Father in Heaven
for the blessings He has sent to our family.

Best. Mother's Day Present. Ever.

Katie had a little surprise up her sleeve at the end of the week. As fate would have it, we (Mom, Dad and Alex) all came to PCMC to see Katie in separate cars that day. She greeted each of us as we arrived standing by herself, and then WALKING toward us without help! There were tears of joy from parents, and big huge bear hugs all around. We were all on a "rocky mountain high" for the rest of that day! The therapists thought it would take weeks, not days to see her walk. Amazing therapists and nurses, hard work, great attitude, faith, and prayers = miracles. For all those that have been praying and fasting with us -- wearying the Lord on Katie's behalf -- these pictures are for you.

I know it's a few days early, but I'm counting it as the Best. Mother's Day Present. Ever. No gift will ever top this.

Here are a few pictures of Dad's moment. So sweet. Enjoy.

A Super First Week

Katie was able to adapt to the new set up and got into a routine and followed a schedule for the rest of her first week. It was a pretty eventful week that, frankly, took our breath away!

We continue to drive up every day to be with her in the evenings -- her "reward", as she calls it, for working so hard during the day. The daily driving up and back, the parent meetings with doctors/therapists/nurses and keeping minimal routines going at home are keeping me pretty busy -- way busier than I thought I'd be during this time. I had looked forward to daily updates on this blog, and catching up on projects with hours and hours to myself. Hah. Not happening. ;-)

Katie is also busy -- she goes to 5-6 therapies all day -- her day begins at 8am and is finally done around 4pm. That's a full-time schedule for anyone, but we are talking a day full of physical therapies! That's a *really* full day; and she's doing it all with nerve pain. Medicines to help have been given to her, but they take anywhere up to 6 weeks to build up in the body and give real relief you can feel. They are are also "helping" Katie's pain by desensitizing the most painful areas; that means pressing down on palms and standing full-soled on feet. This works, but it's hard to tell your body, "hurting more will help me hurt less". She has accomplished so much, but she confides to me that she often feels very sick and dizzy while doing these therapies. Dysautonomia is always in the background, ever with her. That makes her accomplishments even more amazing to me.  My pink zebra is a superhero!

The doctors, nurses and therapists are all so impressed with Katie, and love her attitude and good heart.

Here are some of the things that happened during Katie's first week:

• Short term and long term goals set.
• Katie was expected to make her own daily schedule, get herself dressed and order her own meals. Yay for independence!
• Gave Katie a "toolbox" of distraction techniques to deal with intense pain.
• Lots of desensitization :-(
• Using hands to pick up game pieces and practice fine motor skills with fun things like art projects and painting nails :-)
• Practicing writing: her handwriting got better and better each day.
• Walked on a very slow treadmill increasing time from 2 minutes to 5 minutes.
• Self propelled in wheelchair, then walked with a walker.
• Practiced balance by standing on a half-round ball, and hit foam balls with a foam bat. Other kids in therapy encouraged Katie to try and bean various therapists in the room. LOL!
• Discovered music therapy is her favorite time of the 'work' day.
• Tried acupuncture (!!!) and biofeedback this week and learned some relaxation techniques.
• Vitamin D was discovered to be low, D supplements added to medications.

We are so proud of Katie; blown away by all that she has been able to accomplish! Our little family feels so very blessed. Blessed by a loving, tender and merciful Father in Heaven.

Blessed to be up here and have her be cared for in this wonderful place. Blessed by all the prayers, fasting, and sweet thoughts that have been sent our way. I know in my heart that Katie could not have endured the time we had to wait to get her here, or accomplished so much this week, without the strengthening and sustaining of all your prayers. Faith and prayers are not just pretty words; they have a very real power. Thank you. ♥

Sent Home

Day #2

{First, a disclaimer: I thought my days with Katie would be me sitting in a hospital room with hours to myself to write and catch up on projects while Katie was away working hard with her therapists. As you will see, this did not happen, and I am struggling (in a good way) to find time to get to a keyboard at all and keep things updated. I apologize for not having more regular updates. I will try to do better!}

Day 2 started early. Breakfast was delivered, and a full day of therapies started at 8:15 am. (Each day Katie would be working from 8am-3pm on different therapies, with breaks, rests and lunch time in-between). (Physical, occupational, speech, behavior, music and even integrative medicine therapy -- all were available to her and scheduled into her days.) We got Katie dressed, fed and ready and off she went. I met with doctors after that; we talked about plans for the week, some tests they wanted to do and medication changes Katie needed. Nerve pain (Neurontin) medication would be increased, and Lyrica (another nerve pain) was eliminated. They are looking at and testing things I had researched, and wanted done. I didn't even have to bring it up. They were on it. (!)

Katie's therapies had actually started our first day there. They explained to us then that one of the ways to help reduce Katie's nerve pain was to desensitize those areas, especially her hands and feet. This meant instead of avoiding those painful areas (that even the lightest touch would make her cry out), they would be doing deep touch massage (pressing down hard) and making her stand -- fully soled, not tip-toes -- on her feet. This treatment works and Katie was asked to trust in it, even though it would be very painful and hard to do. It would get easier and get less painful over time. This "phase 1" would like climbing up a mountain -- each foothold and handhold would be hard, take great strength, and be intense -- but she would be climbing toward something amazing and all of it would be completely worth it!

The first day of treatment began with Katie being strapped into a standing machine. This contraption kept her safe from fainting and falling and it slowly raised her to a standing position. She stood upright for the first time in about a year, and on very painful feet. They distracted her by playing a game while she stood. Katie was pretty tired that night from her therapies and also our "flood". :-)

Day two moved on from that: Katie practiced balance by standing on a half circle ball. She was distracted from the intense pain by playing a game at the same time.  Her hands were asked to pick things up, manipulate game pieces, and she endured deep touch massage. This continued in her next session that afternoon.  Katie reported that the firmer touch, while very painful, hurt less than the light touch; interesting! She was also beginning to be taught tools to help her body control the intensity of her pain.

While Katie was busy at her multiple therapies, "Team Katie" (the nurse-practitioner (CC), the case manager (WW), the social worker (A) and others) came and talked with me. There was a new plan: they would ask me to not stay overnights with Katie in her room. They needed Katie to achieve her goals of functionality and independence and be ultra-super-focused on it; to do that they wanted her to re-learn to rely on herself and build trusting relationships with the therapists. Having Mom always available in the room is a comfort and a support, but would slow down this focus. I'm a big-picture gal -- my bottom line is that I want my Katie to get her life back and be successful. This was going to help that, so I agreed, of course. I trust "Team Katie" and this wonderful program here at PCMC. I knew it would be hard on Katie, so I quickly packed up all my things while she was away and re-arranged her room and things before she got back. My brain knew this was the right and best thing, but my mom-heart did hurt while I packed.

When Katie returned to the room, we had a visit with CC and had a great talk about long-term and short term goals for Katie. Dad and Alex arrived after that -- a real treat for Katie. She was tired and filled with pain from a first full day of therapies; her body had been asked to do things it hadn't done in over a year! Her nerve pain began to increase more and more as the evening went on, even returning to her face. Add to this, that there was no way around telling her that I would be going home and not staying nights with her. The timing was terrible. It was a very hard moment for her. Her dad and I have always been right there, supporting her through the worst moments, and here we were leaving. The anxiety made the pain worse. What a rough night.

But to show you that the Lord never leaves us alone -- an LDS representative came to Katie's room just at this moment to let us know about LDS resources available at PCMC and the Sunday meeting. He could see her distress and emotion and said maybe he would chat with us another time, but was there anything he could do? We all looked at each other and asked him to help participate in blessing Katie. He did, and the nerve pain instantly disappeared from her face! While still in great pain, she did not feel so panicky. How neat is that? We thanked him as he left, and the sweet nurses came by to help Katie remember her tools and gave her something to help her sleep.

Goodbye hugs were long, and assurances were made that everything was okay, and we would see her after her "work day" tomorrow. She was brave.

I thought I would cry on the way home, but instead, John and I talked the entire time -- excited and marveling at at everything that was planned for, and already being done for, our daughter. We were filled with hope and relief. I imagine if you were looking down that night, you would have seen our little car, filled with light, wending its way home in the night.

Flood

Day #1 at Primary Children's Medical Center. 

We arrived Monday -- a beautiful warm Spring morning, to smiles and warm welcomes from nurses and WW, our rehab case manager who had worked with me so patiently and worked so hard to get Katie up there early. Katie's private, corner room was all ready complete with a welcome sign on the wall. Her room is directly behind the nurses' station. If you peek out to the left of her window, you see the giant "U" on the mountain. (That's for the University of Utah for you out-of-towners...) If you had a really strong arm, you could probably hit the U if you threw a rock at it. PCMC is tucked up into the mountains here.

Katie got familiar with her room, while the day nurse gave us parents a tour of the floor and the resources and amenities available to the parents. Among them: a shower, ice/water machines, food and snacks, a resource center, and even a laundry! As we returned, Katie had her first visitor, a therapy dog named Molly, that was making the rounds to the children on the floor. Katie was a little anxious about what lay ahead for her, and a friendly, furry face helped to relax her and get her comfortable.

The next goal was to order some lunch for Katie, and then have Katie and I "move in". We had been told to expect a stay of two weeks.

These two small things took the rest of the afternoon to do. So began "the flood". One after the other, with probably only 5 -10 minutes between them, nurses, doctors and therapists met with us. They introduced themselves, heard Katie's story and her symptoms, and talked about what they would be helping her do. My head was spinning; I couldn't keep track of everyone and everybody. I couldn't take it all in. As you can see in the picture, Katie also started in with therapies. It didn't matter that it was our first day -- no time was going to be wasted.

The day nurse finally came in with a grumpy face and made it all stop for a minute so we could order some food up to the room, saying that Katie hadn't eaten all day! The last doctor/nurse/therapist came and visited with us as 5pm approached. We finally were able to get some food in Katie, unpack our things, and have Alex visit in the evening. It was after dark that I was finally able to eat something down in the cafe downstairs. What a day! Katie and I were exhausted and we both slept very well that night. When I woke up the next morning, it took a minute to remember where I was. I was here, at Primary Children's Medical Center, with my daughter, getting help. I laid there for a while, as Katie slept on. A polite little flood of tears came in the quiet of the morning, as I prayed to my Father in Heaven with a heart full and brimming over with gratitude and relief for this blessing.

A flood of visitors in our room that day. A flood of compassionate and expert help available to us. A flood of emotion. The word of the day is "FLOOD". :-)

Moving Forward

We felt pretty devastated when we got the news that the insurance denied Katie's case. The official reason they gave was they "didn't see that it would do any good." (!?) The head doctor of the pediatric rehabilitation argued with them, to no avail. WW, the rehab case manager, was on the phone with me a lot that day, helping me look at all options for Katie, the costs, and answering questions. Her compassion, patience, and taking time with me was a balm of Gilead on a very painful day. In fact, looking back, all those I called that day were angels to me, full of helpful insights, and tender feelings for our family and sorrow for another setback. Mary, Kelly, Mom -- thank you.

We have had heavy decisions to make in the past couple of days. We are following the old saying, "Pray as though no work will help, work as though no prayer will help." We have spent much time in prayer, seeking comfort, but also clarification on what to do now.  We have spent time researching and discussing remaining treatment options available to Katie, all the while, 'listening' with our hearts and souls on what feels right and praying for confirmation...

We have made that decision. We are moving forward. We are taking Katie up to Primary Children's Monday morning.

Katie must have care. There is too much suffering at this point, and her health is deteriorating. Getting her better nerve pain medications and teaching her ways to deal with this pain has to happen. Getting her body stronger is key to any kind of recovery. I am completely convinced that this physical therapy program is the best care available to my daughter. I am also convinced that now is the time that she must have it. I feel peace about these things. I have no idea what's coming next. I don't know what the next few weeks will bring.

We will move forward with faith.

Denied

Our insurance has denied Katie's treatment. I can't write any more right now. More later.

Ducks in a Row

We are back home after an early and intense morning. Katie was very symptomatic by the time we arrived at Primary Children's and the rehab room -- so, everyone got a pretty accurate view of what she's going through and what she deals with, symptom-wise, every day. Katie was seen by Dr. S-N and several other therapists that will be working with her. Katie's physical strength and stamina was assessed and there was quite a bit of visiting over what her health journey has been like so far, both physically and emotionally. We talked about her severe nerve pain: a more effective nerve pain medication than Gabapentin is being prescribed. (Thank heaven!!) And yes, they do want to admit her. It looks like Katie will be in good hands. They sent us home while they 'get the ducks in a row'... the bureaucratic fun of insurance pre-authorization. We expect to go back up Wednesday morning.

Katie slept the whole way home; no big surprise there!

So, between now and then? Rest and relaxation!! And we are gonna soak it up, too -- the hard work starts soon enough.

We are so thankful that this new chapter has finally begun for our girl.

Here We Go!

Several hours after writing my last post, the call from Primary Children's FINALLY came! YES!!! (insert happy dance here) After months of waiting, I can't think of a better quote to illustrate how we feel:

We go in on Monday and several doctors and therapists will assess Katie's condition and decide whether or not she will be admitted for the week. Our daughter has a long, hard journey in front of her as we try to get her stronger. But, as Katie said, "anything is better than waiting!", and I agree. We are ready to start this journey. Her mom and dad, Alex, and so many others will be with her every step of the way.

Thanks for all your powerful prayers, help and support -- we are getting in earlier than scheduled  -- and you helped bring that about. Thank you!

Here we go...

picture credit

Delays, Delays...

I have struggled to get to the keyboard and update here; sorry for the lack of posts. My hands have been busy helping Katie through this month -- perhaps I could order another pair of hands on Amazon -- that's not the first time that thought crossed my mind! Then again, they would never be able to keep them in stock; it would be the favorite item of ANY mom out there! LOL I will snatch a few minutes and try to catch up.

Thanks to Katie's aunt, we now have Katie's frightening acid reflux episodes more in hand. We have learned about foods to avoid, and she has gone from 2-4 episodes a day to just one every few days. What a blessing and relief that is. She still struggles with acid reflux during the day, especially after eating, but at least she is not fighting to breathe.

We continue to wait to get Katie to Primary Children's Medical Center. We were so very hopeful for a call last Tuesday telling us to bring her up, but instead the news was "there were no beds available". No room at the inn, so to speak. "Maybe next week." There have been so many "maybe next week"s and delays due to insurance issues, and delays with doctors leaving town. (By the way, Dr. S-N will be leaving town again here during the end of April: more delays.) Delays delays!!!! If Katie's mascot is a pink zebra, maybe mine will be Marvin Martian from the old Bugs Bunny cartoons... :-P 

All the while, Katie deals with unbearable nerve pain and a page-long list full of symptoms on top of that. It is so hard to watch her suffer while we wait. It is one day at a time, and very often one hour at a time. We keep up with her ridiculously ineffective pain medication (Tylenol and Aleve; really?!) and try to distract her the best we can. Katie has been dealing with nerve pain since last August. Last AUGUST. Hearing of another delay, and thinking of all that Katie is going through, my mom-heart broke while on the phone with the rehab manager, and tears flowed freely for most of our phone conversation.

The plan is to try to get her in "next week", and admit her to Primary Children's for a week. Perhaps because of my tears, they arranged to get Katie on Gabapentin right away; a nerve pain medicine.  We started her that day. It takes 1-3 days to build up in your system before you see relief. We are on day 2. No relief yet, but lots of side effects. Drowsiness and dizziness are not the worst side effects out there, but when you are fatigued all the time, and always dizzy and light-headed already, it's not good -- it is making those symptoms much worse and hard to bear; it's scary for her. Katie insists on sticking with it, though, to see if the Gabapentin will bring her some relief.

And so we wait to see on that as well.

I am beginning to loathe the word "wait."

Every Day is a Good Day

 

Every day is a good day, no matter what.

A Quick Update

Unfortunately, we weren't able to get Katie to the U before Spring Break, which was all last week. We were able to speak with a manager at the Rehab department at the U before the break, and communicated Katie's needs and the urgency we feel to get her in to someone that has the clout to do something about it. There is a more urgent need: lately, her nerve pain has worsened and spread to the point where it is hard to endure the day. Also, a new symptom of not being able to breathe has set in. We think it's acid reflux related, but these episodes that just come and go are frightening -- not just for Katie but for her parents! Katie's never had acid reflux in her life, and we've only seen this in the past couple of weeks. Weird. It's a combination of things coming up, and her throat constricting completely closed. No air can pass through. We are sticking pretty close to our girl these days, as you can imagine.

Her official appointment with Dr. S-N has been moved up to early May (from June), which is a blessing we'll be thankful for, but we're hopeful that our phone call last week will move the needle on getting Katie seen even sooner than that. We feel very good about the program they have outlined for her. We just have to get her in and get it started!

She is hanging in there, thanks to your prayers and well-wishes and sweet gestures. We are getting pretty good at distractions; and Katie's sweetheart, Alex, comes often to cheer her up. Hearing Katie laughing with him is sweet music to our ears. He's awesome. How lucky are we to have the Gospel and all of you pulling for her? We are blessed. Please keep up the prayers and good thoughts. We are almost there.

A Prayer Request

Dear Family and Friends,

We would like to ask you to join our family in praying for our daughter, Katie. The good news to report is that a special and specific rehab doctor at Primary Children's Hospital and physical therapy plan at the University of Utah are being put into place to help Katie. This will help her get stronger and bring some relief from the intense pain and severe symptoms she faces every day. We are so grateful for this blessing and look forward to its beginning. The bad news is just that -- beginning it! Although we are on a high priority waiting list for this rehab doctor (whose first available calendar appointment was in June), we have not been able to get in to see her. This doctor will be leaving and unavailable for at least 2 weeks (or more?) in April; which means Katie would have to wait, in her current state, until the doctor was back to even hope to be called in, get an appointment and begin medical treatment.

We are praying for a miracle that Katie will be called in before this doctor leaves, which is now just a few short days away. If it's not meant to be, we are praying that our Katie will be given the strength, sustaining and faith she will need to make it through the extra weeks she will be asked to endure. A hope that the Lord could lift the full weight of this burden from her shoulders during that time.

We love you and thank you with our whole hearts for the prayers, love, kindness, support and real help that you have given our family during this hard time. Katie has been so touched by these Christ-like gestures from you. Our hearts also hurt with the knowledge of many others we love are bearing heavy burdens as well. You are in our thoughts and prayers every day.

Thanks again for all you do!

If you would like to subscribe to this blog by email, please click on the comments area (find this at the end of a post) and click on "subscribe by email"... :-)

Her Story, Part Two

Fresh off her triumph of graduation, and accomplishing all the goals she had set, Katie enjoyed her first summer after high school. After about a month, Katie's health began to really nosedive. She began to have many Dysautonomia symptoms we had not seen before, and at a new level. The hotter it got outside, the worse she did. Nerve pain, chest pains, difficultly swallowing, eating, and eventually an inability to stand or walk at all without blacking out. She was now forced to be in a wheelchair. From time to time, her symptoms would be alarming enough to take us to the ER. There were terribly hard days during this summer. Her Dad and I became caregivers, helping Katie through each day. Despite these setbacks, she continued to keep having a life. She worked part time at a job she loved, and pushed through the bad days. She looked forward to fun dates with her sweetheart, who has loved her through think and thin.  Her parents continued fighting insurance battles and tried to get Katie the medical help she so needed. We were finally connected to the Faint and Fall Clinic at the University of Utah, and glory be! There were doctors there that knew what Dysautonomia was! What a relief! But it also meant more tests, and appointments...

Months passed. As a family we pulled together, trying to make each day the best it could be. During a train trip north to visit family during Christmas break, we were stranded on a platform in sub-freezing temperatures. The train had broken down and ended up being almost an hour late. This exposure was poison to Katie's body, and her Dysautonomia symptoms flared to an unbearable level. Each day since has been terrible for her. Katie is in great pain all the time, and suffice it to say that every symptom she experiences (and there are many) is intense and very severe now. She needs our help in completing even the simplest things. Insurance problems continued until just recently. Despite new appointments, we have not found much relief or help for her medically. We are hoping things will soon change.

I know better than anyone else how hard each day is for her. Incredibly, Katie continues to be upbeat and happy and look for the joy in each day, and the blessings in her life. I ask myself if I could be like that carrying all that she does...the answer is no.

She is my hero.

Her Story, Part One

This is the story of my hero. My daughter Katie is a bright person. Bright in intelligence, imagination and in heart. She is a fun, sweet, upbeat person with many talents, which include writing and poetry. She is also strong and determined, something that has helped her excel in her goals and activities, and also through her health problems. We didn't know it then, but this all began with a sledding accident that Katie was in during her junior high years. Through hard work on her part, she recovered from that serious accident, but it left its mark on her body. She later needed major surgery to repair damage from that accident, and again, fought to recover. Looking back at that time, we see now that her stamina was less than before...that standing for a long time was getting harder and harder...

In the meantime, life goes on, and Katie -- now in her high school years -- got involved with with her school's Color Guard and performed with the Band which performs (and wins) at an elite level, nationwide. Her life was full -- not just with her grades and classes, but also competitions, endless practices and trips. She truly enjoyed dancing with the Color Guard -- and when Band season was over with, she continued on with Winterguard. Another organization that excelled in competition. She loved it, and the true blue friends she made during that time.

Nearing the end of her junior year, she had a few more health issues, but nothing that a little down time and some determination could take care of. She successfully finished the Winterguard season and her junior year classes. As the summer Band practices started up again, Katie began fainting at many of the practices. We chalked it up to a teenager not hydrating enough during those demanding practices. After all, she looked fine!

As her senior year started, Katie began fainting in class; air-conditioned and cool places where dehydration should not have been a problem! 

This got her parents' attention, and just as we started to look into why this was happening, Katie had an accident at a Band competition. As they finished their show, Katie blacked out. A good friend barely caught her before she hit the ground, and they quickly got her off the field. They had trouble keeping Katie conscious on the sidelines and she was rushed home -- and we rushed Katie to the ER. So began months and months of testing, hospitals, and procedures. Katie struggled to recover; she lost her ability to read and write and remember. This was heartbreaking for Katie, and it also destroyed her senior year.  We discovered later that she suffered a brain injury that day. We also figured out why she had been fainting so much; Katie suffered from a condition called Dysautonomia, probably left over from the trauma her body received during her sledding accident years ago. Her low blood pressure had caused her to pass out at the Band practices and at that particular competition that injured her.

I now have a soft spot in my heart for those that suffer from "invisible illnesses". Everything looks fine and healthy on the outside, but there is pain, discomfort and sometimes real suffering on the inside. Katie had to deal with Dysautonomia and a brain injury her senior year. While most were supportive and helpful, especially one friend in particular, there were those that felt she was 'making it up' and causing drama. After all, one minute she was acting normal and fine, and the next, she was really ill. She was even yelled at by a respected leader in front of the entire group once. Those were hard days.

The rest of her Senior year was filled with trying to rehabilitate enough to graduate with her class. Which she did -- with honors! Her brain recovered at a remarkable pace with the help of a wonderful rehab therapist. Through her strength and determination, she also took part in the top Winterguard team, helping them win first place in their division. College and a scholarship waited for her just around the corner, and she landed a great job editing in an office.  Life, despite all Katie's challenges, looked rosy.

To be continued in Part Two...

Why a Zebra? .... and um, Pink?

This is a blog about Katie and her health stuff. So...what's up with the zebra?

And one that's pink?!

During one of Katie's ER visits, the doctor visited with me about Katie's condition.  Dr. B explained that doctors, and even specialists, are trained to look for the common and known medical conditions. They see a set of symptoms and think, "oh that looks like " _____".  And most of the time, they're right, and the patients are treated successfully. He explained it like this: "When they hear hoofbeats, they automatically think "horse."

Dr. B continued: "But sometimes hoofbeats can mean "zebra" -- and your daughter is a zebra. Your daughter needs doctors who, when they hear hoofbeats, will think zebra." That conversation and Dr. B's referrals led us to the University of Utah, where Katie is currently being treated at the Faint and Fall Clinic. They know about Dysautonomia  and treatment options for our girl there -- and what a relief that is! That has not always been the case in her medical journey, as it is with most Dysautonomia patients. But that's a post for another time.

Katie and I have kind of adopted the zebra as our mascot in all this. Now you know why. I even bought her a zebra shirt to wear to some of her doctor visits! And...why a pink zebra?

Well, if you know Katie, her nature is upbeat, happy and fun. A Type 1, if you know what that means. So, if our girl is a zebra, that zebra would have fun pink stripes! Katie is the Pink Zebra. Hence the name of the blog. Make no mistake -- Katie is going through a heartbreaking, incredibly painful, hard time right now. She takes one day at a time, sometimes one moment at a time. I am sure we will be updating you on some very hard days in the future. In spite of all that, we picked a fun, happy look to the blog and a fun name to honor Katie; and for the way she faces each day with courage and grace and a happy attitude. We are so proud of her.

We so appreciate the love, support, concern, TLC, and prayers we have received from many of you. We are so blessed.

Dysautonomia 101

 
First things first. Katie suffers from a chronic condition called Dysautonomia. I know. Dys-auto-what? That's what I said, too. Here's a basic introduction:

Dysautonomia is a pretty big word. It is pronounced dis-auto-nome-eia.

Dysautonomia is a dysfunction of your autonomic nervous system (ANS). This means that the automatic things our bodies usually do may not be happening so "automatically." Obviously, the autonomic nervous system is pretty important to our bodies. It controls things like heart rate, blood pressure, digestion, body temperature regulation, endocrine system, and pupil dilation and so much more. Most people are unaware of their autonomic nervous system working in its usual "involuntary" manner. It controls the body's systems "automatically" and thus healthy people usually take it for granted. When you have a dysfunction of this system you discover very rapidly that it is nothing to take for granted!

It is super-challenging to live with. Imagine feeling like you have the full out flu, or how you would feel if you just got through running a marathon. Pretty bad, huh? That's just a regular day for someone with dysautonomia. This condition is hard to explain. I usually fall back to drawing a parallel to a control tower in an airport. Imagine if the signals coming from the control tower were all WRONG. Can you imagine the chaos at that airport? Planes would crash. Luggage would be lost, people stranded, and on and on. That is what's happening in Katie's body. Almost every system that is governed by her ANS is getting wrong signals. It's causing serious chaos in Katie's body. And it's all on the inside. On the outside, she looks normal.

Here's an excerpt from a wonderful site: the Dysautonomia Youth Network of America, Inc:

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. To the casual observer, the dysautonomia patient can appear to be healthy. The manifestations of the conditions are occurring internally, and although the symptoms are quantifiable and verifiable medically they are not visible on the outside (people cannot see fast heart rates, blood pressure changes, dizziness, migraines, stomach pain etc.). Symptoms of dysautonomia can be unpredictable, may come and go, appear in any combination, and usually vary in severity (wax and wane). Some symptoms seem to occur in intense phases.

Patients often become more symptomatic after a stressor or physical activity (which can lead to chronic avoidance of physical activity contributing to additional decline). Symptoms can occasionally be severe enough that patients may require consideration for placement in full or part time homebound teaching programs for health impaired students; others will be able to attend school, often with modifications in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with. It is essential that school systems make every possible effort to help these students remain in school and to keep homebound students connected to their peers.

Since patients afflicted with dysautonomia are usually normal in appearance, it can be a hard condition for laypeople to understand. Even the general physician sometimes misses the clues leading to a proper diagnosis. The symptoms are often difficult for the very young patient to verbalize and the conditions are not always promptly recognized. Traditionally, cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia patients. Sometimes neurologists and other specialists get involved as well. Families often find themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment.

The financial burden placed upon these families is often significant. The emotional toll and initial heartache can be devastating for everyone involved. Such an illness has a rippling effect on the entire family. Chronic illness counseling is often recommended to help the patients and their families deal with the impact of the conditions on their lives.

Symptoms of dysautonomia may include:

Orthostatic Intolerance (inability to remain upright)
Dizziness
Syncope (fainting/near fainting)
Tachycardia (fast heart rate)
Bradycardia (slow heart rate)
Palpitations
Chest Discomfort
Low Blood Pressure
Lightheadedness
Gastrointestinal Problems
Excessive Fatigue
Exercise Intolerance
Nausea
Visual Disturbances
Weakness
Shortness of Breath
Mood Swings
Anxiety
Vertigo
Migraines
Tremulousness
Noise/light sensitivity
Insomnia
Frequent Urination
Temperature Regulation Problems
Brain fog/forgetfulness
Inability to concentrate
Difficulty with recall
Appetite Disturbance
Hypersensitivity to sensory stimulation

Depending on the day, Katie deals with most of these symptoms. To keep this entry from getting too long, let me include a link to treatment options and prognosis: click here. It's interesting to note that over 1 million Americans suffer with this condition; a condition that is just now beginning to be understood and studied.  Click here to find out why you've never heard of Dysautonomia...

To learn more about this condition, please google "Dysautonomia", or feel free to leave questions in your comments!

Hello

Welcome to the little blog that will help keep family and friends updated on the latest "ups and downs" (literally!) of our daughter's medical condition, which is called Dysautonomia. Our family is blessed to have many that worry and pray for our girl, and this is the best way to 'get the word out' on what's going on with our Katie.

So, what the heck is Dysautonomia? Why did we pick "Pink Zebra" for the blog name? And of course, what's the latest? Stay tuned.