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?

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!

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. ♥

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."