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.