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.