Back Upstairs Again

Hi Everyone,

First an update on the good news...the construction at the house is progressing well. And by the way...........I have no idea how we would be making these changes if it weren't for the fundraiser! Ron with the help of family and friends has Allie's new room and bathroom downstairs framed in. They are waiting on me to get some tile samples to run by Allie for approval. I planned to go out Friday to Dal Tile (they have generously offered to donate everything she needs) but Allie had a visitor and I ended up staying for the visit and never made it to the shop.

Allie's visitor, Ian is one year post injury. He is ventilator dependent and came by to meet Allie. It was an emotional visit for all. Turns out we have actually met Ian as he was a friend of our daughter Anjel. He use to live in S.C. but moved to Washington after his accident and was out here for a wedding. Although he continues to struggle physically and emotionally with his injury on a daily basis, we were thrilled to see that he is able to breathe on his own for up to an hour at a time.

Last Saturday Allie and I were out on the patio reading. It was a beautiful day and Allie was getting a break from her pretty busy schedule. Allie's trach had been changed the day before (never make major changes in a hospital on a Friday) to a different kind (I'll spare the details of why). Allie did not like the feel of the trach tube and since the ventilator settings hadn't been adjusted the darn thing was constantly alarming which is a very loud and piercing sound. Also, disconcerting since the alarm is meant to let you know there is something wrong. However, everyone kept assuring us that things were fine.

Allie's Aunt Pam came by for a visit and then Dad showed up. The alarm kept going off so we decided we'd better get back inside. While Allie's nurse helped us to bring up any secretions that Allie might be having, all of a sudden Allie turned grey, and passed out. Once again I stared into my baby girl's unnaturally colored face with her eyes fixed open, frozen, in a blank stare. While we bagged her she was quickly moved to her bed and her head was lowered. Code Blue was called. Something was different about the episode this time. I didn't think it was a mucous plug blocking her airways. The room filled with people. This time when Allie's color finally came back, she didn't. Allie was unresponsive. She was given a shot to minimize damage in the event she was having a seizure (difficult to see in a paralyzed person in a halo). Her pulse was barely there. Her dad and I called her name and tried to get her to acknowledge us. More than ten minutes or so passed and we thought (hoped and prayed) she was trying to respond but maybe she was just too tired or in shock and couldn't. Her eyes and mouth were moving a little. Allie couldn't talk or focus and really didn't look at us. Her vest was opened and she was given an EKG. We went with her while she had a CT Scan of her neck and head. By this time she was asleep from the med. she had been given for the possible seizure, so we knew nothing of her condition. Every thing had been going so good. But once again the state of our world was altered in a second.

Back up in her room in the Trauma Center, Ron and I waited for her to wake up and talk to us. I got a strong feeling from those around us that they were prepared for the worst. Her pupil response was at best sluggish in one eye and not responding in the other. Sometime in the early am Allie woke up and asked where was she and why wasn't she in her regular room. We answered her questions and she went back to sleep. We were elated. She was okay. She woke again and asked the same thing. That happened a few times and we began to worry again. Late that morning slowly but surely Allie began to be herself again. She had an EEG later and the test was negative for seizure or any negative brain wave activity. There are a couple of possibilites of what caused Allie's episode but we will never know for certain. Such are the complexities of a spinal cord injury.

Allie has been struggling with some blood pressure issues and a couple episodes of something called Autonomic Dysreflexia which is life threatening and can be triggered by something as simple as an overfilled bladder or an irritant in her shoe. She passed out again on Tuesday for a minute, so we are still up in RTC. Hopefully we will be back downstairs by Tuesday or so.

When Allie is not in terrible pain or anxious about being short of breath or having fluctuating blood pressure her mood is amazingly good. She does have what her Dad and I refer to as her "bewitching hour" when it seems for a couple of hours in the early evening she is anxious, inconsolable and it is impossible to get her comfortable. In spite of this I've seen a huge change come over Allie. She is participating more and more in her care. She is learning when her pressure is low and when it is high. She knows when to tell us to check her pressure or to coughalate or bag her because she is not getting enough air. She is getting along better with her nurses and other caregivers although Allie being Allie, the helplessness and lack of control I think is even more difficult for her than it might be for most. Still while her strong natural ability/need for directing can be at times frustrating for us all, this natural trait and skill will ultimately be to her advantage. She listens to her Doctors (most of the time) and asks many questions. She is getting an education in her body, people and life that no college could ever offer.

Allie misses her friends and misses her old life terribly. She continues to say she is not depressed but she is sad and sometimes questions the value in living this way. We tell her it will get better. Sometimes she'll just roll her eyes at me and say yea that's what you told me yesterday and then look what happened. I have no argument for that. But when we are lucky enough to see her smile it is as bright as it has ever been.

In spite of the ups and downs I know Allie is getting better and I look forward to getting back to our home in the Valley. The one common thing I hear from other families like Jerry, Connor and Ian's is that it gets better when you are home. I like to think that Allie is having her scares now, to get them all out of the way.

However, I am not totally dense and realize more each day how complicated an injury Allie has.

For the first time in a very long time I am now a stay-at-home mom. Well, I will be when I get home anyway. My boss has left the door open for me and even offered opportunites for me to stay in contact with my accounts and work from home. Right now my place is with my daughter with no other distractions. I feel at peace with that decision. Fortunately, Ron has work for the next month or so. While our lives may have forever changed, with everyone's help our family can do this and will. Allie will continuously recover and meantime we will all find an inner peace of a new kind, in our new life.

From 3:00 am to 4:30 am Allie was in distress over her feeling of not getting enough breath. I continue to ask that she be given back the gift of breathing on her own asap.

Thank you for listening and for all the love and support. Through this thanks to you all, there has never been a second where Ron and I have felt totally alone.


Love, Peace & Happiness,
Deborah