One Year

Dear Family & Friends,

I told myself that I wasn't going to even acknowledge this day. As it approached, chances were that I wouldn't even know what day it was, as I usually pay little attention to the date these days anyway. Allie expressed to me her anxiety as it came close. I assured her that it was nothing more than a meaningless measure of time. If we have to think of that day then we will think of it as the day we could have lost you and didn't.

That day one year ago today is forever burned into my memory. From the first call. The disbelief again and again as people told me things that could not be possible. That I did not want to hear. The pain. The fear. Then the joy when I walked into a hospital room whispered my daughter's name and watched as she opened her eyes and looked at me. Sure she was scared beyond belief. She looked horrible. She was barely recognizable. But it was Allie that looked back at me and I knew at that moment that she was going to, against all odds, survive. And survive she did.

There is no way that any of us could have possibly anticipated or prepared for anything like this ever happening. Coming from a large family, we have always felt very fortunate that all our kids were as healthy, happy, smart and as beautiful as they all are. You prepare for your kids going away to college, you think about how you will feel when you find yourself with empty nest syndrome you even prepare for earthquakes. You do not prepare for paralysis.

This past year, the first 12 months of this journey, have been filled with a stronger mix of emotions that I could have ever imagined experiencing. Everything in our lives has indeed changed forever. It has been a constant roller coaster ride of frightful as well as uplifting turns and bumps. Because of all of you, we have made it. Allie has had the love and support of her family, friends and the whole community (close and extended). So, in spite of all the hell and torture she has had to endure both physically and emotionally, she has never given up. I honestly don't know how anyone less fortunate they we have been, gets through something like this. Thank you all so so much!

Since my last post Allie has been making great progress in getting out more and planning for her immediate future. We took a trip over to Morgan Hill to visit with Connor and his family. Jordan came along to help hold Al's head over bumps and turns. Connor, is not only in a wheelchair but like Allie, also dependent on a ventilator. His injury was a result of a diving/swimming accident at camp. He and Allie are very close in age and he has been a great source of comfort and inspiration and Allie is very fond of him. We first met Connor and his family when they visited us at Valley Med and since, they've visited here at our home a couple of times and met us in SV for sushi dinner. The more I get to know Connor and his mom and dad, the more I like them. I am very thankful for their friendship as we share day to day trials and fears that most parents could never understand. We also enjoyed a visit with Jerry and Katie last month. It's the first time that Allie and Jerry have seen each other since their accidents. Having gone to the same school but, having been in different grades and traveling in different crowds they never knew each other much. The visit went really great and we look forward to more get-togethers. Jerry brought his computer set-up for Al to see. She's also seen Connor at work on his, so she now has two to compare. She actually had an opportunity to use Jerry's and caught on very quickly. We are in the process of getting her a set-up now, thanks to a generous donation from Marquerite. I sent a letter to Apple in hopes of their donating a computer but never heard back. There is a possibility of having her old laptop fixed and so I am pursuing that today. She is now more than ever, very eager to get online. That same day, while Jerry was here we had a visit from Levi and his dad, Bill. Levi has spent the last ten years in a wheelchair as a result of a broken neck. He is a great source of information and keeps in great shape with the use of a specially equipped bike (unfortunately very expensive). One of the things that bothers Allie most of all is the loss of muscle as a result of no real exercise. We can give her range of motion to keep her joints from locking up but, we can do nothing to maintain or develop muscle. Allie's cousin Latasha visited for a day and night recently and joined Allie, Ashley, Tanner, Vince & Daniel for a picnic in the park. Al even made it to watch one of Adam's Lacrosse games. It was a bit frustrating for her though since she can't move her head side to side to watch the action.

As it seems is the case for Allie more often than not, with steps forward so come those backward. A couple of weeks ago Al went in for a check-up with her ENT. We were very excited to find out that he was able to acquire the smaller trach that we hoped would allow Allie to voice. The trach went in and at first Allie was able to have enough of a leak to have a bit more than a whisper. Going home we all hoped that over the next couple of days the leak would increase and she'd be talking. As the night went on things rapidly began going in the other direction. Her whisper became quieter and her peak pressures (the amount required to fill her lungs to the set capacity on the vent) began rising. By morning it was very difficult for her to breathe. We made some adjustments on her vent and called her doc. To make matters worse I had broken one of my own rules and allowed such a big change to take place on a Friday. It was Saturday morning and her doctor was out of town. We got one of his associates on the phone and since it was a Saturday our choices were to bring her to the ER or change the trach back to the larger size ourselves. Trach changes are done at home all the time and it is a relatively safe procedure. Allie opted for us to change her trach. We've seen it done several times and she would agree to almost anything to avoid going to the hospital. So, with the doc on the phone to walk me through it and for moral support, we got started. Ron was right there with me and we felt fairly confident. At some point during the procedure Kerry came so she was there with us also. I removed the trach and inserted the new one but, it would not go all the way in. I asked the doctor how much resistance should I expect. She said there would be some and that I should go ahead and push it in. It remained sticking out of her stoma about one centimeter even with the gentle pressure. I switched back and gave Allie a few breaths. We tried again. It would not go in and granted this was my first time doing this but, the resistance seemed to be too much and I was not willing to push any harder to get it seated. Allie said she was going to pass out. We told her that her sat was 98 not to worry. I am not positive of all the details. One second she was okay and the next she was passed out.

Her face immediately drained of color her face and her eyes rolled back and then fixed straight ahead in a blank stare. Okay, I know you have heard this story before but the times it happened we were in the hospital. Code blue could be called and within seconds the room would fill with trained people that could help bring her back. They had the tools and the training. Scary beyond belief but at least we knew she had the best chance possible. This time, we were at home alone. I pulled the new trach out and Ron inserted the smaller one. It went in easily. We began giving her breaths with the ambu bag. There was no change. I saw Kerry standing at the end of Al's bed. Her horrified expression and eyes full of tears. For a flash of a second, I thought I had killed my daughter. Ron told me no way we would get her back. At some point, during the trach change I'm not sure when, Kath had showed up to do ROM. She called 911. It was a good three or four minutes before we began seeing color come back into Allie's face. Once again our buddies at the Felton Fire showed up. Allie's heart rate was terribly slow but she was awake and talking. She refused to go in an ambulance and we headed over the hill to Kaiser ER. Kerry came along to help. The ENT doc promised to meet us there. After talking with the doctors what we think happened to cause her to pass out is something called vagaling. You may remember this happened to Allie before when she was at Valley Med. The vagus nerve is the nerve of the muscle in the throat and larynx. Many things can stimulate this nerve which causes the heart-rate to slow to a dangerous rate or even stop.

After a frustrating 1/2 hour or so in the ER where I managed to anger at least two doctors and one nurse that were convinced that Allie had a lung issue and were eager to administer steroids, we were able to see the doctor that had been on the phone with us so was familiar with what had happened. She tried to put the size 6 trach in and met with the same resistance. To make a long story short...Al was admitted into ICU. Her doctor was contacted and he asked that as long as Allie remained stable that nothing be done until his return. Monday she went into the OR. The granulation was back. In just the short time that the smaller size trach was in, her trachea/airway had almost closed. Allie did really well through the whole ordeal. She told me sadly that she thinks she's getting use to it. We came home Tuesday and she's doing great.

When I began writing this post Allie was fast asleep. She's awake and by the look on her face just now when I walked in the room to check on her, she knows what day it is. Her face was a mask of grief covered in tears. I don't want to get up today and I don't want to see anyone she told me.

I wanted to tell you more about the positive. The growing relationships Allie has with her Uncle Doug, Auntie Vicky, Auntie Sandi and Auntie Pam. The friends that are always here for us both and make the biggest differences in our days. How Scotty and Samantha loaded her up in the van for an outing the other day without my assistance. About our Easter. But, I don't have time. I need to go lay down with my daughter and promise her as many times as it takes, that things will get better. \\

Ahh there's Jordan's jeep just pulling in to the front. She's been with Allie every step of the way. We will get her through this day.

Thanks for listening. Thanks for the love and encouragement. Thanks for the prayers for my baby girl. Thank you. You make the difference.


Love, Peace & Happiness,
Deborah

ps: To Laureen & Sharon - the flowers are beautiful Al loves them and they brought big smiles