Dear Family & Friends,
Your daughter is a very sick girl....she has broken at least one vertebra in her neck, probably more...she has been unconscious since arriving....it does not look good....one of your daughter's vertebral arteries has been damaged beyond repair and unless we can stop the bleeding as soon as possible, your daughter will not make it....your daughter is paralyzed from the chin down....your daughter is unable to breathe on her own and is dependent on a ventilator....
The first few days after Allie's accident was truly the worst nightmare. To be honest, I have never even imagined anything as horrible happening to someone I love so much. And although we have had major ups and downs since then, I now have another string of just a few words that will forever be burned into that place in my heart and mind that come back to haunt me on a regular basis.
In my last post, I touched on some breathing issues that Allie was having. Unlike the trachea problems she's had in the past this new problem resembled asthma attacks.
We did our best to remove whatever might be triggering the episodes. We had an enhaler. We changed lotion, soap, laundry detergent, removed all feathers, flowers, down and anything we thought might harbor dust from her room. I began researching room filters.
The episodes would come and go. Some days she would be fine and some she'd have an "attack" two or three times in a day. One night the wheezing began and we could do nothing to eleviate it. It wasn't going away. Her chest pain was terrible and we couldn't properly vent her. It became increasingly more difficult for her to breathe in, and exhale. We called for an ambulance. While dad, Auntie Vicky and I took turns staying with Al and getting ready for yet another trip to the hospital, she passed out. When she "came to" shortly before the ambulance arrived she was pretty unaware of her surroundings and certainly not herself but her color was good and although she was confused, I could tell she was okay. Adam, Samantha and Ashley had all heard about the 911 call and had arrived at the house to see Allie briefly and tell her they loved her, as we wheeled her into the ambulance. During the ride to the hospital she told me she was going to pass out. While I assured her she was fine and to please just relax I saw her face freeze and drain of all color. I heard the medic riding with us say "beginning CPR" as she responded immediately. Actually, it could have been "starting CPR" I'm really not sure. All I know is I had to push away the feeling of doom. I was so scared. One of our friends from Felton fire had come along with us and she also got busy. I continued to give Allie breaths from the ambu bag while the medic did for her what Allie's body couldn't. This time Allie's heart had completely stopped. They tell me it was four minutes. By the time we arrived at Dominican ER Allie's heart had begun beating on its own but Allie was out of it.
So began an agonizing 5 or 6 hours in the ER. Upon my insistence a Pulmonologist was called in to see her and if not for him, I don't think Al would have made it. Then to ICU while we waited for a bed to open at Kaiser Santa Clara. It was probably about 24 hours or so before we knew that other than a very badly bitten tongue and once again no memory from about five hours or so before the episode began, thanks to the CPR Allie received, Allie was still our Allie. So after another stay in the hospital where she received massive doses of steroids and antibiotics, the wheezing seemed to be gone.
The valley lost one of its long time and popular residents this year, Al Rudy, Samantha's grandpa. We had only been out of the hospital for a day and a half when Allie found out that morning that his memorial service was to take place in a couple of hours. She was determined to go be there for her friend and her family...."it's important mom". That morning I happened to have a stiff neck, and absolutely no energy and saw no way we could do all we had to do to be up and out of the house in time. Kath came by to do Allie's range of motion and called in Talley to help. Between the two of them...Talley massaged the biggest knots out of my neck so that I could hold my head upright and Kath started to get Al ready. While I got myself ready, Talley did Allie's hair and makeup. Thanks ladies. You made the impossible, possible! And thanks to Adam for going along with us to help out. The outing exhausted Allie, but she was so glad she had gone and I was incredibly proud of her. The way she can rally strength for friends or to do the right thing, never ceases to amaze me.
Thank you also to Deb Mattson (my long-time friend *look for her office on HWY 9 in Felton if you are interested in an awesome massage*) for making a housecall, the following day (on a Sunday no less) to continue working on the knots in my neck. Also, thank you to my brother Douglas for adjusting my neck and back. You'd think I'd be use to those ICU "bed chairs" by now, but that visit really took a toll on me!
To make yet another long story short our time at home didn't last. Allie's wheezing began again. Dad, Auntie Sandi and I took her in to see her Pulmonologist and he admitted her back into ICU that afternoon. He had been on vacation during her last stay and his approach to her treatment was different. Another five days and we were home once again. The new meds seem to be working.
Thankfully the last couple of weeks have been pretty uneventful. Mostly, Allie still spends her afternoons sitting outside on her deck enjoying the beautiful weather as much as she can until the sun moves away and she gets chilly. We have to wait all over again for all the approvals to go through for her therapy and since the first week of her online cabrillo class was spent in the hospital, she decided to drop it for now. The boredom sometimes I think is unbearable for her, but still much better than the "excitement" of the emergent health issues she seems to be unable to move away from.
We get out of the house as much as Allie is willing, but she continues to be sad and uncomfortable when we venture out. Most people are great, but some people cannot seem to help but stare. We did attend a Candle Lite Party hosted by our friends Denise and Bianca. It was a great time spent with friends and family and also a fundraiser for Allie. Thanks Denise for such a generous and thoughtful gift and thank you to all of you that attended.
I guess that's about all for now. I continue to be thankful for our beautiful comfortable home in "paradise". We know we have the best family and friends anyone could ever have. Regular visits from my brother and sisters mean so much to all of us and keep us going. Kerry, Kathy, Wendy, Susan & Tricia (among others) are always here for us helping with the practical, the fun times, as well as moral support. Thank you to Matt and Auntie Pam for their recent and very generous donations to Allie's trust. A giant thank you to my sisters (especially Auntie Vicky) for all the meals while we were in the hospital so that Ron and I could enjoy an occasional dinner break together, outside the room in the hospital courtyard. Thank you to all of you that continue to bring us those awesome meals (in spite of my insistence that you've already done more than enough).
A special thank you to my brother-in-law, Douglas for the new dishwasher!! I could have done without, but am so happy not to have to.
Please continue to pray for Allie's physical as well as emotional strength and recovery. It seems increasingly clear that it is critical for her to be able to experience some significant improvement in her condition soon, in order for her to have any peace of mind.
Hopefully, next post I will have some good news to share!!!!!!!!!
Love, Peace & Happiness,
Deborah
Allie
Thursday, September 9, 2010
Sunday, August 8, 2010
Transistions & Set-Backs
Hi Everyone,
When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.
My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?
We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.
Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.
Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".
While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.
This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.
Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.
We cannot fail with all of you behind us.
Love, Peace & Happiness,
Deborah
ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).
When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.
My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?
We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.
Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.
Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".
While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.
This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.
Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.
We cannot fail with all of you behind us.
Love, Peace & Happiness,
Deborah
ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).
Sunday, June 20, 2010
TMPRARY
Dear Family & Friends,
"Tmprary" that's what you'll read on the license plate of Allie's van. It may be considered an unnecessary expense to pay for a personalized plate, but somehow in this case, it seemed important for her to express not only her feelings about her current mode of transportation, but her current physical state. We've never considered Allie's condition to be permanent and still don't. I can tell you though as time goes on, I can see how easily it would be to go crazily discouraged when you hope and pray so hard and see such little, if any, improvement. A few weeks ago things seemed to me to be getting so tough around here, it almost seemed hopeless. The sadness and frustration was rising to a feverish pitch. Allie's pain had been especially bad for a few days straight. If she wasn't in terrible pain physically, she was increasingly bored and depressed as well. Adam was stressed registering and getting classes scheduled for college while taking finals and finishing up all he needed to do to graduate from high school. Ron was hobbling along best he could trying to do things around here and dealing with the disappointment of losing a couple of jobs because the people couldn't wait any longer for him to be over his injuries. So...I was feeling pretty close to my breaking point. Sometimes it doesn't take much to make you smile for days like the first time I saw a bird bathing in the beautiful ceramic bird bath my sister, Pam gave me for my birthday. But sometimes it doesn't take much to forget about the good stuff and get stuck focusing on the negative. How do people survive this? How can we live like this? This is too scary, too sad and too hard! Questions I have asked myself over and over. Something has got to get better. As often happens in life, (but unfortunately not always) just when you think you can't take it anymore something gets better. For us, this came in the form of a small but significant step toward independence for Allie. Her computer arrived fixed and like new. A couple days later the hardware and software we ordered arrived (thank you once again to Auntie Vicky & Marquerite for helping to make these things possible and to Uncle Doug for taking care of the external hard-drive).
Allie's first attempt to work her laptop ended with frustration and tears pretty quickly. Just the basic seemingly simple gesture of moving a cursor had become for her, a huge physical challenge. The system Allie has works with a camera mounted on the top of the screen. The camera tracks a "small paper dot" that sticks either to your forehead or glasses. It moves the cursor as you move. You use a sip and puff stick for right and left clicks. Because of Allie's limited head movement we've found the best place for the dot is on her chin. This is especially difficult. If you can, try and imagine keeping your chin still when you've finally got your cursor where you want it, but at the same time using your mouth to operate the sip and puff to click. I am happy to report though that the next couple of times she made remarkable progress (no big surprise knowing our girl). She's already been talking with friends, started a playlist for a new CD and even downloaded a ringtone for me. When she told me that the best part of working on the computer was the ability to finally do something by herself, I had to turn my head to hide my tears. Once again she makes me so proud and yet at the same time so ashamed. How dare I complain about my frustration with our situation when she continues to show such progress. Watching her tackle this latest challenge reminds me that while we may be missing out on some things that we once took for granted, that in ways never imagined, our new life gives us an opportunity to appreciate the "little" things that most let pass them by.
Adam is the fourth of our children to graduate from SLV High. Thank you Whitney for coming over in the morning to do Al's hair and help her get ready for the big event. It started at noon under a very hot June sun. Thank you, thank you, to the MacCallister's for sharing with us space under their easy-up. Without the shade I don't think Allie or Ron would have made it through. Thanks to Dennis for helping me get Al up the slope and across the lawn. Thanks to my son Alonzo for helping me get her back down the slope! They had a more accessible way to get to the festivities that did not include a slope, but we had parked as close to the tent as possible and so dealt with the slope instead of pushing her across more lawn than we had to, as it is a very bumpy ride for her. The ceremony was very nice and we all went out to the wharf afterwards to celebrate Adam's accomplishment.
Uncle Doug and I brought Allie for a trach change earlier this month. It went well and although there was a small amount of granulation present her docs were very pleased with the way her trachea looked. Al hates trach changes and it is a very stressful time for her. She did a great job though. She likes and trusts her ENT doctors and it gets a tiny bit easier each time.
Friday, Allie went back to Valley Medical for the first time. The minute we drove into the parking lot her stomach began to ache. Four extremely difficult months of her young life were spent here. Her whole life changed here. It was here that she was told she wouldn't walk or breathe on her own. She quickly pulled it together though and was really happy to see many of the wonderful people that had worked with her during her stay. Because Kaiser's rehab center is in Vallejo and really isn't as fully equipped for Al's needs, after many phone calls, discussions and emails, etc. she has approval to go to Valley for Occupational and Physical rehab. We aren't sure yet how many sessions she will get, but we will fight the good fight to get her the best and most we can. The occupational therapist talked with her about which power chair will be most appropriate for her, and will help her to get a much-needed shower chair as well. The consult with the physical therapist is on Monday. Our hopes are that they will work with her on developing some neck strength and Allie is really hoping to get a chance on the exercise equipment in the gym. More progress!
I want to send a special thank you to Tanner, Marguerite, Susan, and Samantha for helping with transfers. Thank you to my sister, Pam my brother-in-law, Rod and my nephews, Nick and Travis for all their work on the corral. Thank you to Ashley for helping Al pick out her new shades. Unlike you, I'm pretty sure I would have lost my patience after the 30th pair:)!
Thank you to all our friends and family that continue to be there for us in so many ways. Your meals, flowers, visits, prayers, love and support are incredible. Thank you to those of you that include us in your prayers even though we've never met. You are the best.
Love, Peace & Happiness,
Deborah
"Tmprary" that's what you'll read on the license plate of Allie's van. It may be considered an unnecessary expense to pay for a personalized plate, but somehow in this case, it seemed important for her to express not only her feelings about her current mode of transportation, but her current physical state. We've never considered Allie's condition to be permanent and still don't. I can tell you though as time goes on, I can see how easily it would be to go crazily discouraged when you hope and pray so hard and see such little, if any, improvement. A few weeks ago things seemed to me to be getting so tough around here, it almost seemed hopeless. The sadness and frustration was rising to a feverish pitch. Allie's pain had been especially bad for a few days straight. If she wasn't in terrible pain physically, she was increasingly bored and depressed as well. Adam was stressed registering and getting classes scheduled for college while taking finals and finishing up all he needed to do to graduate from high school. Ron was hobbling along best he could trying to do things around here and dealing with the disappointment of losing a couple of jobs because the people couldn't wait any longer for him to be over his injuries. So...I was feeling pretty close to my breaking point. Sometimes it doesn't take much to make you smile for days like the first time I saw a bird bathing in the beautiful ceramic bird bath my sister, Pam gave me for my birthday. But sometimes it doesn't take much to forget about the good stuff and get stuck focusing on the negative. How do people survive this? How can we live like this? This is too scary, too sad and too hard! Questions I have asked myself over and over. Something has got to get better. As often happens in life, (but unfortunately not always) just when you think you can't take it anymore something gets better. For us, this came in the form of a small but significant step toward independence for Allie. Her computer arrived fixed and like new. A couple days later the hardware and software we ordered arrived (thank you once again to Auntie Vicky & Marquerite for helping to make these things possible and to Uncle Doug for taking care of the external hard-drive).
Allie's first attempt to work her laptop ended with frustration and tears pretty quickly. Just the basic seemingly simple gesture of moving a cursor had become for her, a huge physical challenge. The system Allie has works with a camera mounted on the top of the screen. The camera tracks a "small paper dot" that sticks either to your forehead or glasses. It moves the cursor as you move. You use a sip and puff stick for right and left clicks. Because of Allie's limited head movement we've found the best place for the dot is on her chin. This is especially difficult. If you can, try and imagine keeping your chin still when you've finally got your cursor where you want it, but at the same time using your mouth to operate the sip and puff to click. I am happy to report though that the next couple of times she made remarkable progress (no big surprise knowing our girl). She's already been talking with friends, started a playlist for a new CD and even downloaded a ringtone for me. When she told me that the best part of working on the computer was the ability to finally do something by herself, I had to turn my head to hide my tears. Once again she makes me so proud and yet at the same time so ashamed. How dare I complain about my frustration with our situation when she continues to show such progress. Watching her tackle this latest challenge reminds me that while we may be missing out on some things that we once took for granted, that in ways never imagined, our new life gives us an opportunity to appreciate the "little" things that most let pass them by.
Adam is the fourth of our children to graduate from SLV High. Thank you Whitney for coming over in the morning to do Al's hair and help her get ready for the big event. It started at noon under a very hot June sun. Thank you, thank you, to the MacCallister's for sharing with us space under their easy-up. Without the shade I don't think Allie or Ron would have made it through. Thanks to Dennis for helping me get Al up the slope and across the lawn. Thanks to my son Alonzo for helping me get her back down the slope! They had a more accessible way to get to the festivities that did not include a slope, but we had parked as close to the tent as possible and so dealt with the slope instead of pushing her across more lawn than we had to, as it is a very bumpy ride for her. The ceremony was very nice and we all went out to the wharf afterwards to celebrate Adam's accomplishment.
Uncle Doug and I brought Allie for a trach change earlier this month. It went well and although there was a small amount of granulation present her docs were very pleased with the way her trachea looked. Al hates trach changes and it is a very stressful time for her. She did a great job though. She likes and trusts her ENT doctors and it gets a tiny bit easier each time.
Friday, Allie went back to Valley Medical for the first time. The minute we drove into the parking lot her stomach began to ache. Four extremely difficult months of her young life were spent here. Her whole life changed here. It was here that she was told she wouldn't walk or breathe on her own. She quickly pulled it together though and was really happy to see many of the wonderful people that had worked with her during her stay. Because Kaiser's rehab center is in Vallejo and really isn't as fully equipped for Al's needs, after many phone calls, discussions and emails, etc. she has approval to go to Valley for Occupational and Physical rehab. We aren't sure yet how many sessions she will get, but we will fight the good fight to get her the best and most we can. The occupational therapist talked with her about which power chair will be most appropriate for her, and will help her to get a much-needed shower chair as well. The consult with the physical therapist is on Monday. Our hopes are that they will work with her on developing some neck strength and Allie is really hoping to get a chance on the exercise equipment in the gym. More progress!
I want to send a special thank you to Tanner, Marguerite, Susan, and Samantha for helping with transfers. Thank you to my sister, Pam my brother-in-law, Rod and my nephews, Nick and Travis for all their work on the corral. Thank you to Ashley for helping Al pick out her new shades. Unlike you, I'm pretty sure I would have lost my patience after the 30th pair:)!
Thank you to all our friends and family that continue to be there for us in so many ways. Your meals, flowers, visits, prayers, love and support are incredible. Thank you to those of you that include us in your prayers even though we've never met. You are the best.
Love, Peace & Happiness,
Deborah
Thursday, May 13, 2010
First Concert, May Flowers, Sunshine & Hope
Dear Family & Friends,
May has always been a favorite month of mine. It marks the beginning of days spent in the sun, my wedding anniversary, mother's day and my birthday. This is the first May since the kids were babies that I will be at home all week during the day. While the circumstances are tragic and most days are still filled with sadness and frustration, something about the season brings renewed hope, or at least the promise of a lot of outside time. It's been tough for Allie being a sun-worshipper like her mom, to struggle with just how much sun is okay and how much is not. She can go in minutes from having the chills to being badly overheated. In spite of the sometimes drastic and scary temp changes she is looking healthier every day and has a beautiful sun-kissed look.
Allie and I have been planting flowers. She directs of course and I pull weeds, dig and plant. The dogs have been especially entertaining lately as they also are enjoying the warm weather and time outside with us. They both can hear Allie's whisper and kiss noises and will come to her when she calls to them. We are venturing out a bit more but Allie is still only up for about six hours and most days are spent at home.
In April Scotty called and asked me if he could take Allie to the Brooks & Dunn concert. Allie was pretty excited at the prospect and I very nervous. A big group of friends was going and she had her heart set on joining them. There was no way I was letting her go without me but, I did hope we could find a way that would allow her some feeling of independence. So began the plans, frustrations, tears, more plans and then change of plans. Going places isn't easy anymore. Nothing is taken for granted anymore. If getting Al in and out of bed is stressful and takes two of us imagine what going to a concert entails. To complicate things further, all her friends had plans to purchase tickets to sit on the lawn. Well, to get to the lawn there are stairs and the lawn is slanted and crowded (not ideal for a wheelchair especially one with a life supporting vent attached). So we attempted to get seats near the accessibility section for a few friends and found out she could have only one attendant! Several attempts were made by me, Kerry and Scotty to get an exception made but, no luck. Scotty and Clinton came over to see if they could carry her up the stairs to the lawn and decided that with four of them it would be an option (I figured I'd have a heart attack for sure but Allie was determined). Well, to make a very long story short it turned out that Auntie Vicky had tickets to the same concert. Auntie Pam and cousin Travis decided to go as well. They planned to arrive early to grab a flat area for us in the front of the lawn. After meeting with the management they were told that there was no way that they would allow Al to be carried up the stairs (although we had been assured on the phone that it is done all the time). The concert was packed and country concerts have a reputation of being rowdy. Allie when she heard the news, (we had just arrived and were in the parking lot) was heartbroken and wanted to go home. Ashley and Samantha talked her into staying. The venue's management with the help of my sister's proding were very nice (especially Kara) and secured us four seats in the accessibility area and would allow Allie's friends to switch off tickets to visit her. She even escorted us through the crowds when we arrived. The concert was awesome and Allie had a blast. Allie had a chance to have several of her friends come and go and our spot was a lot more comfortable and the view a whole lot better than the lawn seats. I was glad it all turned out for the best but it is so disheartening to watch Allie go through the emotional turmoil. Going to a concert when you are twenty should be so easy...you buy your ticket, hop in the car with your friends and go enjoy the music. For my girl nothing is easy anymore.
Overall, Al is doing pretty well physically. No problems with high pressures which is a relief. I think she looks great but she says that coming from me, since I'm her mom, that doesn't mean much. I have to admit that there are times when I am so frustrated with her. I want her to be more optimistic. I want to see more smiles, and have fewer sad times. What it comes down to though is that the frustration I'm feeling is about me. Like all moms I want my baby girl to be happy. Right now in addition to seeing to Al's daily physical needs, as her mom, it's my job to keep her moving forward to try and find that balance between allowing her to grieve her losses and still manage to focus on the positive. I tell her that she is who she is because of her heart and her mind not her body. Easy for me to say. The losses they are so personal and intimate, so constant. They bring feelings of such loneliness and dread. The balance between empathy and "pushing forward" such a tightrope walk for me. Through all this it is actually Allie that is and will set the pace. She always has. She will master things when she is ready. Her fears are justified and will diminish with time. This I know. Her sadness is another story.
We are in the process of getting Al's computer fixed. She is registering for an online English class and has even done a couple of paintings my mouth. She continues to be a source of compassionate and sound advice for friends that share with her life's ups and downs. Her favorite times are those spent with her friends. She also really enjoys spending time with her brothers and sister of course, her cousins, uncle and aunts. It is a welcome break for her when she gets a chance to hang out with someone other than her mom! From my standpoint, in spite of the circumstances, I feel so lucky to have had this time to spend with my daughter. As I've said before I always knew she was special. I just didn't realize how special. I am a better person for having the privilige of watching how she copes, how much she still gives, how she struggles and how hard she tries.
I want to give a huge thank you to Jake and Howard for the Roku box they donated to Allie. She is truly enjoying it. Thank you so much to Keenan and Marquerite for coming to our rescue at the last minute to help transfer Al. If it wasn't for your help she would have had to spend those days in bed. You both did an amazing job and it was a first time for both of you! Allie felt very safe with your help.
Thank you to Randy Smith. He sent Allie a book that we haven't read yet but are looking forward to. I am continuously amazed at how generous and thoughtful people are. We don't know Randy, yet he took the time to write Allie a card and send her a book!
This past few weeks has been especially trying on our family. As many of you already know, Ron had a bad fall working in my soon to be corral area. As a result, he broke his ankle in two places and his arm was so badly broken that after four attempts to set it, he required surgery. Adam has stepped up big time. Helping me with Allie much more than usual, helping his dad when I'm busy with Al, shopping, working around the house and just basically helping to keep our house functioning. Thank you Adam. I am so incredibly proud of you! Thank you to Jim Z., Anjel, my sisters and brother for the extra help since Ron's been down and out (well as much as we can keep him down anyway:).
Thank you to Bianca for your desire and help in exploring the possibilities of getting Allie an FES Bike.
Thank you to all our friends far and near for the love, encouraging comments on the blog, and practical as well as emotional support that you give on a regular basis. It means so much. It keeps us going. Take care.
Thank you. Thank you.
Gotta go.
Love, Peace & Happiness,
Deborah
May has always been a favorite month of mine. It marks the beginning of days spent in the sun, my wedding anniversary, mother's day and my birthday. This is the first May since the kids were babies that I will be at home all week during the day. While the circumstances are tragic and most days are still filled with sadness and frustration, something about the season brings renewed hope, or at least the promise of a lot of outside time. It's been tough for Allie being a sun-worshipper like her mom, to struggle with just how much sun is okay and how much is not. She can go in minutes from having the chills to being badly overheated. In spite of the sometimes drastic and scary temp changes she is looking healthier every day and has a beautiful sun-kissed look.
Allie and I have been planting flowers. She directs of course and I pull weeds, dig and plant. The dogs have been especially entertaining lately as they also are enjoying the warm weather and time outside with us. They both can hear Allie's whisper and kiss noises and will come to her when she calls to them. We are venturing out a bit more but Allie is still only up for about six hours and most days are spent at home.
In April Scotty called and asked me if he could take Allie to the Brooks & Dunn concert. Allie was pretty excited at the prospect and I very nervous. A big group of friends was going and she had her heart set on joining them. There was no way I was letting her go without me but, I did hope we could find a way that would allow her some feeling of independence. So began the plans, frustrations, tears, more plans and then change of plans. Going places isn't easy anymore. Nothing is taken for granted anymore. If getting Al in and out of bed is stressful and takes two of us imagine what going to a concert entails. To complicate things further, all her friends had plans to purchase tickets to sit on the lawn. Well, to get to the lawn there are stairs and the lawn is slanted and crowded (not ideal for a wheelchair especially one with a life supporting vent attached). So we attempted to get seats near the accessibility section for a few friends and found out she could have only one attendant! Several attempts were made by me, Kerry and Scotty to get an exception made but, no luck. Scotty and Clinton came over to see if they could carry her up the stairs to the lawn and decided that with four of them it would be an option (I figured I'd have a heart attack for sure but Allie was determined). Well, to make a very long story short it turned out that Auntie Vicky had tickets to the same concert. Auntie Pam and cousin Travis decided to go as well. They planned to arrive early to grab a flat area for us in the front of the lawn. After meeting with the management they were told that there was no way that they would allow Al to be carried up the stairs (although we had been assured on the phone that it is done all the time). The concert was packed and country concerts have a reputation of being rowdy. Allie when she heard the news, (we had just arrived and were in the parking lot) was heartbroken and wanted to go home. Ashley and Samantha talked her into staying. The venue's management with the help of my sister's proding were very nice (especially Kara) and secured us four seats in the accessibility area and would allow Allie's friends to switch off tickets to visit her. She even escorted us through the crowds when we arrived. The concert was awesome and Allie had a blast. Allie had a chance to have several of her friends come and go and our spot was a lot more comfortable and the view a whole lot better than the lawn seats. I was glad it all turned out for the best but it is so disheartening to watch Allie go through the emotional turmoil. Going to a concert when you are twenty should be so easy...you buy your ticket, hop in the car with your friends and go enjoy the music. For my girl nothing is easy anymore.
Overall, Al is doing pretty well physically. No problems with high pressures which is a relief. I think she looks great but she says that coming from me, since I'm her mom, that doesn't mean much. I have to admit that there are times when I am so frustrated with her. I want her to be more optimistic. I want to see more smiles, and have fewer sad times. What it comes down to though is that the frustration I'm feeling is about me. Like all moms I want my baby girl to be happy. Right now in addition to seeing to Al's daily physical needs, as her mom, it's my job to keep her moving forward to try and find that balance between allowing her to grieve her losses and still manage to focus on the positive. I tell her that she is who she is because of her heart and her mind not her body. Easy for me to say. The losses they are so personal and intimate, so constant. They bring feelings of such loneliness and dread. The balance between empathy and "pushing forward" such a tightrope walk for me. Through all this it is actually Allie that is and will set the pace. She always has. She will master things when she is ready. Her fears are justified and will diminish with time. This I know. Her sadness is another story.
We are in the process of getting Al's computer fixed. She is registering for an online English class and has even done a couple of paintings my mouth. She continues to be a source of compassionate and sound advice for friends that share with her life's ups and downs. Her favorite times are those spent with her friends. She also really enjoys spending time with her brothers and sister of course, her cousins, uncle and aunts. It is a welcome break for her when she gets a chance to hang out with someone other than her mom! From my standpoint, in spite of the circumstances, I feel so lucky to have had this time to spend with my daughter. As I've said before I always knew she was special. I just didn't realize how special. I am a better person for having the privilige of watching how she copes, how much she still gives, how she struggles and how hard she tries.
I want to give a huge thank you to Jake and Howard for the Roku box they donated to Allie. She is truly enjoying it. Thank you so much to Keenan and Marquerite for coming to our rescue at the last minute to help transfer Al. If it wasn't for your help she would have had to spend those days in bed. You both did an amazing job and it was a first time for both of you! Allie felt very safe with your help.
Thank you to Randy Smith. He sent Allie a book that we haven't read yet but are looking forward to. I am continuously amazed at how generous and thoughtful people are. We don't know Randy, yet he took the time to write Allie a card and send her a book!
This past few weeks has been especially trying on our family. As many of you already know, Ron had a bad fall working in my soon to be corral area. As a result, he broke his ankle in two places and his arm was so badly broken that after four attempts to set it, he required surgery. Adam has stepped up big time. Helping me with Allie much more than usual, helping his dad when I'm busy with Al, shopping, working around the house and just basically helping to keep our house functioning. Thank you Adam. I am so incredibly proud of you! Thank you to Jim Z., Anjel, my sisters and brother for the extra help since Ron's been down and out (well as much as we can keep him down anyway:).
Thank you to Bianca for your desire and help in exploring the possibilities of getting Allie an FES Bike.
Thank you to all our friends far and near for the love, encouraging comments on the blog, and practical as well as emotional support that you give on a regular basis. It means so much. It keeps us going. Take care.
Thank you. Thank you.
Gotta go.
Love, Peace & Happiness,
Deborah
Wednesday, April 7, 2010
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
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
Monday, March 15, 2010
Pain, Despair, the Mall & Good Friends
Hi Everyone,
This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interrupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!
Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.
The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.
Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.
Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.
The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.
I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.
Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.
Thank you for all your prayers, love & support. We could not do this without you, please know that.
Love, Peace & Happiness,
Deborah
This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interrupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!
Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.
The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.
Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.
Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.
The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.
I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.
Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.
Thank you for all your prayers, love & support. We could not do this without you, please know that.
Love, Peace & Happiness,
Deborah
Sunday, January 31, 2010
Happy New Year?
Hi Everyone,
I know some of you look for updates and we appreciate you so much. I apologize that it's been so long.
I hope the holidays were wonderful, fun and relaxing for you all. December was a great month for visitors. Many of Allie's friends were home from college and it was great for her to see people she hadn't seen in a while. Christmas for us was a lot more low key than in years past, but we were thankful to be together and our tree was beautiful. This year we tried something different. Instead of "santa" going crazy and "delivering" a bunch of gifts we took Allie's suggestion and did secret santa. We each bought for only one other person in the family. We wrote short lists and set a small dollar limit. I ventured out to the mall once, but other than that Allie and I did our shopping online. The following day our extended family came..aunts, uncles and cousins and we played our annual white elephant gift exchange. Allie was the first to begin the "stealing". She was much more comfortable with the crowd than on Thanksgiving and everyone had a great time.
I'd love to say that we toasted with champagne and banged pots to bring in the new year but things for us didn't quite go that way. To be honest, I really didn't even realize it was new years eve until later that afternoon. I got a call that morning from my brother that mom wasn't doing well and that maybe I should head over to see her. She'd been kind of up and down for a while and in and out of the hospital but the drive to Walnut Creek or Concord took longer than I was comfortable leaving Allie, so I hadn't been able to see her much. So anyway, on the drive over listening to the radio I learned that it was new years eve. I spent a couple hours visiting with my mom. I brought Dixie my dog. She had a way of cheering up grandma more than any of us did! I headed home only to find that Allie was having some difficulty with her breathing. We transferred her to her chair hoping that sitting upright would help but the high pressures continued. We feared that her trachea had begun closing again. At one point, she briefly passed out and we called 911. Then she seemed okay so we cancelled and began the discussion about what to do next. After our last experience we were all a bit apprehensive about going to Dominican and Allie was pretty set on not going there! It was clear we could not vent her and we needed to do something, but we wanted to do the right thing. We talked about driving her to Kaiser. We weren't sure which scenario scared us the most. The trip over the hill (on a holiday) bagging her all the way. What if she were to go into cardiac arrest? What if we brought her to Dominican and we had to sit for hours again and wait for transfer to Kaiser? What if we were to have a repeat of her last visit there? Even though we had cancelled the 911 call, our friends from Felton Fire showed up anyway thinking we may need some help. We did!! They were, to say the least, concerned about our idea of driving over the hill but supportive and understood our concerns. Attempts were made to secure an ambulance over the hill but none were available. Allie really didn't want to get in an ambulance anyway and since she was in her chair wanted us to drive her where ever we decided to go. They made more calls and a paramedic supervisor (sorry I don't remember his name) showed up. He made a call to Dominican's ER and assured us that they would be ready for us and that it was the safest decision. We put it to a vote and Allie, Ron, Adam and I all voted that a trip over the hill was maybe not the brightest decision. We drove to Dominican in our van and the supervisor drove along side to make sure we got there safely. I am very pleased to report that our experience there this time was awesome. There was a vent and an RT ready to assist Allie with her breathing. Plans begun immediately to transfer Allie to Kaiser. Kaiser sent an air ambulance/helicopter and this time I was able to sit right next to Allie (actually she refused to go otherwise). She was scared but calm during the short ride.
When we arrived at Kaiser the same doc that was in ICU last time had heard she was coming and stayed late to be there when we arrived. Staff was on hand and all emergency equipment ready. I am extremely pleased to say that the ride and arrival went without incident. The air nurses were great and Allie was comfortably transferred from their hands to her hospital bed. What a dramatic change from last time!
After things quieted down and people began to leave and it was just a nurse, Allie and me in the room, she said mom look at the clock, I turned and looked, it was two minutes to 12. Happy New Year? We weren't so sure.
It was a long and quiet weekend. Friends and family visited and we watched movies to pass the time. Monday, Allie went into surgery. Her docs found that the temporary tube that had been placed to maintain her airway after her last surgery, had shifted and was laying against her tissue wall and preventing her from getting sufficient air. They replaced the tube with her regular style trach and removed just a small amount of granulation this time. Al sailed through the surgery.
We prayed and crossed our fingers...maybe she'd get her voice back now. Over the next couple of days it became clear that wasn't going to happen. We were relieved that she was doing well, but we were crushed that she still couldn't speak.
As always it was wonderful to get back home. Since then Allie's been back for a check up and her trachea looks really good. Things seemed to have calmed down in there and her doctor has promised to look into the possibility of a smaller trach tube that might allow Al to talk.
On January 17 my mom decided that the battle she had been fighting was a losing one and that she was too tired to do it anymore. I joined my sister's and brother as we spent the afternoon saying goodbye and doing our best to see that my mother's passing was as pain-free and gentle as it could be. Our hearts broke and the grief almost unbearable, as she peacefully went to sleep. It was the longest amount of time I'd been away from Allie since her accident. When I got home she told me that while she was sorry for our loss it made her happy to know that she now had another guardian angel to watch over her.
The last few weeks Allie has been suffering from an increasing amount of back and now arm pain. Pain in a paralyzed person is, quite possibly the cruelest part of the injury, I sometimes think. Her dad and I like to think that the spreading of the pain is her nerves waking up and awake nerves give us hope. I know there are many people out there working on a cure/treatment for spinal cord injuries...thank you and please hurry!
Allie was able to attend her Grandma's funeral. We gave her the option to hang out in the back of the church with dad in case she needed suctioning or became anxious, and I was very proud when she elected to sit up front with the rest of the family. After the service we went to Auntie Vicky's and were able to get Al into the house with the help of a portable ramp that Kerry got for her (thank you Kerry), from Jennifer who generously contacted us via this blog (thank you Jennifer). Michael from Mac Cal has also offered to manufacture or purchase and modify ramps for Allie, so we expect she should have access to many of the places she wants to go, before too long. It was a long day for Allie (as was for all of us) and she did fantastic. She's abandoned her neck collar completely now, which is awesome and shows that she has gained a bit more strength in her neck. Driving still does take its toll though, and her brother and sister took turns holding her head during turns and over bumps in the road. When we got home from the service and Allie was tucked back into bed, I told her how beautiful she'd looked and how proud I was of her. She looked at me with tears in her eyes and said "mom I hate being like this". "I know you do baby, I hate it too" was all I could say in response.
So far 2010 has brought Allie another trip to the hospital, the loss of her grandma, more pain, no visible improvement in her state of paralysis and still nothing more than a slight whisper. On the other hand, we have had visits from family and friends that previously had been reluctant/afraid/resistant to visit (my daughter's ability to put people at ease never ceases to astound me). Fewer mornings are filled with overwhelming sadness and we continue to get out a little more.
Auntie Sandi bought Allie a clock and it hangs in her bedroom where she can see it everyday. I will leave you with the words written on the clock --
Every Moment Holds The Possibility Of A Miracle
Here's to us all. Happy New Year. We love you and we thank you for your continued and amazing support.
Love, Peace & Happiness,
Deborah
I know some of you look for updates and we appreciate you so much. I apologize that it's been so long.
I hope the holidays were wonderful, fun and relaxing for you all. December was a great month for visitors. Many of Allie's friends were home from college and it was great for her to see people she hadn't seen in a while. Christmas for us was a lot more low key than in years past, but we were thankful to be together and our tree was beautiful. This year we tried something different. Instead of "santa" going crazy and "delivering" a bunch of gifts we took Allie's suggestion and did secret santa. We each bought for only one other person in the family. We wrote short lists and set a small dollar limit. I ventured out to the mall once, but other than that Allie and I did our shopping online. The following day our extended family came..aunts, uncles and cousins and we played our annual white elephant gift exchange. Allie was the first to begin the "stealing". She was much more comfortable with the crowd than on Thanksgiving and everyone had a great time.
I'd love to say that we toasted with champagne and banged pots to bring in the new year but things for us didn't quite go that way. To be honest, I really didn't even realize it was new years eve until later that afternoon. I got a call that morning from my brother that mom wasn't doing well and that maybe I should head over to see her. She'd been kind of up and down for a while and in and out of the hospital but the drive to Walnut Creek or Concord took longer than I was comfortable leaving Allie, so I hadn't been able to see her much. So anyway, on the drive over listening to the radio I learned that it was new years eve. I spent a couple hours visiting with my mom. I brought Dixie my dog. She had a way of cheering up grandma more than any of us did! I headed home only to find that Allie was having some difficulty with her breathing. We transferred her to her chair hoping that sitting upright would help but the high pressures continued. We feared that her trachea had begun closing again. At one point, she briefly passed out and we called 911. Then she seemed okay so we cancelled and began the discussion about what to do next. After our last experience we were all a bit apprehensive about going to Dominican and Allie was pretty set on not going there! It was clear we could not vent her and we needed to do something, but we wanted to do the right thing. We talked about driving her to Kaiser. We weren't sure which scenario scared us the most. The trip over the hill (on a holiday) bagging her all the way. What if she were to go into cardiac arrest? What if we brought her to Dominican and we had to sit for hours again and wait for transfer to Kaiser? What if we were to have a repeat of her last visit there? Even though we had cancelled the 911 call, our friends from Felton Fire showed up anyway thinking we may need some help. We did!! They were, to say the least, concerned about our idea of driving over the hill but supportive and understood our concerns. Attempts were made to secure an ambulance over the hill but none were available. Allie really didn't want to get in an ambulance anyway and since she was in her chair wanted us to drive her where ever we decided to go. They made more calls and a paramedic supervisor (sorry I don't remember his name) showed up. He made a call to Dominican's ER and assured us that they would be ready for us and that it was the safest decision. We put it to a vote and Allie, Ron, Adam and I all voted that a trip over the hill was maybe not the brightest decision. We drove to Dominican in our van and the supervisor drove along side to make sure we got there safely. I am very pleased to report that our experience there this time was awesome. There was a vent and an RT ready to assist Allie with her breathing. Plans begun immediately to transfer Allie to Kaiser. Kaiser sent an air ambulance/helicopter and this time I was able to sit right next to Allie (actually she refused to go otherwise). She was scared but calm during the short ride.
When we arrived at Kaiser the same doc that was in ICU last time had heard she was coming and stayed late to be there when we arrived. Staff was on hand and all emergency equipment ready. I am extremely pleased to say that the ride and arrival went without incident. The air nurses were great and Allie was comfortably transferred from their hands to her hospital bed. What a dramatic change from last time!
After things quieted down and people began to leave and it was just a nurse, Allie and me in the room, she said mom look at the clock, I turned and looked, it was two minutes to 12. Happy New Year? We weren't so sure.
It was a long and quiet weekend. Friends and family visited and we watched movies to pass the time. Monday, Allie went into surgery. Her docs found that the temporary tube that had been placed to maintain her airway after her last surgery, had shifted and was laying against her tissue wall and preventing her from getting sufficient air. They replaced the tube with her regular style trach and removed just a small amount of granulation this time. Al sailed through the surgery.
We prayed and crossed our fingers...maybe she'd get her voice back now. Over the next couple of days it became clear that wasn't going to happen. We were relieved that she was doing well, but we were crushed that she still couldn't speak.
As always it was wonderful to get back home. Since then Allie's been back for a check up and her trachea looks really good. Things seemed to have calmed down in there and her doctor has promised to look into the possibility of a smaller trach tube that might allow Al to talk.
On January 17 my mom decided that the battle she had been fighting was a losing one and that she was too tired to do it anymore. I joined my sister's and brother as we spent the afternoon saying goodbye and doing our best to see that my mother's passing was as pain-free and gentle as it could be. Our hearts broke and the grief almost unbearable, as she peacefully went to sleep. It was the longest amount of time I'd been away from Allie since her accident. When I got home she told me that while she was sorry for our loss it made her happy to know that she now had another guardian angel to watch over her.
The last few weeks Allie has been suffering from an increasing amount of back and now arm pain. Pain in a paralyzed person is, quite possibly the cruelest part of the injury, I sometimes think. Her dad and I like to think that the spreading of the pain is her nerves waking up and awake nerves give us hope. I know there are many people out there working on a cure/treatment for spinal cord injuries...thank you and please hurry!
Allie was able to attend her Grandma's funeral. We gave her the option to hang out in the back of the church with dad in case she needed suctioning or became anxious, and I was very proud when she elected to sit up front with the rest of the family. After the service we went to Auntie Vicky's and were able to get Al into the house with the help of a portable ramp that Kerry got for her (thank you Kerry), from Jennifer who generously contacted us via this blog (thank you Jennifer). Michael from Mac Cal has also offered to manufacture or purchase and modify ramps for Allie, so we expect she should have access to many of the places she wants to go, before too long. It was a long day for Allie (as was for all of us) and she did fantastic. She's abandoned her neck collar completely now, which is awesome and shows that she has gained a bit more strength in her neck. Driving still does take its toll though, and her brother and sister took turns holding her head during turns and over bumps in the road. When we got home from the service and Allie was tucked back into bed, I told her how beautiful she'd looked and how proud I was of her. She looked at me with tears in her eyes and said "mom I hate being like this". "I know you do baby, I hate it too" was all I could say in response.
So far 2010 has brought Allie another trip to the hospital, the loss of her grandma, more pain, no visible improvement in her state of paralysis and still nothing more than a slight whisper. On the other hand, we have had visits from family and friends that previously had been reluctant/afraid/resistant to visit (my daughter's ability to put people at ease never ceases to astound me). Fewer mornings are filled with overwhelming sadness and we continue to get out a little more.
Auntie Sandi bought Allie a clock and it hangs in her bedroom where she can see it everyday. I will leave you with the words written on the clock --
Every Moment Holds The Possibility Of A Miracle
Here's to us all. Happy New Year. We love you and we thank you for your continued and amazing support.
Love, Peace & Happiness,
Deborah
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