Saturday, October 26, 2013

A Place To Call Home + Update

Back when Jason was at Walter Reed, there was a certain thought that kept circulating in my head: where are we going to live once he's discharged? Before Jason deployed we had just moved into a rental home that we loved in a city that we loved even more. The house was perfect for us at the time, but it was two levels and all bathrooms and bedrooms were up a flight of stairs. After Jason was hurt, I knew we couldn't come back and it broke our hearts.

Stairs are not the only enemy of wheelchair users. Things like narrow doorways and hallways, reaching across stovetops, and unaccessible bathrooms are just a few of the many things that make finding an accessible home so difficult. Even in the house we are temporarily in now (while we are so thankful and grateful to live in) has many problems that still make me uncomfortable leaving Jason alone. And although we have made adjustments where we can, this is not a house we own and there is only so much we can do to a place that is temporary.

In my last post, I wrote briefly that we were waiting for the official acceptance into Homes For Our Troops, the organization that would be gifting us an accessible home. And I'm writing now to say we have been officially accepted. In the next year to year and a half we will have a home that we can call ours, one that Jason can live in completely independently. And while I'll always worry a little when he's alone, I'll be able to breathe a lot better knowing that he can access everything in the house that he needs.

The organization, Homes For Our Troops, has built over 100 homes since 2004 for wounded veterans. These homes are spectacular and well thought out for the life of the veteran. Not only is the charity a blessing, but the people behind it are some of the most incredible and caring people we've met. Soon our information and story will be on their website, but in the meantime please check them out, read the stories of the other veterans they have helped and consider donating. We plan on fundraising as well and will keep everyone informed. https://www.hfotusa.org A huge, never ending thank you to Homes For Our Troops for giving us a place to call home.

October has been not too busy for Jason and me, which has been refreshing. Jason's handcycle arrived about a week before the Detroit Marathon, which Jason completed in 2 hours and 12 minutes. Not bad for someone who didn't get the bike the whole summer! And check out the impressive beard.


We also got the chance to go back to California for a few days to support another great organization, The Carrington Foundation. They held a golf tournament that also benefitted Tunnels to Towers, The Gary Sinese Foundation, and Veterans Airlift Command. We saw some old friends, met some new ones, and enjoyed the gorgeous weather before coming back to the Ohio cold.

Thank you to everyone who continues to follow our story and pray for us!


Thursday, September 12, 2013

Overdue Update


It has been waaay too long since my last update and again I find myself apologising for the lack of updates. A lot has happened, so lets get to it!

Since the last update we've done a bit of traveling. We went to Washington for my best friend's wedding. Right after that we went to Mexico for a family vacation. This was our first international travel adventure and it wasn't as scary as we thought it would be (although it still was a little). We spent the week laying by the pool, getting a tan, and seeing beautiful sunsets like the one in the picture above.

At the very end of July we packed up our belongings, dog, and cat, and headed out to Ohio. It was extremely sad to leave San Diego. We've come to love the weather, the ocean (we had just learned how to surf before we left), and the people who had been taking care of Jason at Balboa Naval Medical Center. But we are now settled in Ohio and getting used to life in the midwest. I love Fall and cannot wait to have cooler weather again.

September 3rd marked Jason's official retirement date. Since he's been on terminal leave since June it doesn't feel much different, only now we have the VA to deal with but because he doesn't need medical care routinely we won't need their assistance with much for now.

A week ago we went to Boston to a conference for Homes For Our Troops. This wonderful organization builds homes for severely injured vets at no cost. These homes are custom made for disablement and we are awaiting our confirmation that we'll be getting a home. Usually it takes anywhere from one to two years to get a home built. We'll keep everyone updated as we go along in the process.

Mainly we have been trying to establish what a normal life means for us now. Jason is waiting on going back to school until we have our house built because we don't want to settle down in the area we are in now. He may get started on some internships or some online courses, but of course this is all up to him and in his own time. The reason for the lack of updates is also because, well, our life is pretty boring! There are only a few things coming up that are exciting, like Jason hopefully participating in the Detriot Marathon (I saw hopefully because we're still waiting on his bike to come).

My goal is to give an update once a month or every two months. There hasn't been much to update, but I hope everyone sees that as a good thing. As always, we have appreciated every single prayer that you have made for us. People are still surprised to see Jason doing so well after 16 months post injury, but those who know the Lord know that we shouldn't be surprised. We continue to seek Him everyday, in every big decision we make. And He has never led us astray. Thank you everyone for your continued support and love. Until next time! 

Wednesday, June 12, 2013

One Year + Big Changes

May 30 marked the one year anniversary of Jason's accident. The day is referred to as Alive Day. Jason and I did not want this day to be sad, in fact no tears were shed. Alive Day is celebrate the accomplishments and how far he has come in a year. He has had over 20 surgeries, biked two marathons, skied all over the Park City, learned to golf, drives himself everywhere, grills for me (because I'm terrible at it), and still my funny, smart, sweet man. There are no words to describe how proud I am of him and proud I am to be called his wife.
 
On June 2, Jason hand cycled the San Diego Rock 'n Roll Marathon. He came in 7th out of 22 with a time of 2 hours and 9 minutes. He is due to be getting his own hand cycle soon and is planning on some more marathons and cycling events later this year.


The biggest change that has come about is Jason receiving the results of his medical board. He got his results much faster than any one anticipated, and because of this he will be medically retiring from the Army in a few months. This means that we will be moving out of the San Diego area and to Ohio until our house is built. We are both excited and ready to start our lives outside of the Army. We would appreciate any prayers for our upcoming move and transition.
 

Wednesday, May 8, 2013

Phantom Pains (And a Jason Update)

The above picture is one where Benny our cat is comforting Jason during a bought of phantom pains. If you know the love/hate saga between these two then you'll look at this picture as a miracle.

Yesterday and today Jason's had a bad case of phantom pains. I've decided to write about it because it is most likely going to happen to all who have had amputations. Before I go further I have to write a disclaimer that all the suggestions and advice I give is coming from me, a PTA student and exercise science grad. I am not a doctor or other medical professional (yet) so before you go and do anything I suggest please consult your medical professional that you seek care from.

So what are phantom pains? Its a sensory phenomenon where the amputee feels pain or sensation coming from the amputation site. The sensations can be anywhere from feeling the limb is there (and that it's behaving normally) or feeling pain, tingling, heat, cramping, twitching, or that a part is moving. Jason typically feels like his knee is having intense muscle spasms, but of course he doesn't have his knees. It's a feeling that at the beginning really bothered him, the idea that something that isn't there is telling his brain that is it. He's come to terms with it better but it doesn't make it any less annoying.

Not every amputee has phantom pains but everyone I have talked to has experienced some sort of sensation. In fact in the beginning Jason didn't have any phantom pains but slowly he began to have sensations. Some things that we've found that triggers his pains are dehydration. When he tends to slack on drinking water that's when the pains return. Other times it's just random, like these past two days. He has been drinking bottle after bottle of water, but that's not helping. So what do we do when the pains come? Here are some things that we do and other suggestions that we've been given by his occupational and physical therapist.

-Jason does have pain medicine that he can take, but often time once it wears off the pains return and other times it goes away. There are specific drugs for neurological pain that can be prescribed. Jason was on these at Walter Reed but was slowly taken off them because he wasn't complaining of phantom pain.

-Heat and ice can be affective. Again, sometimes it works and sometimes it doesn't. I usually apply the pack for 20 minutes on, 20 minutes off. Just remember to use lots of layers between the heat or ice pack and the skin.

-Tapping and rubbing the site of the amputation helps take away the pain as well. The tapping and rubbing sends signals back to the brain that the nerves end at the site of amputation and the signals no longer go down the limb. It can also be affective to have the amputee touch the area that he is feeling pain on another person. Again it's about training the brain. Once we were hanging out with another amputee and he got a pain in his ankle (he was a bilateral above the knee amputee) He reached for my ankle and started to scratch it and it helped his pain go away.

-Another way to train the brain is mirror therapy. Using a mirror to look at the end of the amputation sends signals to the brain that the limb is no longer there. This technique doesn't work for Jason, but I've seen it work for lots of other amputees.

Amputee Coalition (http://www.amputee-coalition.org) is a great resource for pain management for amputees, and a good resource in general.

Phantom pains just plain suck. All Jason can do is wait it out or try some of the above techniques to make it go away. But it helps to have a cat to cuddle with too.

-----------------------------------------------------------------------------------------------
Jason Update!

For those that don't know Jason had his final surgery to reverse his colostomy several weeks ago. He was in the hospital for a week and had a wound vac on his incision and stoma site until this past Tuesday. He's healed pretty well but it's not fully closed so we are doing dressing changes at home for the next week. My hope is that next week they'll actually stitch close the wounds. Jason is dying to get back on his handcycle and go swimming too, but we gotta wait until he is all healed up. Other than the incision stuff and the phantom pains, he is doing great.

May 30 will be Jason's "Alive Day", the one year anniversary of his accident. We haven't really discussed what he wants to do on that way, but the next day is also his birthday. Any suggestions would always be appreciated (you can comment here or if you are a Facebook friend message me there).

A crazy thing that happened to me was getting to be apart of the starting nine for the Padres game on Military Spouse Appreciation day. I got to run out onto a position on the field, then meet a player and run back off field. I love baseball and this was a fun day for Jason and me.





Sunday, April 14, 2013

Traveling with a Wheel Chair



The thought of flying with Jason’s disability gave us both anxiety at the beginning. We had read horror stories in the news of how people in wheel chairs had been mistreated, or wheel chairs being lost or broken. Losing or breaking Jason’s wheel chair would be detrimental. It was also the fear of the unknown. But we knew that we would have to travel sometime since we are both away from our families. However, with the help of the internet and a dear friend of mine whose husband is in a wheelchair, we have been able to have relatively smooth flights. Here are some tips that we have discovered that we hope can help others.
 
These are things that I’ve discovered traveling with a person who can independently transfer, has a mechanical wheel chair, and has no legs. I can’t speak for traveling with a motorized wheel chair or a person who can’t transfer independently, but I will link below websites that may have answers to those questions.
 
-Call the airline at least 24 hours in advance to let them know you’ll be traveling with a person in a wheel chair. They’ll ask what kind of assistance you will need, such as assistance to and from the gate, or an aisle chair. This lets the airline prepare as necessary.
 
-When you call it’s a good idea to let them know how you want to check the wheel chair. We have always checked the wheel chair at the gate, meaning that when Jason’s transferred to the aisle chair (I’ll talk about that in a minute) the chair gets put with the other baggage below the plane. This is the only way we have checked his chair and that’s the only way I’ll allow it because it minimizes the chance of it getting lost.
 
-Going through security isn’t too bad. There is a special aisle for people in wheel chairs off to the side. The person traveling still has to abide by security rules, such as the amount of liquids allowed, etc. They use the wand over Jason and do a pat down. While they do that, they will wipe down Jason’s chair with gloves to check for explosive residue. Once that gets the all clear (only takes a minute) he is good to go. It’s pretty simple and painless. Sometimes I get to go with him and sometime I have to go through the regular security line.
 
-When you are at the gate, check in at the desk and let them know you’ll need priority boarding as well as tags for checking the wheel chair.
 
-I haven’t read anything to the contrary, but medical equipment doesn’t count toward your carry on limit. This means cushions and wheel chair parts, as well as any other medical equipment you require. A great tip from my good friend was to carry an extra bag and use it to hold all the removable wheel chair parts. When you check the wheel chair, it is recommended to remove all the parts that could come off. For Jason’s chair this means the back rest, arm rests, tippy bars, cup holder, and cushion (his chair is a Transformer I swear) I can fit all the parts except the seat cushion in the bag I bring.
 
-In order to get down the very narrow aisle, you will have to transfer to an aisle chair. It’s basically “a seat on a dolly” according to Jason. It is small and has chest and lap straps to keep the person in. An airline employee will take the person down the aisle and to their seat.
 
-The seats on the airplane aren’t very comfortable and we always bring a cushion for Jason to sit on. Also be prepared to be the first on the plane, as well as the last off. We haven’t had to do layovers yet, but keep that in mind when flying that you may need more time in your layover to account for this.
 
-When you land, the wheel chair should be right where you get off the plane with other items like strollers and car seats.
 
Here is a special tip for wounded vets. There is a great charity called Veterans Airlift Command. Pilots who fly private plans donate their time and plane to fly wounded vets around the country. It doesn’t cost anything and they do this on their own dime. The picture at the top of the post is of us traveling via VAC.  You have to be able to get into the small planes and be flexible in your travel plans. We did this last Christmas and didn’t know our flight details until the day before and the day of. Regardless, it was a cool experience and you don’t have to deal with airport security and formalities. Here is their website http://www.veteransairlift.org/
 
These are some other links for traveling with a disability:
 
 
This is a cool video that this lady did of her experience http://www.youtube.com/watch?v=IrS7NROyRd0
 
I hope that this post helped to lesson anxieties. Once we did one flight, the rest have been smooth. Don’t be afraid to ask for help from the airline or airport, and don’t let being in a wheel chair keep you from traveling! This summer we will be doing our first international trip and I’ll be posting about that experience when it happens.
 
 


Sunday, March 24, 2013

A Jason Update

First I have to apologise for the lack of posts on both mine and Jason's blog. I'm afraid Jason isn't into writing anymore and I've been consumed by school. However, I have lots of ideas for new posts and I'll be taking over updating everyone on how Jason is doing and when he feels like it he will update his blog. Again, we are very sorry to have been lacking in the posts.

Can I just say that we both feel so incredibly blessed beyond what we could imagine by the opportunity's we have had this year? So much has happened this year and it's only March! Let me get everyone up to speed on what we have been doing pretty much every week this year.

1) The Ball




 









It was such a privilege to be able to attend the military home coming ball for Jason's unit. The experience was not only a blast but so healing for Jason to be able to see his guys, his friends. The ball itself was almost too much fun (as these events can be) but I even got Jason out on the dance floor!

2)Ski Trip to Park City
Another opportunity we got was to go away to Park City, UT with other wounded warriors for a ski trip that also included dog sledding, biathalon training, hot springs, bowling, wall climbing, and lots more! Jason spent three days bi-skiing (which you can see in the picture above) and he went all OVER the mountain, even getting up to intermediate runs. He had a blast and a boost to his confidence. There's nothing he can't do! We also met some wonderful people who have served this country and we left with more friendships than we had in the beginning.
 
 3) Key to the City of Coronado
















Jason was nominated by people at the hospital to be one of three wounded warriors to receive the key to the city of Coronado. It also included a weekend stay at the historic Hotel Del Coronado and other cool things, like a dinner and a police ride along. Here is an article about the weekend that also has a bit about Jason in it
http://coronado.patch.com/articles/coronado-san-diego-intense-rapid-regrowth-how-wounded-warriors-learn-to-thrive-military-combat-wounds-rehabilitation#photo-13629110

4) Segs4Vets

Jason had applied for a special seated Segway from the nonprofit organization Segs4Vets. A few weeks ago he received his Segway after two days of training with a ceremony on the aircraft carrier the USS Midway. The Segway is awesome in that it is pretty much all-terrain and we have taken it on a couple of trips such as Coronado and Seaworld.
 
 
5) LA Marathon
On St Patricks Day Jason biked the LA Marathon in 2.06 hours. At about mile 8, his brakes failed while going downhill causing him road rash on his arm. However, Jason kept going using his parking brake to slow down and did so well considering. Before the marathon the most he had biked was 10 miles and had been out only three times, so we are so proud of him for this accomplishment! He is planning a couple more marathons this year.
 
Well that about does it for the updates on what we've done! Medically, Jason has been doing really great. He is walking more and more every week, and last week he walked 300 feet! His goal for this upcoming week is 600 feet, so we will keep you posted on how he does! We are waiting for his new legs called RGOs. They have a different way of manipulation that will make it so he will expend less energy when he walks. It'll be a couple more months before he gets those.
 
We thank everyone for the continued prayers and support. It'll be one year since his accident in a few months and I'll have a special request for everyone when the time comes. Thank you for reading and sharing this journey with us, and stay tuned for more posts!


Saturday, February 16, 2013

"We cannot direct the wind, but we can adjust the sails"



The quote in the title is from Dolly Parton. I have to pause for a minute and tell you that I adore her so much. Her music is brilliant and the top of my bucket list is to visit Dollywood. Ok enough of that…
 
 
One of the hardest things about this experience has to be letting go of certain dreams and adapting to new ones. Originally I was going to title this post ‘Don’t Make Plans’. The reason came from when Jason and I first arrived at Balboa. Jason was getting occupational therapy while at the same time another patient was visiting us. He was a high amputation as well, so I took the opportunity to ask questions. Among the many tips he gave me, he told me something I will never forget.
 
 
“Don’t make plans. They will never work out and you’ll only end up disappointed.”
 
 
If you know me you know that I am somewhat of an optimist. When he told me this I thought naw, I don’t think that’s true. I’m writing today to say that it is partially true.
 
 
I suppose you could say that what he told me goes along with the saying ‘if you want to hear God laugh tell Him your plans’. It doesn’t stop us from making plans anyway. In fact Jason and I had a lot of things planned when he was to get back from deployment, but those plans haven’t happened and may not ever.
 
 
It’s heartbreaking sometimes to think about the future we envisioned for ourselves. It’s difficult to see others around you “advancing” in their lives while you stay stuck in one place. However, I am always reminded that no matter what future I am grieving, Jason is alive. I still have my husband. He still has his stunning smile, his contagious laugh, his sweet heart, and his inspiring courage. When it comes down to it, that is what matters most of all and I consider myself so incredibly blessed.
 
 
The main point of this weird post is to be adaptable. This may be hard for those Type A personalities (like myself) but every day you have to be open to things not going the way you planned. It’s important to be adaptable, be as prepared as you can, and have a plan B (sometimes even a plan C and D). Another point to this is don’t take it hard and don’t let your spouse take it hard. There have been many outings we’ve had to drop out of because of phantom pain. We once had to leave church early because one of the consequences of losing a good half of your body is temperature regulation, and Jason was overheating so badly we had to go.
 
 
Also, look forward to things in your new future. We are looking forward to a ski/snowboarding/dog sledding trip to Utah, our house from Homes For Our Troops, my graduation from physical therapist assistant school, the start of Jason’s schooling, lots of traveling in the summer, and so on and so on. There is so much to look forward to and still so much to be hopeful for. So take some wise advice from Dolly and change the sails.

Tuesday, January 15, 2013

Take Care of You

At some point I think everyone in my life said that to me. Make sure you are taking care of you. Find time to take care of yourself. In response I would always say I would try and that was my honest reply. I would try but no guarantees that I would succeed.
 
I will tell you, it’s nearly impossible in the beginning to take care of yourself. Jason didn’t want to be left alone once he got out of ICU and we didn’t want to leave him alone. After too many fiascos it was better that someone be with him all the time and it helped him with his anxiety. So my mother in law and I took turns sleeping over night with him. And from June to October I don’t think I got more than a couple hours sleep a night. The reasons were varied, from worry to incredibly uncomfortable “beds” in the inpatient rooms to attending to Jason when he needed something.
 
The lack of sleep coupled with increased stress and anxiety caused me to have many emotional breakdowns, most of which happened in my Fisher House room on my night off from staying overnight with Jason. I remember one particular night lying in bed and I kept thinking I don’t know myself anymore. I couldn’t be there for my friends, couldn’t rejoice with them over new babies or new jobs. I couldn’t be comforting to them when they were struggling. I didn’t have my job that I loved. I wasn’t a student anymore in the school that I loved. My husband literally lost half of himself and all the plans that we had made were gone. I was literally on the opposite side of the country from my support network.
 
I was too emotionally and physically spent to even begin to think of my needs. Jason’s needs absolutely had to come first. Some people didn’t understand this, but the people who did were either people going through my situation or parents. A wounded warrior spouse once told me that if you can make it through all this, you are set for children. As a parent you put your child’s needs before your own (or so I’m told, we don’t have any children) and this is what had to happen with Jason. And please know that I am not complaining or whining. I would do it all again in a millisecond for him. But I say this to tell others, to promise them, that you will be able to think about yourself again one day. Everyone is different and I can’t tell you when it will happen but I promise it will.
 
It took a long time but I did very slowly manage to find time to take care of myself. And if you are going through what I went through I know exactly what you are thinking, Seriously? When do I have time for myself? How do I do this and take care of my husband? Here are some things that I found beneficial for me:
 
-If you are staying the nights with your loved one in the hospital, get others involved. If there are family members that you trust and want to help, get them to stay a few nights while you get sleep, shower, whatever you need to do to put yourself together again.
 
-Can I just say how essential it is to shower? If it’s been a while, go take one. Now.
 
-While hanging out with your loved one, don’t just sit and stare at each other. Read a book (or read to him), play card games or board games, knit or crochet, etc. It can be easy to just sit and watch TV all day but that will drive both your loved one and yourself crazy after a while. Jason’s attention span in the beginning was very short but gradually built up over time.
 
-To stay active I did little things like take the stairs instead of the elevator. At Walter Reed there is a field with a track by the school that I used to do a few laps on my days away from the hospital. I was nowhere near what I was prior to Jason getting hurt, but it felt good to do a little work out.
 
-Make sure you eat and try to make good choices when eating. A part of feeling good is eating good. On the other hand, pretzel M&Ms are pretty awesome too.
 
-Some dear friends of mine sent us a care package that actually had things in there for me; face masks, my favorite lip balm, lotion, etc. Little things like that were so special and welcome. If you know someone going through something like this or similar, send them a care package. They need it.
 
-Pray, pray, pray. Most of my strength came from relying on God because I had none to begin with. I know that on days when I felt hopeless, I could always put hope in Him. I will admit that the first few weeks I couldn’t pray. I couldn’t bring myself to speak to God. At one point I told Him, “I can’t talk to you right now. Know that I still believe, but I can’t talk.” I know that He was still with me and continues to be. And ask others to pray for you too. I swear I could feel the love and prayers from those that knew our story. It is overwhelming in a positive way.
 
-Journaling is wonderful. A dear sweet relative of Jason’s gave me a journal and a daily devotional and both turned out to be essential to me and Jason. The journal let me get it all out there, the brokenness and hurt, all the things I didn’t dare say out loud. It let me get it out of my body, out of my system. The devotional always seemed to fit the day I was having. I usually ended up crying after I read the days devotional because it was like reading what I had been through that day. I told Jason about the devotional and he asked me to bring it with me. Every day we read it together. It was a special time just for us to reflect and pray, to hear God’s word and try to apply it in our lives.
 
At this point we are seven and half months from Jason’s injury date. He can pretty much take care of himself independently now and I have a lot of free time on my hands. My life is slowly going back to the way it was; I’ll be starting school again soon, I’m trying to find a good hair stylist, I’ve resumed a new workout routine. However, my life will never be what it used to be. But right now it’s in a good place and it’s taken a lot of baby steps (and pretzel M&Ms) to get here.

Wednesday, January 9, 2013

Be a Squeaky Wheel


I used to be quiet. I didn’t like to “rock the boat” or question authority. If there was something I wanted to say I kept it to myself and later regretted doing so.

My how things have changed.

Jason likes to tell people I had a reputation at Walter Reed. And maybe I did. Just a little. At the same time I do not care if I did. I believe that using my voice and speaking my mind helped him get the best care possible. Why? Because I demanded it from those taking care of him.

While in physical therapist assistant school we were taught a lot about patient care. A lot. We were taught patient rights and responsibilities, ethics, and how to see things from the patient’s point of view. The biggest lesson of all: these aren’t robots we are dealing with, they are people. Now these lessons and classes aren’t just for PTA students. Ethics and patient care classes are taught to everyone in the medical field. So imagine my surprise when sometimes Jason received less than what I learned.

It started in the ICU at Walter Reed. Jason has relatively uncommon allergy to artificial red dye. It’s not life threatening but if you’re allergic to something it’s not worth ingesting. It didn’t seem to appear in his medical records. I had to tell the doctors in Germany about it and now I was telling everyone in the ICU at Walter Reed about it. At the time Jason had a feeding tube that allowed liquids to go into his stomach, as well as take fluid out of it if needed. The liquid food they have looks like Ensure. It comes in cans with flavors like chocolate, vanilla, and various red dye containing flavors (strawberry, mixed berry, etc)

One day a nurse brought in some cans for Jason. I noticed they were strawberry and when she left the room again I checked the cans. Sure enough, red dye was an ingredient. And sure enough Jason was wearing a red allergy bracelet with his allergy listed. I politely told the nurse to get another flavor of food because he couldn’t have it and if his allergy was in the computer and in his charts. She got him a new flavor, said that his allergy wasn’t in the computer but it would be.

This went on for five days. Every day I would tell the day and night nurse about it and yet he would get red dye liquid. The straw that broke my back was on the morning of the fifth day seeing a little bit of pink liquid in his tube and a big bag of red mixed berry waiting to be hooked up. This was done by the night nurse, who I begged to not give him red dye liquids before I left to try to sleep. I had enough. I went to the nurses’ station and threw a fit. I told them I would not leave the counter until it was listed in the computer and every nurse was made aware of what happened.

We actually spoke to one of Jason’s doctors about the incident (actually, I think one of the nurses must have told him to go calm down the crazy lady yelling at the nurses station) and I told him “I shouldn’t have to tell people these things.” And he said, “You’re right, but you have to.”

You have got to speak up. If something doesn’t feel right, if you don’t like how someone is treating your loved one, if you don’t know why they are getting a procedure, if they are late giving them their medication, SAY SOMETHING. Don’t assume that they know your loved one’s chart inside and out, because they don’t. You may not be lucky to get the same nurse two times in a row or arrive when they are rotating in a new batch of scalpel wielding interns and residents (for Walter Reed it was in mid to late June)

In order to spare you from millions of paragraphs of ranting, here are some bulleted points
-When signing consents to surgeries, make sure you completely without a doubt understand what they are going to be doing and (most importantly) why they are doing it. If you can’t explain to another person the what and why of the surgery, you need to ask the surgeon.

-Read and understand the patient’s rights and responsibilities. Most likely you’ve signed paperwork saying that you’ve read them but probably haven’t. It’s a little bit different for soldiers because they are still under the command of the military, but it is still helpful to know that you can refuse treatments or medications, you can request second opinions, you can request different staff, etc. Every hospital/medical facility is a little different but they all should have copies of patient rights and responsibilities available.

-Ask questions. About everything. For me it helped to know why certain things were being done, how long he would need to be on certain medications. Being informed was also a way of coping for me.

-Don’t worry about whether or not you are “bugging” the staff or becoming a “nag”. These people are only in your life for a short while but your loved one isn’t. Who cares what they think?

-If you aren’t happy with a staff member of the hospital, say so. If I wasn’t okay with something a nurse was doing, like how they transferred Jason from the bed to chair, I would say something. Usually they never had a problem with me being nitpicky. But if you continue to have problems see if you can get another person although keep in mind they may not be able to.

-Make sure to thank the staff. I always made sure to thank every nurse, corpsman, doctor, etc who came into our room. Despite the few awful nurses and doctors we had, most were pretty awesome and we make sure to let them know. They have hard jobs and I’ll admit sometimes I didn’t make it very easy. These people deal with the aftermath of war, caring for these young men and women who have given so much. When they are doing a good job they deserve to know.

The squeaky wheel gets the grease. And I don’t think I’ll ever stop squeaking. Even today we met someone that is coming with us on our ski trip next month that had heard of me. She said, “Oh I know you! You’re the one who was pissed about them blocking all the handicap parking at the Christmas party.”

Yup that was me.

Monday, January 7, 2013

Write Down Everything

 
 
I started writing down everything after an incident that happened two days or so after Jason got hurt. When a soldier gets hurt, the spouse or next of kin gets daily phone calls from a call center in Kentucky until they are physically with the soldier. The call center people get reports from where ever the soldier is at and then reads the reports to the spouse. These people are not medically trained (they've admitted that to me) and so if you need clarification, you need to beg them to call the doctors and ask what they mean.
 
Early on the doctors were trying to save Jason's right leg. I knew there might not be hope for it considering the damage that was done. I received a call from the call center saying that they took his leg. I was devastated. Later on in the day I received a call from Jason's rear detachment and they also gave me a report from down range, but they said Jason still had his leg. I told them what I had heard and they went back to get more information. Rear D came back and said that the leg was gone. Since I needed more clarification I called the call center and demanded to know the straight answer. It turns out that he still had his leg after all.
 
It was that day that someone suggested that I write down every time the call center called, and I did exactly that. Let me tell you that writing down everything was so helpful in so many ways.
 
I wrote down the date, time, name of caller, and the general message. When I got to be with Jason I started writing down the same information, except now it was the names of his doctors, surgeons, and the surgeries he had, medications he took. I kept all the information in my infamous binder. I carted that thing with me everywhere. The picture above is me writing in it.
 
I had to refer to that binder many times. Sometimes it was for Jason. When he was more coherent he wanted to know the timeline of what happened. Instead of trying to recall from memory, I could read from my binder. Sometimes it was for the doctors. Doctors would ask when Jason had a certain procedure, or who did it, or what was done. Although you think they would have this information in his chart (I pray they did and that they were just lazy and didn't want to look it up) I could whip out my binder and tell them.
 
Also in the binder was plastic holders for business cards. From the moment I got to Germany I was handed business cards every day, from doctors to charity organizations. There were some that were more important than others and I still have all of them today. Every time we would transfer to a new place of care (Germany, Walter Reed, Balboa) the first week was chaotic. Even though I was warned about how many people we would meet, it still didn't prepare me for the amount of craziness that happened. I couldn't keep up with who we met, but at least I had their card. When I would get asked if we met so and so, I could look in the back of my binder and if I had their card I could tell them yes.
 
If you are not in the beginning stages of hospitalization, I would still recommend going through and writing down as much as you can from memory. All soldiers that get injured have to be medically boarded (med board) and although we have not started the process yet, I feel like having this medical history could be beneficial. Try to remember what surgeries your soldier had, where they were done, and who did it.
 
It can be time consuming and there were times when I was so tired I didn't want to write. But looking back I am extremely glad that I did. This is why I wanted this tip to be the first post, because I believe that strongly in writing everything. So go out, get a binder and some paper, or a notebook and write!
 


Sunday, January 6, 2013

From The Beginning

I guess in order to explain what I want to accomplish on this blog I need to start from the beginning.

In the middle of March 2012 my husband Jason would leave for his third deployment of his so far in his six years in the Army. His job always made me nervous. He was a combat engineer in the Army which involved route clearance; he and his guys clear roads and routes of improvised explosive devices (IEDs). We had been married almost three years and this would be our second deployment as a couple. The last one was a nightmare for me, twelve months of sleepless nights and constant worrying sitting by the computer waiting for him to get online to chat. But this time I felt better, more prepared, more experienced. It was still gut wrenching to say goodbye to him that early morning, but at least it was familiar.

I was finishing up my first year of physical therapist assistant school at the time. I also had a job as an aide in an outpatient physical therapy clinic, so needless to say I kept pretty busy. The communication with Jason was considerably less than his last two deployments and he himself was very busy. Even though I knew what he was doing everyday, I trusted in The Lord. He was always with Jason and since I couldn't be, it was such a comfort.

On Wednesday May 30, 2012 I was in class like normal. It was early afternoon and I was sitting in lecture taking notes. As I did with the last deployment I had my phone right next to me on vibrate. You never know when your spouse will call or come online. My phone went off and the number was an 877 number. Somehow I knew something wasn't right. I grabbed my phone and ran out of the classroom towards the outside of the building for better reception. I answered it. 

Isn't it amazing how in a second everything can change?

I don't remember exactly what he said, but a man from a call center in Kentucky told me Jason had been seriously wounded by an IED. His left arm sustained deep wounds. His right leg was severely mangled. His left leg was amputated to his hip. He was unconscious and intubated.

It's difficult to describe how I felt. Literally a million emotions, thoughts, and feelings came over me and continued to for weeks. It took three days for Jason to get stable enough to fly to Germany. The doctors were working hard to save his right leg, but before I got to him in Germany they had amputated it as well. Jason was now a bilateral hip disarticulation.

Let me pause for a moment to explain what a hip disarticulation is. It means that Jason had literally no legs at all. He has no femurs, no hip joint. He has everything from his pelvis up (and minus one finger tip) but no legs. It's a rare form of amputation and it accounts for about 2% of the amputee population of America. So far in our journey we have met/known of four other soldiers with this level of amputation.

The decision to take the right leg was a matter of life or death for Jason. He was becoming septic and there was severe tissue lost from his thigh. Even if they were able to stabilize him and keep the leg, it wouldn't be functional and hinder his possibility of being mobile. As I've told many people, I would rather have Jason here with no legs, than not have him here at all.

On June 10 we finally went to Walter Reed. June 17 he was extubated. From the entire time Jason was at Walter Reed he had close to twenty surgeries, including a skin graft on his arm, wound vac exchanges, and cleaning/debridement of his wounds. He had lots of physical and occupational therapy, lots of tests. Through only what I consider to be God's protecting hand, he only suffered a mild concussion and still to this day shows no signs of TBI or PTSD. 

This has all been a long winded way of explaining why I wanted to write this blog. From the beginning of Jason's accident I scoured the Internet for information about the level of his amputation, what to expect as both an injured soldier/spouse of an injured soldier, and so on. However I was disappointed. There was next to nothing about bilateral hip disarticulations and not enough about what to expect. Frustrated, I kept thinking since then I should start a blog.

My goal with this blog to post lessons I've learned from this experience, in hopes that it can help just even one spouse. I also hope that this blog will educate others about amputees and maybe give insight to the lives of those affected by injuries from war.

If you would like to read a more about what Jason went through from the first day of his injury to about a month ago, go to http://www.caringbridge.org/visit/jasongibson/journal

If you like to read thoughts straight from Jason himself, check out his blog at http://mylifewoundedsoldier.blogspot.com/

Thank you for reading and visiting this blog. I look forward to sharing what we've learning with you. :)