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. :)