Confused, Agitated, and Awesome

Chocolate Cake and Karaoke

2010-07-15T13:42:00.005-04:00

Drew and I had a little "night out" last Friday. We went out with my parents to the local VFW hall to sing karaoke. I must say, it is not exactly our scene, but it is way better than sitting at home.

I kept looking at Drew, wondering what was going through his head. Whenever I asked him if he was having fun, he assured me that he was. However, I imagine he was thinking, "What the hell is going on here? Why did my wife bring me out to hang with all of these old people?" Either way, he got a crab cake and a piece of chocolate cake out of the deal.

Here he is, smiling with some cake in his mouth.

Here, he is trying to tell my mother that she is crazy. I just have an awful look on my face.

Somebody decided to sing "Wonderful Tonight" by Eric Clapton. Drew has always loved this song. I decided to dance with him. He was, after all, the hottest guy in the whole joint.

Soon after that, Drew got tired. He had finally had enough of drunk senior citizens and strange, mildly offensive country music. He wrote "home" on his dry erase board. My awesome dad helped him get into the wheelchair van and took him back to his parents' house.

I Am Such A Cute Lil Puppy!

2010-07-04T21:30:00.003-04:00

I'm back, once again. I really need to be more frequent with my updates, don't I?

Before I start, I want to say that Drew is doing great! However, I really need to vent today.

Drew and I went to a 4th of July cookout with my in-laws today. I tried so hard to have a good time with Drew. He got to eat some steamed crab, which he always enjoys. I also love watching him take the pieces of crab meat from me and pop them into his mouth. Just knowing that he can EAT fills me a lot of joy. Wow! One year ago, he was still struggling to eat even a small bite of pudding.

Anyway, I started to notice that certain people at the cookout were looking at me in the same way that they would look at a sick puppy. WHY? I don't have big brown eyes or a wet nose. I do not whimper! I've got a lot going for me.

Eventually, I began to actually feel ill from so many people staring at me. Also, I decided that I really did not want to listen to country music. Drew was occupied by his iPad. So, I went for a walk and found myself a nice spot where I could be by myself. Unfortunately, it did not work.

Some distant relative, maybe she is my father-in-law's cousin, found me. She locks in on me with that, "OMG it's a sick puppy" look and starts puffing on her damned cigarette. Here is how our conversation went:

Her: So, how's life?

Me: Um, OK.

Her: You are so young! It should be great!

Me: It's OK. I am fine. *smile*

Her: You need to do things.

Me: Well, I go to school. I have a great job. I run 20 miles a week.

Her: Well, I don't mean those kinds of things...

Me: I know you mean well. But you should really stop talking to me like this. You are making me feel worse.

Her: Aw. Do you have any friends?

Me: Yes, I do. I have friends at work.

Her: Aww! But you should have more friends!

Me: Actually, I like my friends at work because those are the only ones who treat me like I am a normal person and don't pity me.

Her: Well, I didn't know you before this.

Me: Well, you certainly don't know me.

Her: I really hope that you have a life someday. I look at all I've got and then I look at all you've got, and I really feel sorry for you.

GAH! Seriously? REALLY? REALLY? I politely told her that I love my husband and that I do not need anyone but myself to have a life.

There are many things I would change about my life if I could. But I have a life that is very much worth living. I have an education, a career, and a healthy body that can run for miles straight without becoming exhausted. I am strong, physically and mentally.

More importantly, my life has substance. I know what it is like to love somebody so much that I would endure hell on earth to make him better. I have a husband who adores me and depends on me. I am so glad that I get to help him as he fights to recover from such a severe brain injury. It isn't always pretty, but it's the closest thing to a miracle that I have ever witnessed.

I am proud to say that I have a CAUSE. And Drew is doing something AMAZING. While old Pity Lady is busy puffing away on her cigs and relying on her husband and children to provide her with an identity, Drew and I will be inspiring others.

Yes, We Are Still Alive

2010-04-20T17:24:00.003-04:00

Wow. Has it really been six months since my last post? I have no legitimate excuse for my lack of updates. However, I will say that I exist in a strange time warp. The past six months have gone by so quickly. Nevertheless, each month drags on like several eternities.

I assure you that my absence is not due to lack of news. In fact, sometimes there is so much I could say that I just do not know how to summarize it in a single blog posting. This post will not even scrape the surface of the wonderful things that Drew has done lately.

Drew and I are at a new stage in our lives now. We follow a routine that is at best abnormal but is usually stressful and sometimes heart-wrenching. Drew is out of the rehabilitation hospital and living at home with his parents. His daily routine includes re-learning how to do all of the things that we take for granted, such as washing, dressing, and eating. My routine includes working full time, going to school, and visiting Drew every day.

As always, our lives are full of ups and downs. Some days, I am genuinely confused about how my life ended up this way. It's like I could swear that two seconds ago Drew and I were living our happy, perfect, yuppie lives and all of a sudden we were catapulted into some strange, indie film version of hell. I am sure that Drew would echo this sentiment one hundred times over.

Still, there are days when I marvel at the miracle that I am witnessing. Drew continues to improve every day. We still have light years to travel, but I am confident that he will eventually return to a good quality of life. As he recovers more and more, his spark and willingness to make himself better become more evident. I will continue to fight with him.

I plan to update more within the next few days. I look forward to sharing specific stories about this stage of Drew's recovery. He continues to surprise and inspire me. I want the whole world to know how awesome he is.

They Put Drew in a Cage

2009-10-11T00:22:00.002-04:00

Literally (no, not figuratively). I am quite serious.

Just one week ago, Drew was found with his body half way out of bed. So, they gave him a bed that would go all the way down to the floor.

Now, it seems that Drew is learning to grab the bed rails and lift himself up. Apparently, they found him trying to sit up yesterday morning.

So, the powers that be at USH decided to put Drew in a special cage bed. I understand that it is necessary. We want him to be able to move around in bed without being at risk of hurting himself.

It is actually very common for TBI patients to be placed into this type of bed while they are "coming to." Right now, Drew's main focus is most likely on how to "free himself." He does not care too much about his safety. Most patients do not need these beds permanently. In many patients this is a signal of progress. It means that Drew is gaining mobility.

Still, it made me sad to see him in it. He seemed terribly confused. The nurse told him that it is a "thumbs up" bed. Drew was not convinced. I asked him whether or not he thought the bed was cool. Of course, he said no.

The world of TBI is so wonderful. Figuratively (not literally).

Looking Hot

2009-09-28T23:04:00.003-04:00

Drew has been looking great lately! We were looking in the mirror today, and I asked him whether or not he thinks he looks hot. He did a quick thumbs up. Of course he does!

Below is a picture of our favorite miracle man wearing his "I HATE DUKE" shirt. As you can see, his posture has improved so much in the past month. He is now able to hold his head up straight. Recently, he has also started propping himself up in the chair.

Also, I have a quick story that I need to share. For awhile, I was a bit concerned that Drew would wake up and expect me to be some major domestic diva. When he was in a deep coma, I made many bold statements, such as, "Drew, as soon as you are able to eat, I will cook you a hamburger." For a vegetarian, this is quite a serious undertaking. Actually, I gag every time I look at raw meat and even some times when I look at cooked meat. So, I have secretly been hoping that he will not expect me to do this all the time.

Anyway, I asked him yesterday whether or not be believes that I will actually cook the hamburger. He made an unusual hand gesture--I assume this means that he thinks the idea of me cooking hamburger is very silly. I decided to probe him further, so I asked him, "Drew, would you rather have me or your dad cook for you?" He *immediately* pointed to his dad. In case you are wondering, Drew's dad is the greatest cook in Essex--I think he is even better than Pizza John. It should have been a no-brainer, but I just wanted to check.

So, good answer Drew!

I Don't Have a Cute Title -- But I Wanted to Post Something

2009-09-24T00:14:00.004-04:00

I am so lazy! Actually, I am just very busy. I recently went back to school. I am so glad I made this decision, but it does take away from my blog writing time.

Drew's parents and I are also aggressively preparing for Drew to come home next month. We have a lot of work to do to make sure that the transition is successful. It is all very overwhelming at this point, but I know that it is the best for Drew.

There is a lot I could say about Drew. Actually, writing these updates is quite a daunting task, considering that Drew is continuously making small but noticeable gains in a variety of areas. Of course, I am not complaining!

I will try to highlight some of the recent developments:

First, I want to mention that Drew and I had our anniversary on September 9th. Last year, of course, Drew was lying in STC with his fists clenched and his eyes closed. Our two year anniversary was actually the day that I was told by four doctors that Drew would remain in a permanent vegetative state. However, this year I was blessed with many reminders that doctors are blockheads and that Drew and I are on our way to a better life.

A few days before our anniversary, my mother whispered something into Drew's ear. He then proceeded to look at me and point. Apparently, she had asked him if he wanted her to buy flowers for me. Well, she did, and she also bought a card for him to give me--and to sign. Yes, he was actually able to sign the card himself! His dad wrote out the words for him, and he copied them. He wrote "Love, Drew" on the inside and my name on the outside. It looks like a kindergarten child wrote it, but it is legible! I thanked him about fifteen times and then started making plans for our future anniversaries. We decided that next year we will do something nice at home with Drew's parents. Then, the year after we will go out somewhere downtown, like we used to do. He agreed--I got thumbs up all over the place.

Again, Drew has been slowly improving in virtually all areas. His PT is working hard to help him learn to sit up straight and to keep his head up straight. We have seen improvements in posture in just the past few weeks. His PT is also working on helping Drew increase mobility of his legs. Drew *always* throws his legs off of the bed now--he even throws them over the bed rail. At one point, I got yelled at by a head nurse because she thought I was being delusional and throwing his legs off of the bed myself and then just leaving him to lie there all helpless. I have to admit, I used to do this! I used to put Drew's legs off the bed and then command him to put them back on the bed. I always knew he could do it. And now he can. Now, of course, we are trying to get Drew to do more bending of his legs on his own. It will come--I just have to torture him some more. Hah.

Drew is also doing well with OT. They have been working on re-learning Activities of Daily Living, such as washing, brushing teeth, etc. Once Drew gets home, I will walk him through this routine every single day until he is completely independent. Currently, he seems to have trouble with getting stuck on certain parts of an activity. This is a common trait of patients at his current Rancho level (5) and will subside as he progresses further. Also, he is still severely limited by the fact that his left arm does not bend. However, we will be able to get an operation to repair this eventually.

As far as SLP goes, Drew is working very very hard to learn to swallow again. He finally has regained a functional swallow, but he can only swallow about eight sips of liquid before his throat muscles become overworked and start to twitch. His therapist is 90% sure that he is able to swallow without any liquid going into his lungs. If he continues to do well, Drew will move on to eating applesauce. The other day I asked Drew if he believes he will be eating solid food soon. I got a very immediate and enthusiastic thumbs up. I believe him, too. Drew has a long way to go with this, but I love his positive attitude!

Regarding actual speech, we have seen very little progression. However, the therapists are working on helping Drew to communicate in other ways while the speech neurons are busy sorting themselves out. Drew is now able to communicate yes and no via head nods. Drew has learned some basic sign language. Also, Drew is being trained to use the Dynavox computer. A woman evaluated him a few weeks ago and was very impressed with his ability to operate the machine. The fact that Drew is able to use this at this point speaks volumes about his current cognitive ability and his potential to make a full cognitive recovery.

In general, Drew is doing very well on a cognitive level. He shows evidence that his short term memory is returning, he answers questions correctly, he is able to identify letters and words, he exhibits problem solving ability, and he communicates consistently. Unfortunately, we are seeing that Drew has some very serious physical deficits. He is not paralyzed, but some of his muscles have not woken up yet. While it is frustrating to watch, I am not worried. There are a lot of therapies for this type of problem. Many patients are able to overcome such deficits.

I would rather have my husband functioning fully on a cognitive level but confined to a wheelchair than the other way around. While Drew was still in a deep coma, I read several horror stories about patients who woke from their comas and regained mobility but were never able to even remember their family members. I have witnessed several patients like this at USH. One man appeared completely normal, but he thought he was at USH to inspect the building. He would always grab the visitor sign-in sheet and say, "You are interrupting my work!" He was serious. It is tragic.

Drew, on the other hand, appears to have a pretty good grasp of who he is and what is going on around him. I don't think he understands what has happened to him just yet, but that will come in time. In the meantime, it means so much to me to know that Drew still knows who I am and that he still loves me. He hugs me, kisses me, and signs "I love you." If you ask him who he is married to, he points to me without a second thought. He also loves to point to me, motion "come here" with his hand, or point for me to get into the bed with him. It is truly amazing that even catastrophic TBI could not destroy the bond that we have.

525600 Minutes

2009-08-28T23:50:00.004-04:00

Today is the one-year anniversary of the accident. I have been thinking about and preparing for this day for months. I thought I knew what I was going to write. The day is finally here, yet I am mostly at a loss for words.

I think the problem is that I have mixed feelings about the whole situation right now. I am thrilled beyond words that Drew is finally out of the coma. When I sit back and really think about it, I am overcome by this feeling that can only be described as, "Wow."

At this point, every day is a new and exciting day with Drew. He consistently amazes me. I feel honored to be a part of his incredible recovery. Heck, I am proud just to be his wife! While we still have a long way to go, I am confident that Drew will continue to move forward in every way. Drew will be another TBI success story--a testament to the power of the human spirit, an example of what can be achieved with love and determination, and a ray of hope to help other families who must fight against doctors who insist on prematurely forcing a dire prognosis on a patient.

While I have great expectations about what the future will bring for me and Drew, I have a lingering feeling of anger and bitterness. I'm sorry, but I have to do this, or I'll never be able to sleep tonight.

*Begin Fictitious Letter to CM*

CM, if you are out there, and if you can actually read, I want you to know that I still hate you. You hurt a beautiful human being. Because of you, one productive, valuable member of society has spent almost a year in a coma, and another has spent months incapacitated by grief, so depressed that she almost committed suicide.

By the way, what have *you* done in the past year? Oh, never mind, I know already. You've sold drugs, purchased weapons, and squandered thousands of dollars to pay a lawyer to keep your worthless ass out of jail. Here's a tip: learn how to behave, get a job, and go volunteer some of your time at a TBI rehabilitation facility. Do you realize what you have done? Can you even conceive of ten percent of the pain that you have caused?

Yes, *I* am feeling better now, but for Drew, the hardship is just beginning. I have had an entire year to process the situation and adapt. Drew is just now waking up to this awful nightmare that *YOU* caused. When I see him struggling to speak, take a sip of soda, or push the buttons on the television remote, it is difficult for me to not think of you. Actually, when I am lying alone in my bed at night, it is hard for me to not think of you. It is awful. I have never seen your face, yet your dark shadow follows me wherever I go.

CM, I could go on and on about my hatred for you. I could write a ten thousand page essay about how pathetic you are. But, maybe I just need to forget about you. I wish I could. I am going to try.

Please, clean up your act. Try to contribute something useful to the world. Do not ruin anymore lives. The next person you hurt may not be as resilient as my husband and I are.

That is all. I am finished.

*Begin Fictitious Letter to CM*

Ok, that was therapeutic. As you can see, I walk around with a lot of anger upon my shoulders. Some of it is directed towards CM. Some of it is directed towards God. Some of it is directed at happy strangers walking hand-in-hand on the street. I'm working on it, though. I have not had a public outburst for over two months.

Now, back to Drew. Drew is awesome, Drew is good. Drew is a miracle man. I know that Drew and I will make something good out of this situation. His progress in the next year will be SUPER AMAZING. I am serious. Wait and see!!

It's Official!

2009-08-28T13:19:00.003-04:00

Just a quick note.

Drew was re-evaluated by Speech Therapy yesterday. The bad news is that he does not yet have good enough tongue control to pass the swallow test. The good news is this:

Drew's swallow has improved since his last evaluation.
Drew's cognition has significantly improved since his last evaluation - he is now officially performing at above coma level, according to the speech therapist.
Drew will now begin receiving speech therapy again. The speech therapist is going to recommend him for PT and OT as well.

Drew is officially out of coma! He has emerged from minimally conscious state and now has great rehabilitation potential. I have suspected this for weeks now, but it is wonderful to have a professional finally recognize it. We are still moving ahead at full speed to prepare to bring Drew home. However, now it will be much easier for us to get Medicaid to cover outpatient rehabilitation services for Drew.

Forward, forward, forward...

Learning to Swallow

2009-08-26T23:14:00.005-04:00

Drew went to Shock Trauma today to have an MRI done on his knee. For some reason, the wound he received on the day of the accident, which almost caused his leg to have to be amputated, has never really healed. While Drew has a remarkable level of control over this leg, there is always a huge scab on the knee that should have gone away by now. While most likely there is nothing seriously wrong, we thought it would be a good idea to check into this before making the big move home.

Apparently, Drew would not sit still for the MRI. I heard that he was fascinated by the equipment and kept trying to reach up and touch it. Thank goodness that Drew's mom was there. She went in with him and helped him to hold still--so the doctors did not have to sedate him.

In other news, the nurses at USH have all been buzzing about how much progress Drew is making. The rehabilitation team is interested in seeing Drew again. They are going to do another swallow test sometime soon. I am nervous for Drew. He last had a swallow test in May, and he did not even swallow. I thought he was ready then, but he wasn't.

I have to admit that he seems more ready now. I think that he may have been trying to tell me this last night. See, I have been working with him myself for the past few months. Usually, I allow him to drink a small amount of liquid, then I place my finger on his adam's apple and wait for a swallow. Last night, I gave him some coke and then placed my fingers in the usual spot. To my surprise, he swallowed very quickly and then proceeded to use his right hand to push my finger away from his neck! I love the sassiness, I really do.

New Movements

2009-08-25T00:15:00.000-04:00

Drew is recovering in new ways every day! Tonight, I witnessed two new behaviors:

1. Drew was able to open and close his mouth on command twice. He did not close his mouth all the way, but I am still excited. I have asked him to do this every other day for at least the past two weeks, and until now I got no response. This is the first step to overcoming the oral-motor apraxia. I can't wait to see what happens next. Tongue movement? Talking? Yes and yes.

2. Drew lifted his left arm on command. As most of you know, Drew's left arm was broken in the accident and has been immobile. Within the past two weeks, he has been able to push down with the arm when I hold it up for him, and he has also been able to move it a few inches to each side. However, he has never been able to lift it off the bed...until now.

How did I get him to do it? I wanted to put a pillow under the arm. So, I just very casually asked him, and he did it instantly, and effortlessly. I have a habit of asking Drew to do things whether or not I really expect him to do it. Before I move any body part for him, I first check in with him and see if he would rather do it himself. This practice has proven to be effective, as he has surprised me several times. Tonight, I nearly fell over myself in excitement when he did this. I was jumping up and down, yelling "Wow, wow, wow, wowww!!" He just sort of looked at me funny. I don't think he understands how great this is.

Anyway, I just had to share these awesome developments. Look out Look out!! We are on our way.

Cuties

2009-08-24T13:02:00.009-04:00

I apologize for lack of updates. I assure you that it is not because of lack of news. I have been awfully busy with work for the past few weeks, and I devote all of my extra time to helping Drew reach his full awesomeness potential.

Molly came to visit Drew again over the weekend. Drew has been becoming more emotional lately -- probably as a result of becoming more self-aware. However, he always seems very happy to see his niece.

Now for the cuteness - Don't say I didn't warn you.

Drew and Molly love to hold hands. They are both looking at the camera! Also, notice that Drew has a one-eyed monster sitting on his chest that resembles something one might buy at Love Craft. Don't worry--there is no need to have a dirty mind. This is one of Molly's "Yo Gabba Gabba" toys. His name is Muno. I'm not sure whether or not Drew likes it, but I keep thinking that maybe it reminds him of our one-eyed cat. We'll have to ask him. Yesterday, I asked him how many months it will be until he talks. The response? Two fingers. I can live with that.

And here are a few of Drew and Molly playing with the "Yo Gabba Gabba" umbrella:

Finally, we gave Drew the camera and let him take a picture of me.

Not too bad for a man who was in a coma for 11 months.

Kiss Me, You Fool

2009-08-17T00:40:00.003-04:00

Drew had a great weekend. There is so much to say.

I have to start by writing about the new and interesting ways in which Drew is trying to communicate with us. He did the cutest thing today. When I got to the rehab center to see him today, the first thing he did was put his finger up to his mouth. "What are you saying," I asked Drew. "Do you want to brush your teeth?" He then grabbed my hand and put my hand to his mouth. I then asked, "Oh, you want me to kiss you?" *Thumbs Up* Awww, I love him so much.

I also want to mention that Drew received a visit from his niece and god-daughter, Molly, today. I think both of them enjoyed it! I am so proud of them both. I was a bit worried that two-year-old Molly would cry and be afraid of Drew; however, she took it like a champ. She held "uncie Dew's" hand, hugged him, kissed him, played ball with him, and gave him flowers and make-pretend stars. She said a prayer for him and said "I love you Uncie Dew."

Drew stayed wide-awake during the entire visit. He watched Molly intently. He did such a great job playing ball with her. He even scratched Molly's "squito bites" for her. Oh, and I can't forget to mention that he gave Molly and me a very enthusiastic thumbs up when we danced for him! I am sure that he was smiling fiercely on the inside, even if he cannot show it yet.

That brings me to my negative point for the day. I have been doing some research lately trying to figure out how I can help Drew learn to talk. Drew and I recently shook hands on a one month deal, and I want to do everything I can to help him meet this goal.

Anyway, during my research I realized that Drew has something called "oral motor apraxia." This basically means: the inability to make voluntary movements with the mouth and tongue. Within the past month, he has been able to use limb movements to show us that he is now fully aware. Unfortunately, I have yet to see him stick his tongue out on command. Also, he only smiles faintly. He can open his mouth to put food or a toothbrush inside, but he never just opens his mouth on command. His behavior fits the symptoms of apraxia frighteningly well.

Now, this certainly does not mean that this will be a permanent problem. Most likely, it is not permanent. I have to remember that just five months ago, Drew's mouth was practically sealed shut. He only started opening his mouth for food and toothbrush less than two months ago. Brain injury is strange. Sometimes, symptoms just seem to resolve themselves overnight. Other times, symptoms resolve themselves slowly over time with many hours of therapy.

I plan to drill Drew until these problems are resolved. He will talk! Whether it happens next month or next year, he will. Doctors have told me that the one year mark is late in a patient's recovery. Research has taught me that one year is actually quite early in the recovery timeline--especially with a severe diffuse axonal injury. Many patients with such injuries are just starting to recover at the one year point. Many of these patients also go on to make substantial, amazing recoveries over the next two, three, or even five years. Drew falls into this category--I am certain. I just need to keep pushing him.

So far, Drew and I have been doing tongue exercises with lemon glycerine swabs. Drew hates the taste of these, and I can understand, as he usually ends up sticking them in my mouth once he gets fed up with working. Through my research, I just got the idea to start using tongue depressors instead. I also just read that teethers (yes, the ones they make for babies) can help. I bought Drew a vibrating teether and a "sensory stimulation" teether with all kinds of strange textures. Supposedly, these things have helped children with apraxia. I hope Drew isn't offended by this! I guess it is better than lemon glycerine swabs.

Anyway, I am so determined to help him talk. I want to hear his voice, damn it! I want to hear him say, "Kiss me, you fool" like he used to do. The cute sign language will work for now...but come on, honey, talk to me!

Drew Harassed His Grandmom

2009-08-14T00:15:00.004-04:00

Drew is still doing well. I certainly have a lot I could write about, as he always seems to be doing something new.

The reason why I have not been writing has nothing to do with Drew. I have just been extremely busy.

Drew is very slowly but surely moving towards recovery. He is now consistently responsive. He has even been responding to the nurses and family members of other patients. Just over a month ago, Drew would very rarely respond to strangers. Now, he will respond to anybody who approaches him with a positive attitude!

Drew also continues to show that his short-term memory is re-developing. For the past week and a half, we have been urging Drew to harass his grandmother by grabbing her nose. Now, you may think, "Oh, how mean...how awful!" But, you see, grandmom likes to play with Drew's toes. Grown men don't really like it when people mess with their toes, and poor Drew has been defenseless against the almighty "This little piggie went to the market"...until now.

Last week, we had to prompt Drew to grab grandmom's nose by saying "What are you supposed to do to grandmom's nose?" I thought it was cool when he did that, but I was secretly hoping that he would just "harass" grandmom without being asked. Well, he did just that tonight! I was so excited to hear about this.

Drew is doing great! He is awake, he is alert, and he is with us!

Cheating Our Way to Recovery

2009-08-03T22:49:00.002-04:00

We are still moving along. Every day is a good day for Drew! Yesterday, I noticed another exciting improvement.

I was doing passive range of motion on Drew's left arm, which he still cannot lift on his own. I asked him to try to lift the arm. He seemed to try, but he could only lift his hand. So, I asked him, "Show me how you cheat." If you read Friday's entry, you'll know that a few days ago I taught Drew to "cheat" by using his right arm to pick his left arm up.

Well, he remembered! He did it with no visual cues. The fact that he remembers something that I showed him two days ago is huge. This means that his short term memory is returning. Of course, this will greatly aid Drew on his quest to relearn and recover.

Why Does TBI Always Feel Like a Battlefield?

2009-07-31T22:06:00.005-04:00

I guess I better go and get my armor...

Holy smokes, who knew Jordin Sparks was such a freakin' genius?

I swear, I get *so* tired of fighting every single day. Take today as an example:

1. I was nearly eaten alive by software bugs.

2. My looks continued to be devoured by eye wrinkles.

3. Another woman in a white coat came to yell at me.

So, what do I do? I fight right back. I smash the bugs with my awesome coding skills! I apply my wrinkle cream religiously! And, most importantly, I tell the women in the white coats where they can go...

Now, on a more serious note, I will actually explain who these white-coated woman are. These woman are USH employees, head nurses of sorts. On one occasion, one of them referred to herself as a patient advocate. Hah. Hah. In my opinion, these women are like second grade hall monitors. They like to peek into patients' rooms to make sure that families are behaving themselves.

A few weeks ago, one of them came in to tell me that I am not allowed to get into Drew's bed with him. Last night, she came in again to check on me. Ok, yeah, this is fine...except for the fact that the room was filthy and Drew's night time feeding was two hours late at the time. Drew's room is almost always filthy. I need to remind the nurses to feed Drew way more times than I am comfortable with. Do these people really think they are advocating for Drew? If so, they are delusional.

So, what did I get yelled at for today? I let Drew have a little bit of chocolate milkshake. I was caught! OMG OMG!@#@$?!!

I have been working with Drew on tongue control and swallowing for a couple of weeks now. His speech therapist gave up on him because Drew could not learn to eat an entire container of apple sauce in three weeks. She trained me to pick up the slack. I work with Drew patiently. As I wrote before, I have seen progress. I made it clear to the woman in the white coat that I refuse to stop.

I swear, I hate the "system." The American rehabilitation and medical system sets patients like Drew up for failure. It is bad enough that therapists give up on patients. Now, they want me to do the same!

Ok, so I understand the risk of aspiration, but please understand that I have no choice. When I weigh aspiration on one side and Drew being fed via tube for the rest of his life, it is not hard for me to make that choice. Someone has to work with him, or he will never get better. It is completely asinine to me that insurance companies will pay for Drew to lie in a bed and consume resources for the rest of his life, but they will not pay for him to receive two years worth of therapy that will help him to actually get better and be able to take care of himself. My biggest fear is not aspiration. My biggest fear is a life of misery--for both me and Drew.

To be fair, we have recently had a couple of nurses notice the progress that Drew is making and offer to make a recommendation for Drew to start getting therapy again. However, I am hesitant. I don't want their desire for quick results to cause Drew to regress. What are we going to get, another two weeks for Drew to eat an entire container of pudding? And then, another month to start eating steak dinners? Please excuse the hyperbole, but the whole idea of it just worries me. I also realize that the therapists do not call all the shots--they have insurance companies to answer to. Here we go again, the SYSTEM is evil.

Don't worry about us though. Andrew Hagan is AWEEESOMEEE, and we are catching it all on tape so that we have proof to battle the women in the white coats.

Drew had the best teeth brushing session today! He not only put the brush in his mouth, he stuck it far back in his mouth and moved the brush around! He also periodically took the brush out of his mouth, dipped it in water, and put it back, without me asking. He outdid himself today. We have only been working on teeth brushing for two and a half weeks, and he is making progress!

Drew also started moving his fingers on his left hand today. He was able to move them a tiny bit before, but I saw the most dramatic movement tonight. I am trying to get Drew to become aware of the left side of his body so that we can avoid left side neglect as much as possible. He is making progress with this. I tried to get Drew to lift his left arm today. He seemed to try so hard but could not quite do it. So, I told him that he could cheat by grabbing his left arm with his right hand and lifting. He did it. I then lifted his left arm for him and then asked him to lift his own left arm a second time. He went ahead and tried to cheat. It was quite cute. He has also been taking his right hand over to his left hand and trying to remove the ergonomic stress toy that we keep in the left hand to avoid finger contractures. We have been doing this for months, and he has only just recently started to notice.

Drew has done so many amazing things in the past week. I could write about it forever and ever. He outdoes himself almost every day. He does almost everything I tell him to do, and he is learning!

And I am fighting...like "Yoshimi Battles the Pink Robots"

The evil-natured [women in white coats]...

They're programmed to destroy us...

I gotta be strong to fight them...

so I'm taking lots of vitamins!

...

'Cause I know it'd be tragic if the evil [women in white coats] win...

Drew knows I can beat them...

I won't let TBI eat him...

That is my own adaptation of the song by The Flaming Lips. It's awesome. The story of my life : ).

Making It Work

2009-07-25T23:07:00.003-04:00

Drew is still doing great! He is more alert now than ever. With each passing day, he surprises us more and more by doing new things.

I am especially happy to report that Drew had a neurology appointment on Friday, and it actually went well. Early last month, Drew's neurologist at USH was worried that Drew was experiencing uncontrollable seizure activity. She was recommending that Drew undergo a 24-hour sleep study and possibly spend more time at Shock Trauma under observation. She also said that Drew would have to be on pretty heavy seizure medications if nothing else could get his brain waves under control.

Needless to say, the thought of Drew having another inpatient stay at Shock Trauma horrifies me. Leave it to that awful place to break Drew's stride. If I hear the word reflex one more time, I will vomit. I also hate the idea of Drew being doped up on medication.

Anyway, all of the strange symptoms that Drew was displaying throughout March, April, May, and June magically disappeared at the beginning of this month. Subsequently, Drew's responsiveness has soared. I think this happened as a result of medication change. My theory is that the Ritalin (sp?) that Drew had been taking since February was wreaking havoc on his central nervous system. Now, Drew is only on Amantadine as a neurostimulant, and it works very well for him without sending him into overdrive.

So, the doctor that saw him at Shock Trauma seemed impressed at how alert Drew was. He also said that he did not see any reason for us to be concerned about Drew having seizures, and this is a doctor who specializes in seizure disorders. He recommended that Drew NOT be put on additional seizure medication and that we just continue to do what we are doing so that Drew can continue to EMERGE, which he definitely seems to be doing!

So, the funny thing is that Drew has been doing so much lately that I cannot possibly write about all of it. Most neurologists will tell you that the most dramatic recovery after a TBI occurs within the first three to six months post-injury. *Psst*...IT IS NOT ALWAYS TRUE. In July, the 11th month after Drew's injury, we have seen the most dramatic recovery in Drew *so far.* He has gone from inconsistently following simple commands to consistently following complex commands and attempting to carry out multi-step processes. It is breathtaking and simply amazing.

One awesome thing that Drew did today that I would like to share is that he took a sip of iced tea and a sip of Sprite. He swallowed both. He was also able to bring both bottles to his mouth, open his mouth, and tilt the bottles to get the liquid out. We only had to provide minimal assistance.

One thing that pleases me so much is that Drew kept trying to drink after a few failed attempts. With all activities, he now displays much more tenacity and desire to "make it work." He used to attempt a lot of activities but would almost never follow through. This is one of the hallmarks of patients in a minimally conscious state--their brains cannot function sufficiently to carry out activities. Unfortunately, information gets lost amidst broken neural pathways, and attempts at action in minimally conscious patients are halted.

I used to be afraid that Drew may not ever overcome this. Of course, I always told him that he would and that he could do absolutely anything. Now, I see Drew overcoming his broken neural pathways on a daily basis. I am excited!

More Progress!

2009-07-24T00:05:00.002-04:00

I don't have time to think of anything quirky to say tonight, but I wanted to share something with you all.

Tonight, Drew did something new that he has never done before. He traced letters! This is another thing that I have been trying to get him to do since April.

Whenever I asked him to trace my letters before, he would just make a random scribble or drop the marker. Tonight, he traced his name, letter by letter. Then, he traced my name. I will admit that it looks like a 4-year-old did it, but it was very obvious that he knew what he was doing and that he was trying very hard. His W looked especially awesome : ).

I am so excited. I must say, it is very rewarding to watch Drew do these types of things. My efforts are paying off! More importantly, Drew's efforts are paying off!

Drew + Emily = Awesome

2009-07-22T15:08:00.003-04:00

I...am...BACK. Drew is now officially out of the "funk" that he was in throughout much of May, June, and early July. He is alert and making progress again! His vital signs are perfect. No sweating! No storming!

There is so much to say! I know that I won't get to it all right now, but here goes nothing.

Drew knows his Calculus! Well, sort of. I was able to engage him in some addition problem solving last night. I would hold up two cards and ask him something like, "Which one equals 2?" He would quickly scan the cards with his eyes then grab the correct one with little hesitation. He got 3/5 correct right away. The 4th one he got correct on the 2nd try. For the 5th one, he didn't seem to be paying attention. Nevertheless, this is HUGE.

I bought the addition flash cards back in March, but I could not get Drew to do anything with them until last night. Yes, I realize that it is just simple addition. But, this is a man who less than a year ago had a prognosis of Permanent Vegetative State. Hah. We will work up to Calculus. Wait and see.

In general, Drew seems much more aware of his environment now. I would guess that he understands about 80% of what I say to him. I am now able to guilt trip him into doing therapy. For example, I try to work on his motor skills as well as his cognitive skills by handing him the flash cards as we finish with them and asking him to stack them for me. He stacked a couple of them, then I stacked a couple. I then asked him to grab the last one, which was sitting on his chest, and complete the stack. He tried once, but his fingers could not get a hold of it, so he gave up. I asked him to try again, and he just stared at me. I asked again--nothing. Then I declared, "Drew, I am going to cry if you don't do this!" He tried again! Is it wrong for me to use these methods? Eh. If it works, who cares?

Lately, I have started working on Drew's tongue and mouth skills full force. He still has little to no control over his tongue, but I swear I will help him fix that. Drew's former speech therapist showed me some tongue exercises I can do using a lemon cotton swab. I have also been rubbing peanut butter on his tongue. When I ask him if it tastes good, he gives me a thumbs up.

Drew's mouth skills have drastically improved over the past month. He can now open his mouth on command and keep his mouth open while I swab his tongue or brush his teeth (for the longest time, we could not even pry his mouth open). He also helps with the teeth brushing. He dips the toothbrush in the mouthwash for me, and then puts the toothbrush in his mouth. I have been singing this song from "Yo Gabba Gabba" (the most awesome kids show, seriously) to him. It goes, "It's fun to brush your teeth! It's fun to brush your teeth!" When I do this, his eyes open wide and he gives me a funny look. It seems like the message is getting through.

There's a lot more that I could post. However, being a full time software developer and, more importantly, *AWESOME TBI THERAPIST*, really keeps a woman busy!

I will keep posting though, because I am so so proud of Drew. Recently, I get the sense that he is more limited by his motor skills than his cognitive ability, which makes sense considering that the bulk of his injury is in the part of the brain stem that allows the brain to send messages to the body to tell it to move. The good news is that this can all be overcome, with patience and persistence. The bad news is that it will require Drew to work. So far, he is working very hard.

(Almost) Just Another Day

2009-06-16T13:12:00.002-04:00

No, I am not "returning." I just wanted to say that today is Drew's birthday.

Send him some happy thoughts! Next year, he will invite you to his birthday party, and you will be required to bring presents.

Just a warning.

Taking a Break

2009-06-07T19:23:00.002-04:00

Hello Everyone.

This is a difficult post to write. I will keep it short.

I am taking a break from updating the blog for a short time. I am not sure how long it will be.

Drew is fine. He is moving along nicely.

I am not fine. The stress of the past nine months is finally starting to catch up with me and break me down. I am finding that as time goes by I am less and less able to perform the mental gymnastics required to keep myself sane.

Maybe I am crazy. Perhaps I am weak. All I can say is, if you would like to spend nine months in my shoes and then counsel me on how to deal with the situation, I would welcome any constructive criticism.

I am doing what I need to do to help myself so that I can help Drew. However, I do not want to share this part of my journey with the world.

Please continue to keep Drew in your thoughts and prayers. Again, he is doing wonderfully. I intend to keep it that way; thus, I need to take care of myself so that I can continue to help him.

The Doctor Appreciation Post

2009-06-01T13:09:00.004-04:00

I wanted to let you all know that Drew is doing well. He is 100% back on track.

His neurostorms are for the most part under control. He is alert. He is working hard!

Every day last week was a good day. I don't think we have ever had an entire week straight of good, awake days. Drew still takes naps throughout the day, but his periods of wakefulness are increasing dramatically.

Drew's leg movement has improved so much lately. He is now able to lift both legs off of the bed about eight inches, and he does this on command. He is also getting better at kicking his legs while sitting in the chair. He responds more quickly now, and the movements are more fluid. Drew has to try harder to get the left leg to move, but we are working on that. Yesterday, as he was lifting his left leg, I kept reminding him to keep the right leg still and only move the left leg. Each time I would do this, he would jerk the right leg back. It was obvious that he was trying so hard to keep the right leg still! He knows what he has to do. With "coma" patients, that is half the battle.

We have been noticing some other exciting new movements lately. Yesterday, we had Drew sitting up in the chair with his feet on the floor. He kept pushing his right foot onto the floor so that his body would push up off of the chair. We think that this was a deliberate attempt to get out of the chair.

Drew has also been moving his trunk more. He is starting to push his behind up off of the bed. He has become a lot more squirmy. The downside to this is that we are unable to keep him in a comfortable position for more than ten minutes when he is awake. However, I must say it is awesome to see him moving around so much!

I still remember just two weeks after the accident. The doctors told us that Drew would most likely never be able to move a finger, much less an arm or a leg. OMG. I can't even stand to relive that moment.

Nine months ago, I was inclined to believe anything that a doctor told me. Now, I realize that doctors are merely humans who happened to go to medical school. They don't know everything, and instead of admitting what they don't know and risking the appearance of incompetency, they just allow cow dung to spew out of their mouths. All successful people do this--I have done it at times. So, I don't hate you, doctors! Just don't expect me to take you seriously, ever.

I continue to believe that Drew's recovery does not stop here. He will talk. He will walk. I do not ask doctors for their opinions on what the final outcome will be. They really don't know. Most of them never follow up on patients beyond six months post injury.

So yeah, I don't believe in doctors. Come to think of it, I don't believe in much of anything these days. I do, however, have ultimate faith in my husband. Drew shows us every day that he has the strong will that is necessary to recover from his injury. I have the determination to help him make it happen.

First Post-Accident Picture

2009-05-22T13:34:00.006-04:00

Actually, the title is a blatant lie. Not long after the accident, there were several pictures taken of Drew and the family for legal purposes. At the time, Drew was still in a vegetative state. I don't wish to post any of those pictures.

This is the first post-accident picture that I have been willing to share. And even this, I was hesitant to post.

I do not think Drew wants people to see this. He does not want anyone to see him wearing the moons and stars gown.

I do not particularly want people to see the "new" me. Within the past eight months, I have become visibly more stressed out. I rarely wear makeup anymore. I have gained five pounds. But whatever, I figured it was time to let the cat out of the bag and start posting pictures.

I will start posting more pictures (pre- and post- accident) soon, as I think it will help people to know us better and make the blog look less boring.

AOL is Magic!

2009-05-20T15:45:00.004-04:00

I am sitting here at work, getting ready to cry. Why do I continue to do this?

I had a very frustrating dream this morning. It was one of my usual "zOMG Where is Drew I Miss Him?!??!!" type of dreams. This one, for whatever reason, was the most annoying and depressing one that I have had so far.

In the dream, I could not find Drew. I had not spoken to Drew for months, and he seemingly had just dropped out of my life for no reason. What makes this dream any different from reality? Um, America Online?!

You see, in this dream, I had a method of communicating with Drew. I was able to communicate with Drew via a magical America Online internet connection. For those of you who have never experienced the bliss of having America Online (AOL) as an Internet Service Provider, let me tell you that there is a VERY good reason why people began referring to it as AO-Hell.

My magical AOL connection only worked if I concentrated hard enough. Any interruption in my concentration led to the AOL application freezing and my internet connection going down the toilet. Of course, all of you former AOL users know that once the AOL application quits, it takes one hundred years to reload and reconnect to the internet.

So, in the dream, Drew would sporadically send e-mails to my AOL account. They would say things like, "Honey, I still love you, but I was out with my friends last night." Or, "I am just too busy to see you, so I send one e-mail a month to you via America Online." Of course, I would always get the e-mails two weeks late because my magical AOL connection was lame and never worked correctly. I was extremely, out-of-this-world kind of frustrated in the dream!

It makes no sense. But really, does anything in my actual life make sense? Nope. Didn't think so.

What would a dream dictionary have to say about this? Besides the fact that this dream exposes my undercover computer geek personality, I think it has something to do with my desperation to communicate with my husband again. Dreams like this also address the huge, sudden void that Drew's absence has left in my life.

Yes, I know that I still have Drew. I also know that there is a very good chance that I will be able to communicate with him again in the near future. However, I have a hard time getting over the fact that the most important relationship in my life was destroyed overnight, without warning.

I do not remember the last time that Drew and I kissed. I do not remember the last real conversation that we had. The last conversation that I remember having with Drew on the day before the accident was something about how 2008 had sucked and how 2009 would be a better year. That is the sickest example of irony that I have ever experienced in my lifetime. As demented and horrible that I have become over the past eight and a half months, I assure you that even I could never make up that crap.

I wish I would have said "Goodbye" before Drew left for work on the morning of the accident. The last dialogue that Drew and I exchanged occurred sometime around 6AM that morning. We were in bed, talking about how the new kitten was surprisingly well-behaved during the night. Then, I drifted back to sleep. And that was it. Just thinking about it makes me want to throw up. Now, all I can do is tell Drew how much I love him, so much as words will describe, and hope that he comprehends at least half of it.

I must say, I think it would be freaking awesome if I really did have access to a magical AOL account that I could use to communicate with Drew. The little AOL man saying "You've Got Mail!" would be the happiest sound I would ever hear.

Please--No More Moons & Stars

2009-05-18T18:42:00.003-04:00

I am writing this from Drew's room at USH. I was just talking to Drew's father, telling him that it is about time I post another cheerful update. So, why not now?

Drew has been quite alert today. He has been taking three minute naps, then waking for ten minutes. This has been going on for most of the day. He seems to be on his way back from the Mercy hospital setback. I am so glad. I am sure you can all tell that I am miserable when Drew is having a setback.

Drew has also been moving his right arm a lot today. It has been tight for the past few weeks, but it seems to be getting better now. He is able to move it around more fluidly to reach for things. He has also been waving "Hi" and "Bye" again. It was especially cute when he waved goodbye to my mom today. He also groaned a bit at her as she was getting ready to leave. I think he really enjoys her visits.

Right now, he is messing with his hospital gown. He has lifted it up past his stomach as though he wants to try to take it off. It is obvious that he hates the gowns that they have here. They ALL have moons and stars on them. Knowing Drew, he probably thinks they are too girly. We usually dress him in t'shirts (he seems to like his The Office shirt the best), but sometimes we have to put the gowns on him because he sweats a lot.

There really is not much else to report. Drew is making slow progress, but I am happy with it. I know he is working hard. Sometimes, he really does appear to be working too hard. Again, knowing Drew, this is not all that surprising.

While I will admit that Drew's physical endurance is not exactly up to the level of an Olympic Athlete (sorry, honey, I speak the truth!), Drew's mental endurance is AMAZING. Drew is all about problem solving. Whenever he faces a puzzle that he cannot figure out, he barely rests until he can come up with a solution. And, of course, he always *always* comes up with a more than adequate solution. So, I imagine that Drew is diligently working to solve all the puzzles that diffuse axonal injury has left in his brain.

I Am Just a Yucky Girl

2009-05-13T23:37:00.004-04:00

Recently, I have received a few phone calls and messages from people who are worried about me. Even when I cannot quite make out what you are saying because you speak too quickly (I am looking in your direction, LJ), I appreciate your love and support.

With that said, Drew and I are doing better. First, Drew has been approved for another two weeks of rehab. This takes some pressure off of the family for the moment. I actually got a phone message from Drew's neurologist a few days ago. She said she was excited because she observed a few reactions from Drew that she had not seen before. So, good. Let's keep this going.

Drew has been a bit more alert for the past few days. His level of consciousness is not quite up to pre-Mercy hospital status; however, I found out this evening that there is a reasonable explanation for that. Drew's neurologist has been experimenting with Drew's medication. She took him off of quite a few different medications because she thought they could have been causing his neurostorms. Of course, these same medications that may cause neurostorms are also critical to Drew's recovery because they stimulate his brain to make him more alert and give him greater control over his body. Drew's neurologist recognizes this fact, so she is going to start putting Drew back on the medications within the next few days. Once this happens, we should see more progress.

I am perturbed about one thing. Drew would not let me kiss him tonight! He took my hand when I asked him to; however, I tried to kiss him on the lips twice and each time he turned his head away and made a funny face. Maybe he has temporarily forgotten that I am his wife. Or maybe he has temporarily forgotten that he is a grown man and that girls are not yucky.

Tonight, I was actually reminded of the period when Drew and I were just friends. During this time, I would develop and attempt to carry out a number of silly schemes that would lead to Drew's lips touching mine. Like, we would be lying on the couch watching television and my face would "accidentally" fall onto his. Hah. Each time I tried this, he would turn away. I thought he was disgusted by me. Years later, I found out he was just shy.

Hopefully, years from now, Drew and I will be able to look back on this situation and share some laughs. I still have hope that Drew will fully emerge from his coma and recover to the point where he will be able to communicate with me. I can handle any challenges that we need to face; I just really, really need for him to be able to communicate with me. As I have done a lot of research on people with Drew's type of brain injury, I know that this is a goal that Drew will very possibly meet someday. Let's keep hoping!

I Give Up.

2009-05-11T23:43:00.003-04:00

In case you were wondering, there were no miraculous breakthroughs this evening. For the first hour and a half that I was with Drew, I could not even wake him up! And seriously, I tried everything!

I tried rubbing his chest. I tried shouting "Wake Up!" repeatedly. I tried chucking a childish fit at him. I tried range of motion. My final attempt to arouse Drew involved using a magical nose hair clipper that always seems to perk him up; alas, the only response this elicited was a frown and a tear.

Yeah, I kind of know how he feels.

As we get closer and closer to the critical one year mark, Drew seems to be regressing rather than progressing. I am honestly wondering whether or not it is time to start preparing myself for a life of misery.

I can say for sure that the past eight months have been ABSOLUTE misery for me. While I have never suffered a TBI, I am quite certain that they have been absolute misery for my husband as well. I cannot even begin to imagine what the future holds for us. To be honest, it is very scary. It makes me want to give up on life completely.

Imagine a life of watching your best friend suffer. Every day. Day in. Day out.

Imagine waking up every day knowing that everything you ever worked for has completely disappeared due to the carelessness of one F'ing animal whose tribe never taught it to behave.

Imagine living each moment in agony, knowing that above mentioned F'ing animal is out partying, doing drugs, and paying lawyers to keep its ass out of jail when it should be paying YOU.

Imagine having nothing to look forward to except death.

Sigh.

2009-05-11T14:59:00.002-04:00

I don't like writing blog entries anymore!

I have nothing profound to say. Every day I am angry. Writing about it just adds fuel to my fire.

I am going to attempt to write something non-angry today.

The truth is, Drew has not made any progress since the week before the whole Mercy Hospital incident. I am inclined to indulge in my human nature and blame USH for this; however, realistically I must say that they are only partly to blame.

I believe that Drew's neurostorms have caused most of this setback. Watching Drew have a neurostorm is a horrible experience; I can only imagine how it must feel to him. His temperature quickly rises, his heart rate soars, he sweats profusely, his muscles become tight, and he moans unhappily. The worst part is that there is absolutely nothing anybody can do to stop them! I actually resorted to prayer the other night because I was so desperate to help Drew get some relief. That worked as well as an amputee's prayer for limb restoration.

The good news is that the storming episodes are starting to taper off. They now happen less frequently and are less serious. This is usually what happens--they do not usually just stop "cold turkey." I hope that when they stop completely, we will see Drew make more progress. This is likely.

I am going to see Drew this afternoon after work. Maybe, just maybe, I will have something positive to report!

I Will Conquer the World, One Shower at a Time

2009-05-06T15:18:00.003-04:00

Wow. I am feeling nasty today. I have not washed my hair since Sunday. I recently read an article in People magazine where many popular actresses stated that they enjoy having dirty hair because dirty hair is easier to style. *People*, it simply is not true!

Now that I have gotten that off my chest, allow me to state that I have been meaning to wash my hair for days now. Unfortunately, depression never fails to get in the way. We have reached a critical crossroad in the course of Drew's recovery. Decisions that I make within the next few weeks could have a huge impact on his final outcome. I cannot stand the pressure!

Now, if you were to ask Drew's neurologist, Drew's fate is already sealed due to poor decisions that the family made when Drew was first released from Shock Trauma. She told us that if we would have put Drew under her care immediately, the situation would have turned out differently. I am ready to stand up and call a big huge bullshit on that call. I do not believe in her anymore than I believe in God at this point--and she is far from a god.

So, the rehabilitation facility is pressuring us to put Drew in a nursing home. I would consider doing this...over my dead, decapitated body. Patients like my husband very rarely do well in nursing homes. Most of the time, they do not even maintain the progress that they fought hard to gain during their short time in rehab. I have devoted countless hours to researching cases of severe brain damage and extended coma. I would know.

I know that I really need to go out on a limb and take some sort of action. I am not sure what my next move is. Right now? I could try washing my hair.

Reflex. My. Ass.

2009-04-30T11:50:00.005-04:00

This is a very difficult update to make. Lately, all of my updates have been difficult. I fear that the bad news will never subside.

I am currently sitting at my desk at work. I do not know how I got here. I do not know how I am going to make it through the day. My sole motivation for showing up this morning is that I had to conduct a training session. I suppose it would have looked bad if I had not showed up. Plus, I really do need to train people right now -- as I honestly cannot foresee that I will be able to maintain my job much longer.

What happened yesterday that was so awful? I'm not even sure. In my non-humble but extremely un-doctorish opinion, Drew had a good day yesterday. He is responsive again and appears to be recovering from the set back that was caused by *USH* sending him to Mercy hospital.

However, the coma emergence team thinks differently. The family meeting was a disaster.

Drew is only being given two more weeks in the program. We were kindly asked to begin thinking about Plan B. The de-euthamized version of this request would sound something like this: "Find a nursing home or take Drew home."

Before I get carried away, they are willing to keep Drew if he makes progress in the next two weeks. However, he will not make progress in the way that they define it.

How do they define progress? I am not exactly sure. According to Drew's occupational therapist, he has not made any progress. What? Really? Going to the gym and using the machines does not constitute progress? Learning to do at least one new activity each week does not constitute progress? Increasing number of reps does not constitute progress? Um, ACTUALLY BEING ABLE TO MOVE THE ARM ON COMMAND is not progress?

Bull. F-ing. Shit.

According to the OT, when Drew does so many reps of one exercise, he begins to think that it is not purposeful movement but rather automatic movement that is just happening due to a pattern in his brain. In addition, the OT thinks that Drew's responses are random when it takes him more than 15 seconds to respond. Really? So pulling a peg out of a hole and putting it back in is random? No, no, no, *no*, NO, **NO**.

The OT of course proceeded to explain to us how sometimes when Drew squeezes hard onto something it is due to reflex. Duh. BUT PUTTING PEGS INTO A HOLE AND GRABBING RINGS ON AN EXERCISE MACHINE ARE NOT REFLEXES. WTF. SERIOUSLY.

I was ready to maul him. I assured him that my husband is not in a vegetative state and that the vast majority of his responses are meaningful and not reflexive. So, he explained that he knows that Drew is not in a vegetative state and that he knows that not everything is a reflex. But really, this man's first language is not English. So I have no idea what the F he meant.

As for Drew's neurologist, she very authoritatively stated that "Drew will never walk." I insisted to her that she cannot say that. I understand that it will be extremely difficult for Drew to walk. However, I am not afraid to be challenged to refute her statement. I can reference several sources that show people who recovered at the same rate or slower than Drew who now walk. Granted, they are not completely wheelchair-independent. But they walk. And I bet I know why. They walk because their families were determined to help them. They walk because they were determined to do it. They walk because their therapists were not assholes.

So, what's next? Drew's speech therapist is willing to work with him some more to try to get him to make progress with eating and communicating. He will make some progress with this. The question is whether or not it will be enough to sustain him in the program.

As for the OT, I do not even want him working with Drew. The family does a better job with Drew, and we have a better attitude. So, sayanara, or however the hell you say it.

What is our Plan B? I decline to discuss that right now. What I will say is that I refuse to put Drew in a nursing home.

There's a lot more I can say, but I am completely angry and depressed. I honestly do not know what to do with myself.

Just Say No to Neurostorms

2009-04-28T22:42:00.005-04:00

Drew was almost sent back to Shock Trauma today! Thank goodness that Drew's mom was around to stop that mess.

Basically, Drew just had another neurostorm. By the time I arrived at USH, he was fine. He is now lying on a cooling mattress to help keep his temperature down. That is pretty much all we can do for him when his fevers are due to neurostorms.

Again, Drew was resting tonight. However, I could easily wake him up by rubbing his chest and talking to him softly. He made a few attempts to hug me tonight and at times seemed to be genuinely interested in what I was saying to him.

Some good news is that Drew still did well on the Coma Recovery test yesterday. I never bothered to ask how he did, because I figured it would be another record low. He was, after all, doped up on pain medication yesterday. And no, he is still not back on any neurostimulants.

Anyway, his father informed me today that Drew got a 14 on the test. This isn't as good as his record high of 19; however, this is wonderful considering all that he has had going against him for the past week and a half. The best thing about this is that Drew actually got a point for something that he has never gotten a point for before: Vocalizing on Command! After being stuck at "Oral Reflexive" in the oromotor category for 8 months, this is a great sign of progress.

I hate to get ahead of myself, but vocalizing on command is the first step towards something that I have been dreaming of for so long now. You guys *must* know what that is, so I will not say it and jinx myself! All I will say is that Drew must be taking my threats seriously. I keep telling him that with each month that passes without him saying a recognizable word, I will adopt a new cat. Hah.

I am a bit worried because we have a family meeting at USH tomorrow. Drew's neurologist and therapist told us that they are not planning on kicking us out yet. I have been freaking out about that! However, we were advised to be ready with a list of responses that we have seen from Drew. I developed a long list while sitting in traffic tonight; I am good to go.

I am beginning to fear that Drew is a bit of an enigma to the coma emergence team. From what I have heard, most patients either emerge quickly or fail to ever show any complex responses. Drew is coming back to us, but we are moving at a turtle's pace! And he is *extremely* inconsistent. It is so hard to be patient.

I Hate Rollercoasters. I Don't Even Think I am Tall Enough to Ride this One.

2009-04-27T23:18:00.006-04:00

After an awful week, I am finally ready to report that Drew is stable and seems to be back on the road to recovery.

So, what happened last week? Well, you all know that Drew spent three useless days at Mercy hospital. After Mercy could find nothing wrong with him, he was transferred to Shock Trauma to spend a few more days as a human pin cushion. Shock Trauma found nothing wrong with Drew, so they released him back to University Specialty on Thursday night. I felt relieved, but this did not last.

University Specialty called at 4:30 AM Friday morning. Drew's heart rate was 160, and his temperature was 103. They wanted to send him back to Shock Trauma. I am glad that the doctor at USH at least had the decency to contact the family before sending him out this time; however, I was obviously very stressed out after receiving the phone call.

Drew's parents and I immediately went to Shock Trauma to be with Drew. When we got there, his temperature had already gone down. It turns out that he was dehydrated because someone at USH forgot to give him fluids when he arrived the night before. His heart rate, on the other hand, would not slow down much.

We still do not know exactly what was wrong with Drew. By 2PM Friday, both his heart rate and temperature had stabilized. The Shock Trauma doctors ran a few more tests just to make sure that they had exhausted all possibilities. Everything came back negative.

The final diagnosis? Neuro-Storms. This basically means that Drew's brain stem injury occasionally causes his autonomic brain functions, such as heart rate and temperature control, to become unstable. I spoke to one of Drew's nurses and he agreed that this may be happening as a result of Drew fighting to emerge fully from his coma. As Drew tries harder and harder to respond to us, his brain may be forgetting to do some essential activities. This is something that is common with severe brain injury, especially as patients are emerging from comas.

Drew has been back at USH since Saturday evening. So far, he appears to be doing well. He has not been super-responsive, but he is tracking and following commands. Also, he actually moved his legs on command for a therapist today! That is a first. This is all good news, considering that he has been off neurostimulants for two weeks and is currently receiving a steady supply of narcotic pain killers. I have *huge* beef over the pain killers, but I will complain more about this later.

The important thing is that Drew is getting back on track. We are still on a rollercoaster, but I suppose this one is more like the Scooby Doo coaster. I can totally handle this.

Expect some more amazing progress soon!

Update From Dad - 04/23/2009

2009-04-23T15:17:00.001-04:00

Hey everyone - after my last update - I felt compelled to just bring you all up to date . Drew has been moved to University Maryland Shock Trauma ( Tuesday) and is in room 406 - 4th floor - he is actually in one of the rooms he was previously in … they are running a ton of tests and not finding anything - they have done full sets of blood work ups , urine, stool , chest and abdominal X-rays , shunt fluids , and still probing ………….. The good news is that his temperature and heart rate have went down to a more acceptable level - but the doctors are all scratching their heads ??? Both at Mercy and Shock Trauma ! We don't know what is going on - but each day - they rule out more things - they are addressing his teeth and plan to look at his arm for maybe a blood clot or something ……. Emily brought up a good point - that after all this is done - they may find that it is just a Brain injury thing where the brain just losses control for a little time while it fixes other items within itself ?? so who knows - Drew is not communicating in any way and his body is tightened up , we keep trying to get Drew to relax his arm and hand & I was fortunate to have a little alone time last night with Drew from about 8:30 to after 10:00pm and he did allow me to hold his hand and lean his head towards me as if to hug me and he moans a lot - but he did seem to be resting then - we all are working to relax him and he is getting great care there - so we wait !

Update From Dad - 04/20/2009

2009-04-23T15:16:00.001-04:00

Hello again - I hope everyone is doing fine! This weeks update on Drew is a tough one - he had a good week last week and increased in his abilities overall - he was very responsive to questions and interactions , and not only increased his repetitions in his work out routine - but added some new functions as well --- but then came Saturday morning - Drew has had continual ,but occasional muscle spasms and he had one of those attacks early Saturday morning along with a slight fever that has persisted for the last 3-4-5 days - the on call Doctor - misinterpreted it as a seizure and had him rushed to a hospital - Shock Trauma is who has handled Drew's case since day one was on a Code Red and not accepting any new patients - thus he was routed to Mercy Medical center - a good hospital - but they have no previous records of Drew and now he has been there since Saturday morning and going through a complete set of testing and labs trying to discover what caused those " seizures" and the fevers ……… so far they have only managed to come back to us with issues which we already know and are part of Drew's overall status - there are some things that while they appear to be an issue - aren't - what would be an issue is a change in those things - which by the way - none of those things have increased or changed in any way - all a good thing - but now because of this detour - Drew has missed what may have been an important appointment this morning with the folks that know him best - all because we have to now train a whole new hospital staff of Drew's stuff! Yesterday we tried to get Drew moved back to University Specialties or forwarded on to Shock Trauma , but Mercy Medical is unwilling to release him until they have had ample time to fully evaluate him ….. Funny thing is they kept telling us that couldn't do anything for Drew or figure anything out - until we wanted to move him elsewhere ??? But - whatever - now they claim that his an intestinal / urinary track infection that they will treat with general antibiotics in hopes of curing what caused the fevers …. On top of all of this - Drew has what we believe to be a cavity in his mouth - he tells us his mouth is hurting and we can see puffy gums and a black spot on his tooth . We wipe Oragel on his gums and he gets some relief .. University Specialty claims that only Kerman Hospital has a facility to handle dental work on a person that is unconscious - we don't understand that - because Shock Trauma is a training ground for dental surgery - but to refer him for any dental work - we are told that it must be a medical emergency , and that extraction is the only option. We think it can be drilled and filled - why lose a tooth and risk another spot for infection? But you know these medical doctors are close to being GOD'S and we shouldn't question their abilities - yeah right ? Mercy Medicals answer to the pain of his teeth - is Morphine - now - we come up to today ! Drew is at Mercy Medical and being monitored - he has missed his CT scan at Shock Trauma and we have no idea when he will go back to University Specialty or Shock Trauma…. Or when or what Mercy will be able to do with him or for him. We have no ideal about getting his dental work attended to or what is causing his fever / temperature ( it runs from 99 - 102 mostly and 103 once - 104 is a cause for real alarms in adults) we , the family keep asking if the dental problem could cause the fever - the doctors answer is " well maybe - but we have to exhaust all the other avenues" , mean while - my son is living 24/7 with a tooth ache - anyone who has ever had one of those know how frustrating that can be ! Plus Mercy can't detect if there is an infection in the shunt and he will have to go to Shock Trauma for a CT Scan - which if you remember - he would have this morning if this whole thing wasn't so SCREWED UP - keep in mind it all started with the doctor's misinterpretation ….. And if you can't read between the lines - I am pissed off beyond my abilities to contain myself - I will first get Drew the care he needs and then look out - I'm tired and grumpy and want someone's head on a platter . Also Drew is now NON- RESPONSIVE IN ANY WAY - what if this whole thing throws him back to the beginning - a relapse ????? You guys don't know what we go through to get him to the point he is and we don't need some stupid ass doctor "F"ing that up……oh - by the way there is a lot more that I decided not to even mention. If I have offended one - I 'm sorry - but this is from my heart and know I should have not said most of what I have said - but I never claimed to be an angel - my daughter-in-law says I'm a mix of Essex red-neck and some else that she can't quite put her finger on …. So now that I have said enough - I really should shut up and get some other stuff done !

Thanks for listening to me !

Andy

Hey, What's Going On?

2009-04-23T14:57:00.004-04:00

I apologize for the lack of updates recently. I have been dreading this one.

Basically, things have been going down hill big time since Saturday morning. I fear that I could not adequately explain the events of the past few hellish days even if I had days of free time to write this.

Suffice it to say that one doctor's stupid mistake has caused Drew to experience immense unnecessary suffering. As we have helplessly watched Drew deteriorate neurologically, my family and I have been spiraling down a tunnel of confusion, anger, and sadness.

Meanwhile, we are trying to stay just strong enough to fight with countless doctors and nurses to get things straightened out and get everyone's favorite blue-eyed engineer (I mean Drew...BTW...not me!) back on track. A few days ago, my mother overheard one Shock Trauma nurse say to another, "I remember this family. This is the family that doesn't take any shit." Indeed, this is true, and I am proud of it. However, I must admit that when the day is over I just want to take off my scary face and crawl into bed with the one-eyed cat and a gallon of ice cream.

I am going to post some updates that my father-in-law wrote. I think he did a pretty good job of explaining the situation on behalf of the entire family.

Happy Arbor Day! Or Something.

2009-04-13T00:30:00.006-04:00

Since the accident, I no longer celebrate holidays. In fact, I make a conscious effort to avoid them.

As a result, I completely forgot about Easter this year. For the past few days, I felt puzzled whenever I heard someone say, "Have a nice holiday!" On Friday, I found myself perusing a mental checklist of holidays. It was only after I convinced myself that St. Patrick's day had already passed and that no normal person would ever wish someone a happy Earth Day that I realized the upcoming holiday was Easter.

Naturally, I was depressed Sunday morning when I realized that Drew and I would have to spend yet another holiday away from home. In an effort to make myself feel better, I began to reflect on the progress that Drew has made since the last big holiday, Christmas.

Here is a list of some awesome things that Drew could not do back then but can do now. In reality, I could come up with a long list of very specific things. I decided to make a shorter list of more general things. I also included some realistic goals that I would love for Drew to meet by the next big holiday.

Breathe Completely Unaided: Drew got his trach out in January. He was taken off oxygen in February. He has been doing great with this. Goal for Christmas 2009: *Begin* to eat without the feeding tube.

Make Sounds: Ok. Drew made a few random sounds prior to Christmas. However, he is much more vocal now. He seems to make sounds with the purpose of communicating with us. Goal for Christmas 2009: Get control over the mouth. Turn sounds into words.

Show Emotion: We see frustration. We see sadness. More recently he has expressed love to us, as he is starting to reach for various family members and hug them without being asked. Goal for Christmas 2009: Show more happiness. Smile and laugh.

Lift Arm on Command: Drew goes to the gym and participates in occupational therapy! As of Christmas, Drew could only do finger movements on command. Goal for Christmas 2009: Increase arm control. Start to perform self-care activities.

Move Feet & Legs on Command: Drew can now easily wiggle his feet on command and is just starting to make leg movements on command. Goal for Christmas 2009: Become consistent with the legs. Start working out at the gym with the PT.

Identify & Use Objects: Drew can use a tissue to wipe his face. He knows to put a marker to paper to try to write. He knows where the Start button and the Jump button are on the Nintendo controller. He plays ball with us. Goal for Christmas 2009: Write actual words. Improve ability to manipulate Nintendo controller. Learn to throw the ball (right now, he hands it to us or pushes it to us).

Stay Awake Longer than Ten Minutes at a Time: Drew still sleeps a lot. This is inevitable with a brain stem injury. However, I would estimate that the amount of time he is awake has tripled--maybe even quadrupled--since Christmas. Goal for Christmas 2009: Stay awake for hours at a time.

Relax Mouth: Drew is now able to relax his mouth, whereas his jaws used to be tightly clenched together. Goal for Christmas 2009: Learn to open mouth on command. Stick out tongue. TALK.

Answer Yes/No Questions: Drew is still inconsistent with this, but he can communicate by pointing to yes/no or using hand gestures. When he is in the mood to express his wishes, this works quite well. Goal for Christmas 2009: Satisfy criteria for functional communication. This requires Drew to be able to answer 6/6 yes/no questions correctly during evaluation. His highest score is 4/6, I believe.

Drink Soda: I saved this one for last because this is the big news of the day. We gave Drew a cup of soda yesterday. He immediately put it to his mouth, but he seemed to have a hard time tilting the cup to actually make the soda come out. We got him a straw, as this is usually easier for him, but he refused to use it. We decided to just let him hold the cup and concentrate on the task for a bit. After a few minutes, he actually got the motion right! He swallowed the soda with no problem. It was only a tiny bit, but this is a huge step for someone who has been tube fed with seven months. Goal for Christmas 2009: Again, start to eat by mouth.

Writing this has been therapeutic for me. It has forced me to recognize that Drew has made significant progress within the past few months. It has also allowed me to look ahead and realize that Drew is not that far off from reaching many more exciting milestones.

Overall, I am fairly certain that the day will come when Drew will return home. We have a lifetime of holidays at home to look forward to.

More Guilt Trips...And Scary Nights at Rehab

2009-04-13T00:05:00.005-04:00

Friday and Saturday were both solid days for Drew. He seems to be emerging a bit more each week, as he slowly gains the capacity to sustain awareness for longer periods of time.

I find that he is expressing emotion more often as time passes. The guilt trip behavior I wrote about a few weeks ago is becoming a bi-nightly occurrence. Saturday night, Drew seemed to be so sad as we were leaving. I think he knew what was happening. He even hugged his father three times without being told to do so.

About five seconds after Drew's parents and my father left, Drew squeezed his eyes shut very tightly and appeared noticeably unhappy. After a few minutes, he opened his eyes and moaned at me for some time. I tried to calm him down before I left, but he continued moaning and moving his arms.

I also tried to get him to tell me what was wrong. He concentrated on his communication card for a few minutes, but I suppose none of the options corresponded with what he wanted to say. I gave him some paper and a marker, hoping he would finally write an intelligible message to me, but as usual he just scribbled a bit. I imagine that he may want to write something but cannot quite figure out how to do it.

Finally, I told him I was going to leave. As I stepped away from the bed, he reached for me. He waved to me several times--serious waves rather than timid waves--as I moved closer to the door. I watched him for a little while from outside the room, hoping he would go to sleep after he realized I was gone. He didn't. He proceeded to move his hand around and look at his body with a confused expression on his face.

I worried about him a lot last night. I am filled with horror when I think about him waking up in a strange place, not being able to move 70% of his body, and having no idea where he is or how he ended up in this predicament. I am so afraid for him. Why does this have to be so difficult!

Geez, Woman. Haven't You Ever Seen a Guy Put a Q-tip in His Mouth?

2009-04-10T10:43:00.004-04:00

I am at work right now. I was 36 minutes late today. I *so* should not be blogging. However, I wanted to take this opportunity to post something cheery while I am in a good mood.

Drew had an awesome night last night. Due to baseball traffic and happy pedestrians getting in my way, I did not get to the rehab center until almost 7PM, but I was able to stay until 10PM. When I first arrived, Drew began moaning at me immediately. This is good; it means he acknowledged my presence.

For the first half hour that I was with Drew, he seemed to be trying hard to communicate something to me and his parents. He was pointing all around the room. He was even pointing to the side of the room as opposed to directly in front of him as he normally does. We began bringing him various items to see if he would grab them. We were never able to figure out what he wanted.

Later in the evening, Drew did something that absolutely amazed me. To fully appreciate this anecdote, you would have to understand the utter horror that Drew has been through with his mouth. Until a few months ago, his jaws were tightly clenched. More recently, his jaw is relaxed, but he clearly has a difficult time controlling his mouth movement.

Anyway, here is the story. Drew reached for his communication card and pointed to "I am in pain." We turned the card over and showed him the picture of the body and asked him to tell us where it hurt. He pointed to the mouth. We decided to put some Orajel on a cavity that has been causing him some issues.

Drew's dad put some Orajel on a Q-tip and tried to force Drew's mouth open. It would not budge, and Drew's hand was moving around wildly. Drew reached for the Q-tip, so we gave it to him. He proceeded to take it to his mouth, but the Q-tip landed above his lip. "No, Drew, it goes in your mouth," I told him.

Drew's dad then asked Drew if he and Drew could do it together. Drew did a quick thumbs up. So, Drew's dad helped Drew aim the Q-tip, and Drew opened his mouth and put the Q-tip inside with no problem! My jaw dropped. I stared at Drew in disbelief. After a few seconds, he looked over at me as if to say, "Geez, woman. What are you staring at?" Hah. This was priceless.

Afterwards, Drew's dad told Drew that next time he would give Drew a mirror to he could more easily aim the Q-tip to his mouth. Then, he said, "Let's shake on it," and Drew immediately gave his hand to his dad. It was so neat to see.

Of course, Drew seemed as though he did not want me to leave him last night. He was resting as I was preparing to leave. When I went over to him and said, "Drew, I have to get going now," he opened his eyes and responded with a slight grunt. He then began moaning loudly and pointing "No." After a few minutes of saying goodnight to him, he waved to me.

It is apparent that we are entering a new phase in Drew's recovery process. Within the past week, he has been making more and more attempts to communicate with us. This can quickly become frustrating for everyone involved, as Drew is clearly struggling to emerge from such a long period of silence. Nevertheless, I would consider this a blessing. As I look back to the previous stages of 1) Non-Responsive and 2) Responsive Only Upon Request, I realize how lucky I am to be able to see Drew going through this stage.

Nicole Richie

2009-04-07T11:13:00.004-04:00

I am so depressed today. There is nothing in my life worth smiling about. Life is so painful.

I am just sitting here at work, trying to be a good, productive girl. But no, that is impossible, given the fact that every other second I am bombarded with reminders of how much my life sucks.

Even Yahoo! has to piss me off. Oh, Yahoo!, all I want to do is check my e-mail. I do not want you to keep telling me about how Nicole Richie and her boyfriend from that shitty band are having another child. I hate Nicole Richie. She is famous for being an 82-pound drug addict. Why does she get to be happy?

Actually, forget Nicole Richie. I just received an e-mail from a co-worker with happy news about her newborn. Isn't it ironic? I cannot even bring myself to read the e-mail, much less look at the pictures. Why does *everybody* get to be happy except me and Drew?

I have mulled this over many times. When Drew's accident first happened, a Christian friend of mine instructed me to purge my life of sin so that God would heal Drew. Now, I hate to behave in a "holier than thou" fashion, but I was no Nicole Richie. I actively worked on having a good relationship with God. I went to Bible study weekly and took it very seriously. I tried to bring friends and even co-workers to Christ. I tried to be as much like Jesus as my mortal self would allow.

I guess that was not enough for Sky Fairy.

At first, I took my friend's advice to heart. I sought to reverse every facet of my sinful nature. I told God that He would have complete control of my life from that point on. I threw myself into a life of prayer. I apologized time and time again to both Drew and God for being the kind of wife that any Biblical figure would have been ashamed of. I was always devoted, supportive, and loyal, but I insisted upon being my husband's equal, and I spent more time focusing on career and education than cooking and cleaning. Worst of all, I was deathly afraid of being a mother. I used to think it was the worst thing that could ever happen to me. Wow. I guess the joke is on me.

I swore to God that if he allowed Drew to pull through, I would be a regular Suzy Homemaker and begin popping out babies immediately. I meant it. Seriously, I would do anything for Drew.

That still was not enough for Sky Fairy.

I am finished with praying and bargaining with God. I am finished with beating myself down and trying to adhere to unrealistic expectations for my behavior. During my more rational moments, I realize that my so-called sin never caused this accident. Even if it did, what kind of god would punish Drew for my wrongdoing? Certainly not any god whose ass I'd ever want to kiss.

Still, I am tired of languishing in constant sorrow as the rest of the world gets married, has babies, goes on vacation, and gets to live without a five thousand pound weight threatening to bring it to its knees. My beautiful life is gone. It has been replaced by this bullshit.

Drew's the Boss, Now

2009-04-06T12:07:00.005-04:00

Another week has passed, and I am ashamed of myself. Drew has been doing well again since Thursday, and I have failed to update all of you on his wonderful and quick comeback.

Tuesday of last week was very bad. Drew continued to be unresponsive. His coma recovery score hit an all time low. I thought it would take Drew weeks to get back on track. Instead, it only took one day and some medication changes.

Now, I am elated to say that Drew has absolutely amazed me within the past few days. He has been consistently aware. He has been making more attempts to interact with the family and communicate his needs to us. It fills me with intense joy to watch him respond in new ways each day.

The past four days have been full of activity and progress for Drew. I would say that these have been his best days of recovery yet. I want to summarize some of the events that I found to be particularly awesome:

Thursday
Drew was so affectionate on Thursday night! I had been lying in bed with him for some time when I decided to sit up. When I sat up, he picked his arm up and put it around me! He then proceeded to rub my shoulder. It made me so happy. He knows who I am. He loves me. That is the greatest feeling!

Friday
Drew's boss visited Friday. He watched her intently as she spoke to him. After some time, he decided to hand her his tissue, which he had been using to wipe sweat off of his face. I suppose he wanted her to throw it away for him. Hence, the title of this post. : )

Saturday
I got to watch Drew during his OT session in the rehab gym. He continues to do well with the arm curl machine and is now working on getting increased control of his right arm and hand. It is so neat to watch him actually participate in his therapy. The Shock Trauma doctors told us that Drew would never do this. Honestly, a large part of me believed them. Sometimes, I still cannot believe my eyes when the therapist tells Drew to do something and I actually see Drew try to do it. And, let me tell you, he tries so hard.

He is now able to do an activity that involves moving rings from one side of an arch to another side. I did not see this, but apparently after moving a few rings, Drew realized that all he had to do was take the rings to the top of the arch and then let them go so that they would fall to the other side. The therapist said that Drew had this look on his face, as though he was studying the contraption and figuring out the best way to accomplish the task. It is obvious that the engineer in Drew is coming out to kick some TBI ass.

Sunday
I took a small beach ball to the rehab center on Sunday. Drew really liked it and kept raising his hand for me to throw it to him. Each time I would throw it, he would do his best to catch it and then push it back to me. Sometimes, the ball would land in an awkward position on his lap. Drew would then study the situation and figure out the best way to get the ball back to me.

Drew was alert for almost the entire day on Sunday. This is a contrast to his normal behavior that suggests that he drifts in and out of consciousness. As Drew progresses, I am sure we will have more and more days like this until we find that his consciousness is 100% intact. I am not sure when it will happen, but it should be relatively soon. In the past few months, he has gone from having his consciousness be about 25% intact to having his consciousness be about 70% intact. So, I try to remain positive.

Overall, I am just so VERY proud of Drew!

Update From Dad - 04/06/2009

2009-04-06T11:23:00.000-04:00

In the words of Andy Hagan:

Hello everyone - I know it's been a little while since my last update - I have a bunch of excuses for that - but they are non-important . The biggest reason was that Drew wasn't doing well - he sort of relapsed a little . There was a lot going on with him , his medications and what is thought to be reactions to the then current medications ….Now - between the Hospital and the family we think we have Drew stabilized & back on track . The last few days Drew has started to return to his normal self ( if that is the proper way to put it?). He is returning to the gym and those activities , plus showed the physical therapist his ability with hand to eye coordination , he did an activity that takes these rings from one side of a hoop to the other side . I know to the average person this sounds trivial - but to a TBI patient - it's a BIG accomplishment. Drew continues to increase in his interactions to family , friends, staff, and various stimulus ….. Heck Yesterday Emily brought a beach ball that looked like a Basketball and Drew not only was catching it - but he was working on trying to throw it with all of his abilities. You guys should see the determination and drive he shows on his face. I / we know he is fighting this with all he has . As a parent I am both happy to see him put up such a fight and sad that he has to …… but we all push on. There are so many details that I want to share - but this e-mail would go on for pages and as slow as I type - it would take me too long - so let me leave you all will this simple thought - Drew is doing better each and every day and we can't just look at a moment in time and think that this is it - for we do not know the final outcome - no one but God does - and we have seen so many people like Drew heal , bounce back , however is the proper way to say that - that we know there isn't a defined process or known progress . We continue to love & support Drew in his recovery and will do anything necessary to achieve whatever is to be !

I hope you all know that as I read back over this thing - I realize there is a lot of much important stuff not said and I wish I had the time to finish this properly! But - that will have to be another day and another time !

Sincerely

Andy

We've Got the "I Just Came out of a Coma and I Can't Move" Blues

2009-03-30T21:39:00.005-04:00

I am in a bad mood. Drew is in a bad mood.

For the past few days, Drew has not been responding well to anybody. He has not been answering any of our questions. He will not follow commands. He has been sleeping more often than usual.

His CT scan came back normal, so nothing is wrong there. Instead, I strongly suspect that Drew is depressed. Last week, his doctor discontinued his anti-depressant because it was interfering with his digestive system. I have been unable to get a clear answer regarding whether or not Drew was placed on a different anti-depressant, but I have decided that he absolutely must be on something.

Most likely, this is just a temporary setback. Drew's speech therapist told us that she knows that Drew is aware. Drew just needs to get the motivation to keep responding to us and keep working towards a recovery.

I hope he gets over the bluesy period soon. As soon as he gets over it, I'll be happy again.

Update From Dad - 3/23/2009

2009-03-26T13:17:00.003-04:00

I almost forgot to post this. Here is the latest update from Pops:

Hi everyone - it's been a while since I put out an update - sorry about that - but Drew is doing very well and each day seems to bring new accomplishments . Drew continues to work out at the gym, but hasn't increased his activity there . He continues to try and speak and move his arms and legs more and communicate with pointing , etc. - but this is a slow process - and while he is increasing this - it still seems so slow . We take him outside as often as possible and expose him to as much stimulation as possible, both physical & mental , but we stay very aware of his resting requirements …… just a few of his new accomplishments are lifting his leg from the side of the bed and back up onto the bed, reaching / touching his head and helping to put on his clothes , catching the ball faster , kicking his leg up while in bed on command , waving good bye when asked to , and turning the wave around to say " come here" , he is working to open his mouth and stick out his tongue - but this continues to be a tough one for him. All of these are positive steps towards recovery and we continue to support Drew anyway we can.

Thanks' to all for your prayers , your visits , and your support in every way !

Sincerely

Andy Hagan

P.S. if I have forgotten anyone - I'm sorry - please forward a copy to anyone you all feel would want to know - thanks again !

Come on Drew, Chuck Norris Never Gets a Crappy Coma Recovery Score

2009-03-26T11:19:00.006-04:00

I apologize once again for the lack of updates. Every day brings something new that I can write about, but I have been so tired.

A meeting with the accident lawyer left me severely emotionally distraught on Monday. I spent Tuesday and Wednesday trying to catch up on work. This means that I have spent my nights programming, testing, and deploying code instead of simply blogging, shopping on eBay, and eating Klondike bars.

As for Drew, he is still progressing nicely from what I have seen. He has been moving his legs on command more often and in a less subtle manner. My family and I figured out that if we place pillows under Drew's knees, he can lift the lower part of his leg on his own quite easily. It seems that Drew's physical therapist is looking for some full-on Walker Texas Ranger leg kicking action. I, however, have decided to be realistic and allow Drew to gradually build his leg strength.

Drew has to go to Shock Trauma for a CT scan today. He only scored 12 on the coma recovery scale yesterday after scoring 17, 19, and 17 in previous weeks, so his doctor is concerned. I am not worried for several reasons.

First, patients who are slowly emerging from comas are bound to be inconsistent. Drew could have been depressed. He could have been in a state of confusion, which is quite common for someone at his current level of cognitive functioning.

Second, Drew's doctor conducted yesterday's test because Drew's speech therapist, who normally conducts the test, was not available. Drew's doctor is a wonderfully intelligent and competent woman. I have the utmost respect for her, and I must say that I do not think Drew would be progressing as well without her guidance over his treatment program. However, Drew only sees her once a week for approximately ten minutes. I rarely see Drew respond well to people he is not familiar with. Plus, Drew's doctor is always in a hurry. I myself am intimidated by her, and I do not have a brain injury.

Overall, I have seen Drew make progress. However, he still has his moments when he insists on sleeping or ignoring people. Chances are, Drew's doctor caught him at a bad moment. I think she realizes this, but I have always known her to be cautious. I appreciate that she is so proactive.

Ok. I don't have an intelligent way to end this entry. I just really, really need to do some actual work now.

My Hubby's First Guilt Trip

2009-03-20T23:02:00.009-04:00

After nearly three days of having absolutely no interest in life, I experienced an inexplicable surge of happiness today. I have no idea why this happened. I did not even recognize the feeling at first. I just felt happy and comfortable for no reason. I was able to get up and spend all day at work without wanting to go cry in the stairwell, break pens, or go into the bathroom and kick the sanitary pad disposal boxes off the wall. I was even able to go to a work luncheon and actually socialize, which is something that I do not do well with even under normal circumstances. Let's hope that the serotonin keeps on flowing.

As for Drew, he could really use some more serotonin. He was miserable today, and he is starting to let us know how miserable he is. Drew was moaning quite a bit today. At one point, I said to him, "You are coming out of your coma! Be happy!" He responded with a finger point, which is how we've been teaching him to say "no" for the past few months. I thought this was a coincidence, so I asked him, "What? You're not happy?" At that instant, he responded with another enthusiastic finger point.

He also had me in tears as I was leaving him tonight. Before I left, I told him to wave goodnight to me. He began to wave as I walked towards the doorway. When I turned around to say my final goodnight, he began pointing his finger again on and off, as if to say "no, no, no." I told him several times that I was sorry and that I did not want to leave. He started moaning. The whole time he was staring at me with a disturbed look on his face.

This is the first time that Drew has tried to stop me from leaving him. This is a common sign of progress as a patient is recovering from a severe TBI. Nevertheless, it breaks my heart. Supposedly, it will only get worse before it gets better.

After six months in La La Land, Drew is slowly becoming aware of his surroundings. Most likely, he knows that something is very wrong but has no idea what has happened to him. All we can do is talk to him, reassure him, and tell him what happened in a calm and simple manner.

As Drew progresses, he will begin to understand what has happened. In addition, he will be able to communicate more easily, which will alleviate a lot of frustration. For now, Drew and I will press on--we have our own little ways of keeping each other in the race.

Piss Ants & The Sky Fairy

2009-03-18T13:38:00.008-04:00

I normally think that the idea of reincarnation is downright silly. Nevertheless, the idea that I was Adolph Hitler in a past life popped into my head as I was driving to work today. I am at least 50% German. Maybe this is karma's sick way of saying, "Hey, Hitler, you piss ant. You have blonde hair and blue eyes now, and the world really hates you, Bitch." If the whole reincarnation thing has any validity to it, I was certainly a scumbag in my previous life.

I swear. I have been so miserable for the past few days. Drew is not doing well. He was pretty unresponsive yesterday and has been having intense muscle spasms. Sometimes, when he looks at me, I have no idea whether or not he knows I am his wife. It kills me to look into his eyes and realize that he is probably a million miles away. There are times when I am certain that he is right there with me; there are other times when it seems as though he has been replaced with some strange robotic version of himself.

I had a dream about Drew this morning. In the dream, his spirit came to me. We shared some real quality time together. I find it strange that even though he is not dead I have dreams of his ghost visiting me. When I woke up, I was excruciatingly depressed. I almost called out of work--Why can't I ever get my act together and start acting like a normal person?

Right now I find myself at work, trying desperately to engage myself in my peon work. I cannot ever get into it. One year ago I was learning to be a project manager and going on business trips. Now, I might as well be serving coffee to all of the fortunate ones.

Let me make it clear that I do not blame my company nor my managers. They have been endlessly patient, flexible, and compassionate with me during this awful time. They have gone above and beyond what most companies would do. If I could get myself together and step up to the plate, I'm sure things would change. But, I don't think I will ever be what I once was.

Realistically, my IQ probably has not dropped, but being a computer programmer requires you to really wrap your head around your work and become immersed in it. Apparently, I would rather research TBI recovery and write blog entries. It is not about laziness, I swear. I am just always thinking about Drew.

I also live with the harsh reality that if I decide to allow my career to take off again I will be leaving Drew in the dust. I am not ready for that. Sometimes, I think I won't ever be ready. I really feel like Sky Fairy is punishing me. I remember being so angry with Drew because his entry level starting salary was significantly higher than mine for essentially the same job description. I guess I was never angry with Drew. I was just angry with the system. Our salaries eventually evened out and I became content with that area of my life. Two months later, Drew's accident happened.

Seriously. Doesn't it make sense that Sky Fairy is sitting on his throne shaking his finger at me in an "I told you so" fashion? For two years, I was worried about the idea of my husband making more money than I made. Now, I will almost certainly be the bread winner for the rest of our lives. This is what the phrase "Be careful what you wish for" is all about.

Thank You, Sky Fairy! Yeah.

Retrospective Part One: Shock Trauma is the Eleventh Circle of Hell - And its Inhabitants Like to Document Everything

2009-03-17T00:40:00.000-04:00

Now that Drew is doing so well, I regret not starting this blog earlier. To be honest, I was hesitant to start the blog for so long because I did not want to broadcast Drew's story to the world if it was not going to have a positive outcome.

I have read quite a few blogs about people with severe brain injuries who remain in a vegetative state. My heart truly goes out to the devoted loved ones who maintain these blogs. I am amazed at how they display a positive outlook to the world in the face of devastating circumstances. I wish I had the same capacity for hope as they do. These people are optimists. I, however, only have about two optimistic bones in my body.

I wish I would have started this blog from the beginning. To truly appreciate Drew's progress, it is important to know the whole story. I myself am most amazed by Drew when I sit back and remind myself of everything he has been through and how far he has come. I regret the fact that I was so pessimistic in the beginning. I failed to have faith in Drew. I failed to listen to the inner voice that has been whispering to me for the past six months and telling me that Drew is going to be fine.

In a pathetic attempt to remedy this, I have decided to start writing entries about Drew's progress up until this point. It is important that you all know Drew's story from the beginning.

August 29th 2008: Drew was hit head-on and most likely lost consciousness immediately. The paramedics arrive approximately three minutes later. Drew was still breathing but only had a Glasgow Coma Score of 4. The lowest possible score is 3. He got the extra point because he was extending his arm in response to pain.

Drew was taken to University of Maryland Shock Trauma Center where he immediately had surgery to repair a depressed skull fracture. His EEG showed brain activity and his CT scans appeared relatively normal. He also had surgery to repair severe arm and leg fractures.He was placed on a ventilator.

August 30th - September 5th: Drew was in critical but stable condition in a medically-induced coma. His intracranial pressure remained stable. He was breathing over the ventilator. The doctors were "cautiously optimistic" and decided to begin to remove his sedation.

September 6th - September 7th: Drew was not responsive after the doctors took him out of the medically-induced coma. His limbs remained at his sides and his hands were tightly clenched in fists. His arms sometimes moved randomly in response to pain. His legs twitched at times. He also had a lot of hiccups. The STC staff so kindly took every possible opportunity to remind us that all these responses were reflexes. The doctors were worried, so they decided to order an MRI.

September 8th: The head neurosurgeon sent one of his peons to deliver the bad news. The speech went something like this, "The MRI shows brain stem damage and damage to the corpus callosum. We really do not know how much damage there is, but Drew will most likely remain exactly as you see him now. Even if he does come out of the coma, he won't be...Of course, we really will not know for a year..." What the hell?

September 9th: This was our two year wedding anniversary. How joyful is that? On this day, the neurology team conducted a family meeting in which they tried to pretend that they knew what the hell they were talking about and beat it into us that there was absolutely no hope.

Honestly, at the time I did not realize how much bull shit they were feeding us. Why do they feel as though they are doing grieving families a favor by being so unnecessarily negative? Did they think we would fork over Drew's organs? We tried to ask them if they had ever seen someone with Drew's type of injury go on to make a decent recovery. They did not say "yes." On the other hand, they never said "no" either.

The term "diffuse axonal injury" came up. I had already had a nagging suspicion that Drew had DAI after I had read about it days before. I was too overcome by grief to take in much of the other details of what they were saying to me that day. I recall that they were quite cryptic. They did not answer any of our questions directly. At the same time, they were hesitant to mutter these simple words of truth: "We just don't know."

As I mentioned in an earlier post, I did, in fact, have a serious mental breakdown which caused me to run out of the meeting room and down the hall screaming. It will not do me any good to be coy about the situation--The neurology team took the liberty of documenting all of this so that I will be able to remember this shining moment for years to come! When they chased me down, I started yelling, "I want to die. I have no reason to live." I hyperventilated. They forced me to drink some apple juice and took me down to the psych ward for an evaluation. I spoke to two doctors who asked me questions to try to determine whether I was bi-polar or whether I was just a woman who was freaking out at the idea of her husband being in a permanent vegetative state. It turns out that I am not and never have been bi-polar. Yeah, there is only one option left.

I was discharged from the psych ward and went back upstairs to see Drew. I crawled into bed with him and cried. I know that I did this because the neurology team documented it as well. At this point, I had no hope. I almost gave up on Drew.

The next day, I could not get myself out of bed. All I could do was pray. I got an answer. The little voice that I mentioned earlier in this post made its debut. I will not say right now exactly what this voice told me, but suffice it to say that after hearing it I knew I needed to press on. So, I got out of bed and went to see Drew.

And the battle began...

If Drew Does Not Talk Soon, I am Going to be an Old Cat Lady

2009-03-16T22:19:00.010-04:00

Apparently, it has been almost a week since my last post.

There have been no major changes in Drew's condition, but Drew continues to be alert. He appears to be working very hard to re-learn all of the skills that the drugged-up giant turd took away from him. Now that my family and I are sure that Drew understands everything we are saying, we bombard him with commands. If he cannot do what we ask of him, he usually responds with a look of deep concentration and a groan. If we work on it long enough, sweat starts to run down his forehead or he starts to tremble. It really does hurt my heart to see him having to fight so hard, but I do see a hint of the light at the end of this tunnel.

What I want more than anything right now is for Drew to open his mouth and talk to me! I realize that it will be a long time before Drew will be speaking in complete sentences; however, I assure him each and every day that it is time for him to just let out a "yes," a "no," or a "hi." A couple of days ago, I decided to try the "Emily Hagan Pain in the Ass Method" of speech therapy. The theory behind this high-tech treatment is that Drew will eventually respond with a "no" if I repeatedly ask him questions like "May I pop your pimples?" or "Would you allow me to go to the animal shelter and adopt seven cats after I leave here?" Unfortunately, all he did was groan at me. Some lucky kitties will be getting a new home if Drew does not give me a definite answer within the next couple of months! All kidding aside, I asked him at two different times how many cats he would allow me to have and he held up two fingers both times. Does this mean that Ellie the one-eyed cat can have a buddy?

Even though Drew does not talk, he is starting to communicate more using hand gestures. He uses a thumbs up for "yes" and a finger point for "no." He has a hard time just pointing his finger, so sometimes his "no" looks like he is pointing a gun at you, with his finger pointed and his thumb up at the same time. If he ever does this to you, try not to tease him about it too much. I don't want him to get discouraged to the point where he stops trying to answer our questions.

Drew did engage me in a nice little "conversation" yesterday. He started to look agitated, so I explained to him what happened. This is how our chat went:

Me: Drew, you were in a car accident six months ago. It was not your fault. Do you understand?
Drew: Finger Point.
Me: Do you know that you have been in a coma for six months?
Drew: Finger Point.
Me: I know that it is so hard to believe. Don't worry, though. You are going to be OK. Do you trust me?
Drew: Thumbs Up.

Wow. I love him so much. Even after all of my jacked-up attempts at speech therapy, he still believes in me. Maybe if I am nice to him for awhile, he will cave in and let me have three cats.

Another Super Tuesday

2009-03-10T23:29:00.003-04:00

I am exhausted, so I will not write much tonight. I just could not wait to post this!

Drew scored 19/23 today on the JFK Coma Recovery Scale. His specific scores were as follows:

Auditory Function - 4/4 - Consistent Movement to Command
Visual Function - 5/5 - Object Recognition
Motor Function - 6/6 - Functional Object Use
Oromotor Function - 1/3 - Reflexive (...still working on this...)
Communication - 1/2 - Non-Functional but Intentional
Arousal - 2/3 - Eye Opening without Stimulation

Ladies and Gentlemen, we are getting very close to a full coma emergence! Keep in mind that coma emergence is only the beginning of a long journey back to independence for severely brain-injured patients. However, the fact that he is emerging many months before the one year milestone bodes well for his recovery. I am very proud of Drew; I cannot wait to see what he does next!

Update From Dad - 3/10/2009

2009-03-10T12:49:00.004-04:00

Here is the weekly update from my father-in-law:

Hello everyone ! I know that for just over 6 months I have been reporting Drew's status - some good and some bad - well this seems to be a turning point in his progress - he has amazed everyone within the last few weeks - and as his Dad - I have been speechless ! I had previously talked about his " ability to comprehend some minimal commands both written and verbally , he has demonstrated his drive to repair himself by grabbing the work out equipment and using it properly , he has increased his ability to throw a ball while focusing on the rim as a target , he increases his grunting sounds , and his visual attentiveness, as well as his hand coordination while playing the Nintendo system ." now , in the last few days he went from 2 repetitions to 10 with 5 lbs resistance on the curl machine , plus added a rowing machine - also 10 reps from 2 , also with 5 lbs resistance weights. Drew has demonstrated hand to eye coordination by stacking cups inside each other and placing items inside of the cups - then pouring from one cup to another a ball . He turns pages of books and signals messages off of a message board we have - we are working on doing all of this on a more consistent level - but the mechanics are there.

Drew still has a million miles to go - but he is definitely on the road to recovery - and where it may stop - no one knows , well - except for God , and with that said - we all are highly encouraged to continue his course of rehabilitation . There are always a ton of things to say , to brag about , and discuss , but I do try and keep these updates short and to the point !

Thanks to all of you- may GOD bless you and keep you all safe from harm …

Andy

It's a Love Story, Baby Just Say Yes

2009-03-09T12:22:00.015-04:00

Taylor Swift deserves to have her pretty little face dunked into a bucket of tuna fish just for writing(?) this song. Simply listening to this song for more than ten seconds gives me an intense desire to vomit.

Now, let's talk about a real life love story.

Drew had another great day yesterday. He did ten reps of two different gym exercises for his occupational therapist. He then spent some time working with a peg board, taking pegs out of holes and putting them back in. It is so neat for me to hear that Drew is actually participating in his therapy sessions rather than just receiving passive range of motion. I started to suspect that Drew was ready for this type of thing about a month ago, but it is quite difficult to get therapists to take notice of patients' abilities. Thanks to Drew's parents for initially sneaking Drew into the gym and then convincing the OT to give Drew a try.

Next, we need to work on getting the physical therapist aka "leg guy" to do more intense therapy with Drew. He told us that he can only do the tilt table and passive range of motion until Drew starts to purposefully move his legs more consistently. I understand the logic, but sometimes you really need to push patients beyond what their abilities appear to be. So far, this approach has worked with Drew. Therefore, I have decided to start drilling Drew to move his legs. I think I can help him, or I think I can help him to help himself.

For the past three months, I have worked Drew's arms out relentlessly; I demanded him to help me and to move his arms himself even when he was not showing any evidence that he was able to. I did mean things. For example, I would stretch his arm up over his head and rest it on my shoulder, forcing him to move it back to a more comfortable position himself. I would position his arm so that it would be hanging off of his chair and would force him to move it back himself. Of course, some of you may be thinking, "Poor Drew. That is horrible." Yes, it is horrible. Believe me when I say that it does not give me any joy to have to treat my husband as though he is a contestant on "The Biggest Loser." However, it has been an amazing experience to see the results of all of my "tough love."

First, Drew started giving me resistance. Next, he started doing one rep of one type of motion. Gradually, he got stronger. Now, he is performing well without my help at the rehab gym. I am confident that my family and I can get his legs working just as well. In the past week, I have witnessed him move his left leg and both feet on command. While the movements are subtle, I am positive that they are purposeful and not reflexive; this is a great start. My honey has his work cut out for him, but I believe that he will start to move his legs more and that he will walk!

Sweet Taylor Swift most likely does not know anything about the kind of love that it takes to get through a situation like this. I am talking about the kind of love it takes to not only play the role of a naive Juliet but also to play an endless variety of not-so-romanticized roles: the determined personal trainer, the crazy little beeotch who will verbally plow over anyone who stands in her way, the devoted wife who refuses to let go, and whatever else it takes just to make it through the day.

Remember: It's Like Training for a Marathon, or Two

2009-03-08T00:19:00.006-05:00

Unfortunately, I do not have any new, exciting news to report about Drew. Wednesday and Thursday were great days for him. Friday was quite bad, and I ended up becoming massively depressed by end of the day.

Drew seemed sleepy on Friday. He would only follow commands at my insistence, he was not making many attempts to communicate with us, and he did not seem to care that I was there with him. However, when I think about this with a level head, I realize that one month ago a day like Friday would have been considered a good day. Two months ago, Friday would have been considered a great day. Three months ago, my family and I would have been jumping for joy to get such a level of responsiveness out of him.

I don't understand why I haven't gotten the hang of this by now! Every time Drew has a bad day, my mood becomes unstable, I become extremely pessimistic, and I drive home like a maniac. Yet, the bad day is simply one bad day. I tell myself all the time that recovering from a traumatic brain injury is like training for a marathon. Back when I had aspirations of running a marathon, I would run seven miles on one day and then only be able to run two miles the next. I imagine what Drew is going through is similar, albeit more physically, mentally, and emotionally demanding. After a couple of good days, there will inevitably be a not-so-good day, which will naturally be followed by more good days. Overall, his progress follows an upward trend. It is just slow! I want it all, right now. I imagine that he does, too.

Anyway, today was a better day. I wouldn't say it was great, but it was good. Drew's occupational therapist took him to the gym for the first time today. He witnessed that Drew did five reps on the arm pulley machine. Drew's parents and I have seen him do this, but I get the impression that his therapist did not quite believe us. Now, he has seen it, and he is impressed. This means that Drew gets to go to the gym more often! In my opinion, more therapy is better at this point. I want Drew to be pushed to his limits.

Drew also seemed as though he was actually happy to see me today. He was back to his usual ways of looking at me when I talk to him and moving his head back and forth to follow me around the room. I got the feeling that he wanted to say something to me tonight. Also, when I asked him to kiss me, he picked his head up and moved his lips towards mine.

I was quite exhausted today, so I used my alone time with him as nap time. It always makes me feel good to curl up with Drew in his bed and just hug him. This makes my soul happy, and it can be very rejuvenating to me when I am not having such a great day. However, I usually end up feeling crappy again when I have to leave him. I would love to have Drew at home with me, even in his current state, but I know that right now he needs the professionals' services at the rehabilitation center.

So, here I am. It is 1AM on a weekend. I am in my parents' house in my childhood bedroom, watching Lifetime with my cat, and blogging, for crap's sake! Oh, and did I mention that I am trying to wait patiently for my husband to get close to that marathon finish line?

Rowing (Gently?) Down the Stream of Consciousness

2009-03-03T23:42:00.002-05:00

I am ecstatic! Drew got his highest score yet on his weekly JFK Coma Recovery Scale test.

Last week, he got 11. His previous high score was 12. Today, he received...Dun Dun Dun...Drumroll...*17*! Over the past week, there has been a noticeable improvement in Drew's level of consciousness. However, I am very pleasantly surprised that this improvement has been reflected in his test score.

His specific responses are as follows:

Auditory Function - 3/4 - Reproducible Movement to Command
Visual Function - 4/5 - Object Localization/Reaching
Motor Function - 6/6 - Functional Object Use (This is one of the requirements for emergence from minimally conscious state into full consciousness!)
Oromotor Function - 1/3 - Reflexive (Drew currently has minimal control over his mouth; We are working on it.)
Communication - 1/2 - Non-Functional but Intentional
Arousal - 2/3 - Eye Opening without Stimulation

Drew is now at the threshold of emergence from the minimally conscious state. If he keeps up with this pure awesomeness, he will be officially fully conscious very soon! The thought of that is very exciting for me.

Wow. I realize that I have failed to use my exclamation points sparingly throughout this post. However, if you were to put yourself in my place, I am sure you would understand. I get to stand along side my best friend and soul mate as he reclaims his life and makes a recovery that I was told would most likely not happen. While we have a long way to go, I know that Drew and I are living a miracle. That feels good.

Six Months of Limbo

2009-03-03T00:04:00.002-05:00

Oh Hell!@@!#$%&!! Yesterday was the six month anniversary of Drew's accident.

It is very disturbing for me to think that six months has passed and my life has been at a stand still. Even worse, my husband has been lying in a bed for six months! In addition, as if this situation isn't already extremely appalling, the ass face who hit Drew has been walking around with his gun and his shitty attitude for six months!@@!##$&%!!

Meh. I try to concentrate on the positive aspects of this situation. I rejoice in the fact that Drew is not in a persistent vegetative state as the doctors predicted. Drew amazes me every day, and I truly believe that he has a shot at one of those "miracle" recoveries that you only read about in magazines.

I know for sure that while our careers and academic goals have been at a stand still for six months, our souls and our love have grown exponentially. There is certainly value in that. I always tell myself that after I get through this, I will be able to get through anything. This is also true for Drew. Getting a Master's degree is absolute *cake* compared to overcoming a traumatic brain injury.

Update From Dad

2009-03-02T23:59:00.005-05:00

This one made me cry. Then again, my emotions have been getting the best of me lately. After all, I had a breakdown at work last week just because one of my co-workers came to the office with her husband and young child. This is actually a very positive update; I'm just silly.

Hello everyone - Yesterday marked 6 months since Drew's accident - and he is starting to improve each day it seems….. Just over 25 years ago I was amazed when I saw this little foot print under the skin of Cheryl's belly and Drew has continued to amaze me through out his 25 years - his recovery is no different . Drew has shown the ability to comprehend some minimal commands both written and verbally , he has demonstrated his drive to repair himself by grabbing the work out equipment and using it properly , he has increased his ability to throw a ball while focusing on the rim as a target , he increases his grunting sounds , and his visual attentiveness, as well as his hand coordination while playing the Nintendo system . Drew still has a million miles to go - but he is definitely on the road to recovery - and where it may stop - no one knows , well except God , and with that said - we all are highly encouraged to continue his course of rehabilitation . There are always a ton of things to say , to brag about , and discuss , but I do try and keep these updates short and to the point !

Thanks to all of the folks that have visited and added to Drew's stimulation , as well as some of the advise and support we have received in other ways - may GOD bless you and keep you safe from harm …

Andy

I'm Back

2009-03-02T23:25:00.004-05:00

Ok. I'm absolutely awful. It has been almost three weeks since my last post! No, I never intended to abandon this blog. However, posting this story and my feelings to the world is as emotionally exhausting as it is therapeutic.

Yesterday, my father told me that he really wants me to continue with this blog because Drew is special and he deserves for the world to know his story. I completely agree with that; so, here I go again.

Drew had a great weekend! Overall, he is responding more consistently, appears to be more alert, and is showing a greater range of motor function. It's very difficult to summarize all the little but amazing things he has been doing to show us that he is with us and just struggling to return to full consciousness.

On Saturday I definitely noticed a change in his demeanor. Saturday was a fun day because my mother and I decided to sneak our cat Ellie into the rehabilitation center for a visit! She was such a good kitty; she sat on Drew's lap the entire time. At first, Drew seemed upset. He would not look at Ellie, and he was trembling. I suspect that he did this because he did not remember Ellie. I know from extensive research that patients with severe brain injury usually lose between one month and two years of their memory from before the injury. We got Ellie only five days before his accident. To make matters worse, our previous cat, Stephanie, died less than one month before the accident.

I took a moment and explained to Drew how Stephanie had gotten sick and passed away and how we decided to adopt Ellie because we wanted another cat. I also showed Drew a picture of me, him, and Ellie. Once he calmed down, I commanded him to "Pet Ellie." He turned towards her and began to stroke her fur with his hand! Honestly, I did not think he would do it. I was amazed. He continued to pet her on and off for the next half hour. I think he enjoyed the visit once I explained the situation to him. I will probably have to explain everything to him when she visits again, but maybe he will surprise me.

Here is a summary of some other things Drew has been doing:

Working Out: He grabs the arm pulleys in the gym and lifts five pounds. When I tell him to release, he does. When I tell him to pull, he does. He does about four reps before he gets bored.
Lifting Entire Arm On Command: He used to only lift his forearm. Now, he can lift the back of his arm one inch off of the bed. This is huge; it means he is getting stronger.
Showing More Consistent Object Use: He put a cup up to his mouth for his therapist two times today!
Playing Ball: It is getting easier for him to throw balls to us when we ask him.
Playing Nintendo: This one is hard for him because he still has *very* limited control over his left arm due to severe fractures. However, he can hit the jump button with his right hand while I work the direction controller on the left. Needless to say, we don't coordinate so well! After about five minutes, he displays frustration then closes his eyes. However, it is obvious that he wants to regain his video game abilities so badly. His eyes get so wide when he is watching Mario.
Waving Goodbye: He often waves goodbye to visitors when they are leaving for the night. Meh. This makes me happy but at the same time melts my heart!

I could go on, but I will save some for later. As you can probably infer from the long list above, Drew is quite conscious and has displayed a high level of cognitive ability. Our objective now is to help Drew respond more consistently, pay attention to tasks for longer periods of time, and communicate with us in a more definite manner.

We'll get there; I guarantee it.

Pimple Popping

2009-02-11T23:35:00.006-05:00

Unfortunately, I was only able to spend an hour and a half with Drew today. When I first arrived and approached his bed, he picked his arm up and extended it towards me. I suppose this means he was happy to see me!

Overall, Drew seemed rather sleepy tonight. He kept his eyes closed for most of the time that I was there. According to his parents, he had an active day in therapy today. He held his head up for 10 to 15 minutes while standing on the tilt table. This is GREAT news, considering that only two months ago he could not even keep his head from slumping to the left side while he was lying in bed. Also, I heard that he picked his entire arm up twice. This is the first time that anyone has seen him do this. Previously, he would only pick up his forearm. Another bit of good news is that the coma emergence team wants to start doing more aggressive therapy on Drew. They would like to start taking him down to the rehabilitation gym next week to try some more advanced methods of physical therapy. I am so thankful that Drew's therapists are willing to devote their time to him and give him the help that he deserves. So far, he has shown that he has great potential to benefit from rehabilitation services. I am hoping that he continues to respond to therapy.

Finally, I want to share this silly anecdote. I mentioned that Drew kept his eyes closed a lot tonight. Sometimes, Drew has his eyes closed because he is actually sleeping. Other times, he has his eyes closed because he wants to avoid human interaction (I completely understand--I do this often.). In order to find out if Drew was paying attention to what was going on around him, I performed the following quick test, which shamelessly exploits Drew's fear of having his pimples popped. He had a pimple under his nose; I really wanted to pop the nasty thing. I decided to be fair. I placed my fingers lightly around the pimple and announced, "Drew, I am going to pop your pimple unless you stop me." He did nothing. "I am going to pop your pimple unless you stop me," I repeated. At that instance, he moved his arm up towards my hand. Though I was disappointed that I would not be able to engage in any pimple-popping fun, I was overjoyed to know that he was listening. I swear, he is in there.

Update From Dad

2009-02-11T14:13:00.005-05:00

Drew had a great weekend and has continued to show improvement in the past couple of days. The following update from Drew's dad summarizes Drew's recent improvements and current status well.

Hello everyone - I wanted to share an update with you all ! Drew still spends a lot of time resting / sleeping - but when he has his aware moments - he amazes us ( the family , the doctors, the nurses , and the support folks at the Hospital and friends ) ………. We had a good week and weekend - Drew went outside a few times and we did all the usual stuff …… but what I wanted to share with you all was yesterday - around noon - I was talking with Drew as I always do , then played on some music ( I had bought a new CD to replace a favorite one of his that was lost in one of our hospital moves) and told him that it is a Sunday so lets goof off a little - I got out a hand held electronic pinball game and we started playing it - all of sudden he pulled it away from my hands - looked at it like he was trying to play it on his own - threw it down and started crying - Man that hurt - but I hugged him and talked about his accomplishment so far and how he is coming around and how he will get better - and he calmed down - later - we went outside for some fresh air and when returning to his room - we detoured into a game room that is on his floor - we had never went in there before ( it is usually full of other patients that are farther along the healing process) - he saw this Basket ball hoop game - eyes wide open - I pushed him up to it and he tried to throw the big orange ball - but it was so big he couldn't - we handed him a tennis ball which he fumbled around with - picked it up and threw it over the lower bar of the game - about 8 inches away - I then tossed it back to him - he picked it up and tossed it to me about 6-7 inches - when I tossed it back to him - he actually caught it and tossed it back to me again - I was playing catch with my son - how GREAT is that ! This may not sound like much to any of you - but it is BIG to me! He shut down not long after that - you see an activity like that takes all the energy he has to accomplish it - he was sweating profusely and breathing hard …… they tell us that just for Drew to lift his arm takes the same energy as one of us running up a few flights of steps. Additionally we worked with Drew using some cue cards and he started to pick them up and stacked them neatly into a pile then held them - I guess he was done with them….. Still, a lot of hand movements from him. The rest of the day Drew was alert for the most part and we are convinced that he is working his butt off to restore himself as much as possible. The crying spell is part of - as he wakes up and realizes his condition - he faces reality - and we have to be there to assist him in overcoming that - like I said this is the part that is both GOOD & BAD !

As Drew's progress continues I will keep you informed - - but we all have jobs and lives and so I won't bore you with the rest of the details - just continue to keep Drew in your thoughts and prayers - please !

Take care of yourselves and may God bless you all !

Andy Hagan

Wow. Am I Really Doing This?

2009-02-06T22:10:00.001-05:00

Today, I, Emily Hagan, am becoming the four hundred and fifteen billionth Joe Shmoe to start a blog. Why am I about to become involved in a hobby that will suck more time out of my week than VH1 Celebreality has? More importantly, why am I choosing to subject *you* to a daily dosage of my musings?

Because I've got an important story to tell, ~~God~~ Sky Fairy Damn It!

As many of you know, my best friend and husband Drew sustained a severe Traumatic Brain Injury (TBI) after being hit head-on by a pathetic humanoid creature in a Dodge Durango on August 29th 2008. Since then, I've been wrestling with the idea of starting a blog. However, I just have not been ready.

I finally created this blog three days ago. A number of factors contributed to my decision. First, I have my own selfish reason--I feel the need to tell the world how I am feeling. I need to be able to vent out all of my confusion and frustration. Moreover, I am an extreme introvert who would rather be able to accomplish all of this without making human contact.

Primarily, I am doing this for Drew. Yes, his injury is very severe. It is true that most people with his type of injury never show any signs of recovery. I still remember the eve of our second wedding anniversary. As I sat in the dreary ICU room staring at my motionless husband, the neurologist told me, "His [brain] is damaged beyond repair. He will most likely remain as you see him now." Needless to say, a large part of me died inside; however, it was not until the next day, when the Shock Trauma neurology team gave my family the formal "no hope" speech, that I decided to run like hell out of the room and scream my head off.

After regaining a certain degree of composure and doing a huge amount of research, my good old stubborn self kicked in. I read stories of patients like Drew who, along with their families, refused to accept a hopeless prognosis and kicked and screamed until they made their way back to life. I learned about the concept of "neuroplasticity," the brain's ability to heal itself after even the most severe brain injury. I reminded myself that Drew is an engineer. He is the smartest person I know. I am an engineer as well, and I am the most determined person that I know. Naturally, if anyone could overcome this, it *would* be Drew! And, if anyone could pull someone out of a deep coma, it would be me!

Drew has a terribly long way to go. He still has not regained full consciousness, and he appears to have trouble controlling his body movements. However, I am proud to say that he has surpassed the doctors' initial prognosis of vegetative state. He is now in a minimally conscious state and appears to be slowly moving towards a full coma emergence.

Drew is working so hard. He deserves to have his story told. I also want him to be able to read this someday and realize how amazing he truly is. As Drew becomes more aware, I have noticed that he seems frustrated and upset--it is only going to get worse for him as he emerges more and realizes what has happened to him. He is going to need to work harder than he has ever worked in order to get his life back. Though I am severely depressed, I am striving to be the kind of wife that Drew deserves. I think part of this involves me chronicling our story until he is ready to add an entry himself.

So, be prepared. Be warned. My close friends and co-workers would confirm that I am often inappropriately candid. I am going to try hard to portray the situation honestly but positively.

In short, life sucks! This situation...blows...chunks. In spite of this, I truly believe that even this can be overcome. I have faith in my husband.

Stay Tuned. I promise, Drew is going to show everybody just what he is made of.