Thursday, April 19, 2012

A Year in the Life

This is not something you ever want to see on a brain scan.

A year ago, we were on the verge of splitting up.  Tommy had requested a job transfer back to Florida, his motorcycle had already been shipped in anticipation of the move, and I was planning on staying in New York without him, relishing the idea of being on my own again.

Then one night, I awoke to find Tommy violently sick, spraying vomit all over the bedroom.  I sat in bed blinking at the clock, trying to figure out what the hell was going on, miserable to have been woken after just a couple hours of sleep, angry at Tommy for making such an ungodly mess, wondering what to do about it all.  Then I got up to check on him.

When Tommy staggered out of the bathroom, he apologized and then fell into a chair.  He said "Something's not right".  I asked if he needed to go to the hospital and he said yes.

My heart started racing.  I went into the bedroom and got some clothes, brought them to Tommy in the dining room and told him to get dressed.  I went to get dressed myself, grabbed a towel and started wiping up the vomit which was sprayed on the walls, the dresser, the bed, the floor...everywhere.

When I went back out to the dining room, Tommy had one sock on.  I asked him why he wasn't dressed and he said he couldn't do it.  I saw that he wasn't moving his left side normally.  My heart stopped.  I dressed him and helped him to the car.  He was listing to one side, not thinking clearly...I had no idea what was happening.  I just knew we were both frightened and that I had to get him to the hospital.

I pulled the car up in front of the Emergency Room doors and we walked in.  I started giving the receptionist Tommy's information while he staggered around the room.  I know from talking with the receptionist later that she thought Tom was drunk at first.  As I tried to explain the situation, he vomited in front of the snack machine.

Soon we were taken into a room.  I ran out and moved the car and by the time I got back they had started doing tests.  Doctors and nurses asked their questions...what could I say?  He had a bad headache last night, and now his left side isn't working.  My mind could reach no conclusions about what was happening. 

                                     Believe it or not, this guy was in the room next to Tommy's at the Glens Falls Hospital ER.

As the night turned to morning, I started making calls...I called in sick to work at my new job where I'd been for just a couple months...I called in sick for Tom, not knowing what to say except that we were at the hospital and didn't know what was wrong.  I felt like a liar.  I felt like I was making up some kind of crazy story.  This sort of thing doesn't happen in real life.  This is a House episode.

Then another Doctor came and asked me to explain it all again.  I told him how Tommy had been complaining of a headache for awhile and how it had gotten really bad last night.  How he thought he had pulled something in his neck and had tried putting ice on he woke, the unbelievable projectile vomiting, how he couldn't dress himself and how I realized that his left side wasn't working right.

The doctor told me that made sense.  That they had found something on his CT scan.  There was "something" on his brain and they didn't know what it was, but that it was going to require brain surgery within the next couple of days.

My mind reeled.  I don't know what I had expected to hear.  I guess I thought the doctor would say it was the flu or poisoning...I don't know.  Anything but an unidentified something on his brain.  Anything other than the need to choose whether to stay in Glens Falls or arrange for an ambulance to bring him to Albany for the surgery.

I chose Albany and called his parents.  Imagine doing that.  Calling your in-laws and explaining calmly that their son is being sent by ambulance to Albany Med because he has something on his brain.  No, you don't know what it is, but he is probably going to need brain surgery within the next couple of days.  Try to keep the panic out of your voice while you do it.

Tommy's parents and brother met us at Glens Falls Hospital just as the ambulance arrived to transport him.  His mother rode with him, his father and brother drove down seperately and I stopped home to let the dog out before making the hour long drive by myself in a daze.

We spent a long day in the ER at Albany Med waiting for a room to open up for him.  I tried to keep the panic at bay as the day wore on and Tommy kept getting worse.  At first, I had thought that he was sleeping and out of it because of the medication they had given him but hour after hour went by and he wasn't being given anything else...he was just slipping away, from incoherent to unconscious and back again.

At some point, I convinced Tommy's family to go home and get some rest, which was good because it was six o'clock at night by the time we got into a room.  The nurse tried to get him up to get his weight.  She looked at me and asked, "Does he walk?"  I always think of that moment, because that's when it hit home...he looks like a stroke victim.  "Yesterday he did," I replied, "Just like you and me".  I saw the realization dawn on her, the sympathy in her eyes. She stood Tommy up with the help of an aide.  His left side was completely useless by that point.  He was awake but not aware.  He kept insisting he could do it himself if they would just let go of him.  "You are, you're doing it yourself," the nurse told him as she pushed his left foot forward with her own.

Not twenty-four hours before, we were on the verge of splitting up.  We were fighting because he had a headache and he was yelling at me like it was my fault.  I was yelling at him to shut the fuck up and let me go to sleep.  Not twenty-four hours before, we were just regular people who were not getting along.   Now, everything was different.  Now I was watching as he lay in a hospital bed, mumbling nonsense phrases then shouting them while looking me in the eye, obviously angry that I didn't understand what he wanted.

I made arrangements to have him watched by the staff overnight so I could go home and get some rest.  I was told that they would do more tests the following day to determine exactly what it was and what the best course of action would be.  We never got that far.

The next morning I got up early and went to drop the dog off at my brother-in-law's house.  On my way there, I received a call from the hospital.  The doctor told me that Tommy's condition had deteriorated rapidly overnight.  He asked for my permission to do emergency brain surgery.  He said that they still didn't know what it was but that they needed to get it out.  He told me to consider it a life saving procedure.  I agreed as I shoved the dog into Tommy's brother's arms.  I agreed to transfusions.  I agreed as they explained that they might have to removed a section of Tommy's skull and put it in a skull bank until the swelling went down enough to reattach it.  I agreed to anything and everything...just do what you have to do.  I explained to Tommy's brother what the conversation had been and then got back in my car, fighting with myself to not speed, drive carefully, don't get in an accident, but hurry hurry hurry.

I kept it together until I got to the surgical waiting room, then finally broke down.

Tommy's family came and waited with me.  We paced, answered doctor's questions.  Again, I had the feeling of being trapped in a House episode.  No, we hadn't been out of the country.  No, Tommy doesn't do drugs.  No, he doesn't have any allergies...

Finally, the surgeon came out and told us that Tommy was okay.  It was an abscess, not a tumor or anything else that might have been far worse.  Surgery had gone well.  They didn't have to remove any of his skull.

After what seemed like an incredibly long wait, we could finally see him.  His head was bandaged.  He had blood filled hoses snaking out of the top of his skull.  Other than that, he looked pretty good.  He was awake.  He talked to us.  He was confused about what had happened, but that was to be expected.

We spent just over a week at Albany Med while Tommy healed.  It seems like we were there so much longer.  It was one of the longest, hardest series of days I hope I ever have to go through.  Tommy was on morphine through most of it and doesn't remember a lot of it now.  He was sometimes very bossy and difficult to deal with.  It was sometimes hard for me to look at him without letting him see the fear in my eyes.

And there were days when I was terrified.  The swelling increased after the surgery until he looked like a fighter on the losing end of a few rounds with Rocky Balboa.  He lost use of the left side of his body completely, including his vision.

Finally, Tommy was cleared to go to rehab at Glens Falls Hospital.  As soon as I got him settled in, I went back to work, trying to regain some kind of normalcy in my life while he did physical therapy.  He regained movement on his left side and quickly regained his strength.  The vision took a little longer.

By early May, Tommy was back home.  He still had a PICC line, and I had to give him IV antibiotics twice a day, which was sometimes nerve wracking, but we got through it.  Altogether, he was only out of work for two months.  His recovery was remarkable and seemingly complete.  He was back on track and we were back together.  Everything seemed to be going well.

Then, in September, Tommy had his first seizure.

Since then, it's been a battle to keep our hope up that there will be an end to this.  Everything will seem to be going well, and then Tommy will have another seizure.  With each seizure comes time off from work while the doctors adjust his medications.  With each increase of medication come side effects from an increase in anxiety and a decrease in patience to an inability to think clearly or concentrate.  With the time off comes worry over money and whether or not Tommy will lose his job.

And, the worst part for Tommy, with each seizure the clock is reset and it's six more months until he can drive.  No car.  No motorcycle.  No freedom.

It's no wonder he's frustrated.  I'm frustrated for him.  

 We are both so grateful that he has come through this as well as he has.  We are especially grateful to the many doctors, nurses, aides, and physical therapists who have helped us along the way and who continue to help us try to find a solution.  We are grateful for our friends and family who have been there to support us along the way, including the friends that Tommy made in rehab at Glens Falls Hospital who have had similar struggles of  their own.

It's been a year since I nearly lost my husband.  It's been the most difficult year of both of our lives.  We have had good moments and bad, but we have worked through all of it together and for that I am grateful.