Side Note 1

So, until I am writing about very current times (like daily or weekly) I'm going to insert "Side Note" blogs to tell you things I find important. So things may jump around sometimes.  With that being said.

Today is the 14th anniversary of my loves accident. Most people would look at today as a sad day they would prefer to not remember. Not us! We choose to look at today as a day to celebrate Joey's life. I feel so lucky to have been blessed with Joey and even more lucky that he picked me to spend his life with! Please take some time to appreciate the ones you love and remember why you love them. It's so important.

Round 1

August 2008 Joey was admitted to Thomas Jefferson University Hospital. Joey's father, mother and myself all went with him. What an experience. When we arrived we were placed in a "room". The room consisted of a bed along the wall in the hallway of the hospital with a curtain. The IV pole was a little self sticking plastic hook stuck to the the molding on the wall and it was labeled "IV" in red marker. Once they actually got to Joey they took his vitals and asked a bunch of questions as usual, then they placed 3 bracelets on his arm. The first one was the usual hospital bracelet with his basic info. The next one was a big red bracelet with big black letters that said "ALLERGY". Finally they gave him one that was bright yellow with big black letters that said "FALL RISK". Over load on the bracelets people.

Joey was then taken for some tests while the Nurse Practitioner showed me the way to his room. On the way I asked her if she thought the up coming surgeries would really help him and if he would be able to get back to life. She looked at me with a very sincere soft look and said "yes, I do". That made me feel very safe. Not knowing what you are facing is a very scary thing, so for someone who knows what we are about to go through tell you it's a step in the right direction it makes things a little less scary. We arrived at Joey's room. For such a large hospital with such advanced treatment it's still stuck in the 70's. All of the rooms have a big purple door, his room also had a big yellow bathroom door and a little tiny metal sink. Kind of looks like a prison sink. The curtains are a dirty pink and everything looks very dingy because of how old it is.


Now came the hard part for me. I had to leave Joey there. We had never really spent that much time apart and we still didn't know when the surgeries would begin, or exactly what there plan was. All we knew was we were not going to see each other when we woke up the next morning.

Dr. H

We sat in the exam not knowing what to expect. The nurse came in to get some basic information and Joey's vital signs. She told us the Doctor would be in shortly. Again, alone in the exam room we sat quietly. Both of us nervous and trying to be strong for the other.  As we waited for the Doctor I looked around the small room. There were many diagrams and posters. One of the diagrams caught my attention. It looked very similar to Joey's back. In the lumbar region of Joey's back there was a noticeable inward curve. I pointed it out to Joey and told him that is what his lower back looks like. Then Dr. H walks in and sits down right next to me in the small exam room. He kind of slouches in his seat and introduced himself as he picked at his teeth. If he were not wearing an exam coat we ever would have thought he was a doctor let alone a neurosurgeon. He is a young  man, I would say in his early 40ies. Tall, normal build and wares glasses. He begins to explain that he deals with people in Joey's situation all the time.  I pointed to the diagram that resembles Joey's back and told him that is what it looks like to me. He said "oh, I can tell just by looking at him whats wrong with him. He has what is called a Charcot spine." (A Charcot spine is a late complication of traumatic spinal cord injury that can produce further disability). We asked what needed to be done to fix it and the answer was very intrusive surgery.  Although surgery is never what a person really wants to do, I have to admit it was nice to know that there was something that could be done. Just a few months ago we were left with no hope, now we had some. Dr. H did inform us that sometimes the surgery is not successful. I asked what the time frame would be as far as know if it was successful. He said "Weeks, months, years. Hows that for an answer. This could work or we will become very good friends." Unfortunately, we would become very good friends.

And So The Journey Begins (2008)

Little did we know this would be the beginning of a very long journey. A journey that we are still fighting and working through today.


I went home for a few hours to try and get some sleep, that didn't work. I was tired but worried, we all know those two things don't mix. Joey ended up being in the ICU for about 4 days. Lots of test and lots of questions. About 2 days or so after he was admitted to ICU, a doctor came in with some grim news. Joey had Osteomyelitis (an acute or chronic bone infection) in his spine. The Doctor explained sections of Joey's spine had been destroyed by this infection and sections were missing. The Doctor left us with no hope for a positive outcome. When I asked what we needed to do he didn't have an answer for us. They were still trying to figure it out. Not a very good feeling to have a Doctor basically tell you they don't know if there is an answer to this medical issue.


During the next few days Joey became stable and was moved out of the ICU, onto the "regular" part of the 9th floor at our local hospital. The surgeons and infectious disease Doctors were still trying to put things together and figure out a plan. 

It was now June 3, 2008 and Joey's 31st birthday. Yes my friends, he had to spend his birthday in the hospital. I rushed out of work to go buy him a birthday cake, a card and a few small gifts. When I got everything I was looking for I went out to my car and found that someone had hit my drivers side door and left without leaving any insurance information. How annoying and disrespectful, but there was no time to call the police. I had a sick husband to get to and give him the best hospital birthday anyone could have! When I got to the hospital Joey said he was feeling "full". He has a history of bowel obstructions, so this was not a good sign. Joey's family, a few friends and myself tried to make things as fun as we could but he was just feeling so uncomfortable and wanted to rest. Around 11:00pm Joey called me and asked me to come back to the hospital because he was scared. I rushed right over to be by his side. He had expressed to "his" nurse that he was feeling "full" and very uncomfortable. He also explained his history of bowel obstructions and told her he felt this is where things were headed. She assured us that she was making the appropriate phone calls and doing what she could. 12:00am rolls around and a new nurse is now on duty. We asked the new nurse the status of things and she knew NOTHING about anything! Joey's original nurse left for the night and didn't pass one thing on! You better believe I went right to the nurse manager and made sure that nurse was not going to ever "care" for my husband again! 

Now here is where I need to take a moment and talk about the medical professionals we have run into over the past 2.5 years. Anyone who is currently a medical professional or going to school to become one, please take this to heart. The people who are in your care are important to someone. In most cases, these people are too sick to stand up for themselves. When my husband or anyone I love is in the hospital I am trusting you to take care of them. I expect you to care for my loved one as if  he/she was your loved one. Too often thing are let go because it's not a big deal or important to you. Because you are not laying there in your own body fluid, or because you don't feel the pain, or because it's not your skin that's going to break down doesn't mean YOU should ignore or take your time getting to the patient. I understand it's a job. But you have to remember you are dealing with sick people who depend on you. Now, please let me clarify this is not ALL medical professionals, but it is more then one would think. If you have read this blog from the beginning, you know that Joey lost more of his functioning level because the people who needed to listen didn't.  Really listen and  really look. Make sure you are truly doing your best. If it ever becomes just a job, it's time for you to move on.

Ok, now back to the story. 

So it ended up that Joey did have a bowel obstruction on top of everything else he was dealing with. But this was the least of our worries. I believe it was July 11, 2008 that Joey was released from the hospital here in Bethlehem PA. Still, we had no answer regarding his spine and bone infection. We did however have an appointment at Jefferson University Hospital in Philadelphia to meet with a Neurosurgeon. Until Joey's appointment it was doctors orders that he spend most of the time in bed, so he did. I moved our bed into the living room so he was not always stuck in our bedroom. Finally the day had come. We were on our way to Philly. Joey and I went alone. I was too scared to drive his van in Philly so we took my little car. He was such a trooper. I have a mercury tracer, its small and not easy for Joey to get in and out of. We finally get to Philly and go to the wrong doctors office. So we had to rush about a block over to get there in time. If we were late they could give our appointment away and then we would have to reschedule. 

 

2008

May 29, 2008 started like any other day. Both Joey and I woke up, got ready, said our I love yous and went off to work. He called me in the afternoon to let me know he wasn't feeling well and was going to go home. I didn't think much of it. About 45 minuets later he called again, asking me to come home to get him some water. Strange request. This was obviously a red flag. I rushed home to find him in the bathroom with a 105 fever. I tried to talk him into going to the hospital, but he said it was so high because he had been dunking his head in hot water and had the hair dryer on him (Joey is unable to regulate his temperature, and often has to raise his temp in order to lower it.). He said he was fine so I went back to work to finish my day. When I returned home, his temperature had lowered to 100. For the next several hours his temperature fluctuated between 99 and 100. It was not an odd thing for Joey to have a fever. About once a month, sometimes more often Joey would get "the shakes" and a low fever. So we didn't really think too much of it. We went to bed early that night. Around 1 or 1:30am on May 30, 2008 Joey woke me up and asked that I take him to the hospital. We got to the hospital around 2am and they took us not long after we were there. When they got us in a room and stated to take his vitals his heart rate was very high. They did a few blood tests and about 7 hours later they found him a room in the ICU. At this point no one had even told us what was wrong, even after I asked what felt like a million times. No one told us. On our way up to his room wile waiting for the elevator we found out he had sepsis. Not only did we find out he had sepsis, we also found out that if we would have waited until the morning to go to the hospital he wouldn't have made it through the night. I would have lost Joey. What a frightening thought. The love of my life....gone.

Together

On November 1, 2003 we moved into our home. We were so very excited to finally have a place to call our own!

Joey was working at an insurance company and I was working as a teachers aid at a school for children with mental health issues. We really didn't get to see each other very often because I had daytime hours and Joey worked until 11 at night. But we enjoyed our weekends together.

The first year of our marriage was definitely not easy. Neither of us had ever owned a home before, so we didn't know what we were doing and Joey had always lived with his family so he was trying to get used to the idea of not being around them all the time.

Over the next few years Joey had bouts of sickness that had him in and out of the hospital but we always made it through. Unfortunately he was unable to stay employed at the insurance agency. They were not very understanding about his disability and it was a very uncomfortable work environment.

Joey would eventually get involved with a wheelchair basketball team and he loved it! Before his accident basketball was his thing. He became the vice president of the team and did what ever he could to help support the cause and spread the word.

In September of 2007 Joey got an amazing job as an advocate for people with disabilities. He truly loved this job and was great at it! We were finally on our way to really living life! We were both bringing home a pay check and even got back to school. We were really feeling good about life.