I am so sorry I have been gone for so long! It has been almost a year since I have posted. I will start writing again this week. I have a lot to fill you all in on and I look forward to sharing with all of you!
Brandee
Brandee
Monday, January 23, 2012
Tuesday, March 29, 2011
The day after
The day after Thanksgiving in 2009 Joey came home from the nursing home. He still had to remain flat and in bed, but at least he was home. For the next 3 month or so Joey, myself and our pups would live in our living room. At least I could move around, Joey was stuck in bed! He would spend his days playing video games, watching TV, being seen by visiting nurses and having to depend on others 100%. He couldn't do anything for himself. If he wanted something to drink, he had to ask. If he was hungry, he had to ask. If he had to go to the bathroom, he had to ask. The simple things we all take for granted everyday were no longer simple things for him.
Friday, February 11, 2011
Side Note 3
Ok, so this one is totally about me. Today was a very exciting day for me, I received an acceptance letter from Cedar Crest College and could not be more happy! I just graduated with an AA in Criminal Justice in December and have been wanting so much to go to Cedar Crest College. To day my wish came true! I start classes in the fall!!! WHOOHOO!!!!!!!!!!!!!!!!!!! <3
Wednesday, February 9, 2011
Side Note # 2
Please join our group on Facebook! In the search bar on your facebook page typ in "The Krycia's Extreme Home Makeover Campaign". We would LOVE to have you! Ask to join the group and as soon as Joey or I can get to the computer to add you, you are in! Please keep reading and as always, we truly appreciate your support!
<3 Brandee & Joey
<3 Brandee & Joey
Sunday, February 6, 2011
Round 3
So we once again find our self in the same position we have been in twice over the past year. Through the x-rays we found that Joey had somehow broken the rods placed in his back during the last round of surgeries. In the pics below the broken rods are circled in red.
We have no idea how this could have happened. Joey had not done anything other then basic daily things like getting dressed with my assistance, and getting in and out of bed also with my assistance. So back we go. Jefferson Hospital seemed to be our home away from home. By this time Joey was feeling a bit more comfortable at the hospital. Not happy, but not as bad as the first or even second round. We knew the drill, but this time there would be a bit of a twist. The surgeon took out the broken hardware, cleaned away any infection that was detected and began to rebuild his spine...again. Not only did the surgeon replace the rods that had broken, he also attached additional rods in between the two vertical rods to help with the stability of the entire thing.
Joey was ordered to spent the next 12 weeks laying flat in bed. On October 31, 2009 Joey was moved from Philly and place in a nursing home in Bethlehem Pennsylvania. What an experience that was for all of us. He was placed in a room with an much older man who was shot in the head several years earlier during a home invasion. This man also suffered from dementia. The things he would yell were terrible and funny at the same time. Here are a few examples: "fuck you, fuck you, fuck you" (repeatedly until he would fall asleep); "gimme somthin to eat" (during his meal); He had a plastic pumpkin on top of his TV and would say "What the fuck you smilin at, pumpkin"; and "Dear lord let my beard grow all around to the ground". We gave him a glow in the dark bracelet and would yell " hey look at my bracelet". But every now and then he would look over at Joey and say "hey Joey, hows your back?". He didn't have many visitors and really enjoyed the time we spent with him. We would always be sure to include him in on the conversation. It didn't seem like any of the nurses or aides understood or cared enough about his ability to interact every now and then. We would tell them that he just asked Joey how his back is and they would dismiss it like it wasn't a big deal. I thought it was a huge deal. So this older man helped us realize how lucky we are to have each other and our ability to be present in the moment at all times.
Joey's was in the nursing home for about a month. What a long month. The care was not as good as I feel it should have been. One night I came in to visit and he was not feeling well. As a part of Joey's paralysis he suffers from something called Autonomic Dysreflexia. What is Autonomic Dysreflexia you ask. Well here is an explanation:
AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure.
The most common cause seems to be overfilling of the bladder. This could be due to a blockage in the urinary drainage device, bladder infection (cystitis), inadequate bladder emptying, bladder spasms, or possibly stones in the bladder.
The second most common cause is a bowel that is full of stool or gas. Any stimulus to the rectum, such as digital stimulation, can trigger a reaction, leading to autonomic dysreflexia.
Other causes include skin irritations, wounds, pressure sores, burns, broken bones, pregnancy, ingrown toenails, appendicitis, and other medical complications.
In general, noxious stimuli (irritants, things which would ordinarily cause pain) to areas of body below the level of spinal injury. Things to consider include:
Jo
We have no idea how this could have happened. Joey had not done anything other then basic daily things like getting dressed with my assistance, and getting in and out of bed also with my assistance. So back we go. Jefferson Hospital seemed to be our home away from home. By this time Joey was feeling a bit more comfortable at the hospital. Not happy, but not as bad as the first or even second round. We knew the drill, but this time there would be a bit of a twist. The surgeon took out the broken hardware, cleaned away any infection that was detected and began to rebuild his spine...again. Not only did the surgeon replace the rods that had broken, he also attached additional rods in between the two vertical rods to help with the stability of the entire thing.
Joey's was in the nursing home for about a month. What a long month. The care was not as good as I feel it should have been. One night I came in to visit and he was not feeling well. As a part of Joey's paralysis he suffers from something called Autonomic Dysreflexia. What is Autonomic Dysreflexia you ask. Well here is an explanation:
What is "Autonomic Dysreflexia?"
Autonomic dysreflexia, also known as hyperreflexia, means an over-activity of the Autonomic Nervous System causing an abrupt onset of excessively high blood pressure. Persons at risk for this problem generally have injury levels above T-5. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure.
Signs & Symptoms
- Pounding headache
(caused by the elevation in blood pressure) - Goose Pimples
- Sweating above the level of injury
- Nasal Congestion
- Slow Pulse
- Blotching of the Skin
- Restlessness
- Hypertension (blood pressure greater than 200/100)
- Flushed (reddened) face
- Red blotches on the skin above level of spinal injury
- Sweating above level of spinal injury
- Nausea
- Slow pulse (< 60 beats per minute)
- Cold, clammy skin below level of spinal injury
Causes
There can be many stimuli that cause autonomic dysreflexia. Anything that would have been painful, uncomfortable, or physically irritating before the injury may cause autonomic dysreflexia after the injury.The most common cause seems to be overfilling of the bladder. This could be due to a blockage in the urinary drainage device, bladder infection (cystitis), inadequate bladder emptying, bladder spasms, or possibly stones in the bladder.
The second most common cause is a bowel that is full of stool or gas. Any stimulus to the rectum, such as digital stimulation, can trigger a reaction, leading to autonomic dysreflexia.
Other causes include skin irritations, wounds, pressure sores, burns, broken bones, pregnancy, ingrown toenails, appendicitis, and other medical complications.
In general, noxious stimuli (irritants, things which would ordinarily cause pain) to areas of body below the level of spinal injury. Things to consider include:
- Bladder (most common) - from overstretch or irritation of bladder wall
- Urinary tract infection
- Urinary retention
- Blocked catheter
- Overfilled collection bag
- Non-compliance with intermittent catheterization program
- Bowel - over distention or irritation
- Constipation / impaction
- Distention during bowel program (digital stimulation)
- Hemorrhoids or anal fissures
- Infection or irritation (eg. appendicitis)
- Skin-related Disorders
- Any direct irritant below the level of injury (eg. - prolonged pressure by object in shoe or chair, cut, bruise, abrasion)
- Pressure sores (decubitus ulcer)
- Ingrown toenails
- Burns (eg. - sunburn, burns from using hot water)
- Tight or restrictive clothing or pressure to skin from sitting on wrinkled clothing
- Sexual Activity
- Over stimulation during sexual activity [stimuli to the pelvic region which would ordinarily be painful if sensation were present]
- Menstrual cramps
- Labor and delivery
- Other
- Heterotopic ossification ("Myositis ossificans", "Heterotopic bone")
- Acute abdominal conditions (gastric ulcer, colitis, peritonitis)
- Skeletal fracture
Round 2
Joey arrived at Jefferson University Hospital around 8pm on December 12, 2008. He had to go a by ambulance and I was unable to go with him. I remember it was snowing hard out that night and I was so nervous for him to be going that night. He called me as soon as he got there and said he was fine. He told me was ready to fight this. So, round 2 began. They did one surgery about the week before Christmas and then sent him home for the holidays. I was very grateful to have him home but also know that typically insurance is not ok with just transporting someone so they could be home for the holiday. I talked with the nurse directly who stated she talked with our insurance company and they agreed to send him home and pick him up via ambulance to return him to the hospital in Philly. The reason it was so important is because they took all of the hardware out of Joey's back and he was not able to sit up more then 15 degrees. There would be no way for us to transport him and we do not have the money to pay for an ambulance transport. On January 2, 2009 The ambulance did come to pick him up, however; there was a $1000.00 charge for it. Upon his return to the hospital they complete the rest of the surgeries and sent him back to the same rehab facility in Allentown. The same things were he had to re-learn just months before he was learning again. They only kept him in the rehab facility for about a month this time. Joey came home at the end of February. This time we were more hopeful that he would maintain a stable spine and we could move on with our life. We had nurses coming in a few times a week to keep an eye on his surgical wound. Joey had a small spot at the bottom of his back that just would not close. The surgeons ordered blood work and test. On September 28, 2009, the day after our 6th wedding anniversary we learned Joey would need another round of surgeries.
Saturday, February 5, 2011
Surgeries, Rehabilitation and More Surgeries
Within a weeks time all the testing was complete and it was time for surgery. What a helpless feeling. Knowing this could be great or not so great. Sitting in a waiting room for hours while my love was being put through things I could not imagine. Several hours went by before Dr. H called to tell me everything went well. I went to see him and was again placed in a waiting room. Finally a nurse came out to tell me that it was ok for me to go in and see him. I was really nervous to see him. He was moved to the
Neuro-Intensive Care Unit of the hospital. When I entered the room he was laying in his bed. His face was very swollen and he had marks on his face that kind of looked like he was smacked around. He was still weak and sleepy from the anesthesia and his throat was sore from the tube that was placed there during surgery to help him breath. He was very happy to see me but in a lot of pain. The nurse was nice enough to allow me to stay in the room with him as long as he wanted me there. He slept restlessly most of the night and I sat by his side trying to make him as comfortable as possible, that wasn't an easy job. Nothing seemed to help, again I was helpless. I spent the night and in the morning the doctors did their rounds. They partially removed his wound (incision from surgery) dressing and said it looked good. This would not be his last surgery, in fact it would be the first of approximately 20 surgeries over the next
2 1/2 years.
Over the next week Joey had 2 more surgeries to move his spine back into place and stabilize it with titanium rods. He spent a few weeks at the hospital in Philly and then was sent back to the Allentown area and placed in a local rehab facility to learn how to do basic, daily things we all take for granted such as getting dressed, moving from one seat to another (transferring) and getting out of bed. He was in the rehab facility for about a month and a half. After his surgery Dr. H had a special brace made for him to help assist in the stabilization of his spine. Joey is unable to sit up more then 30 degrees with out it. Learning how to put the brace on Joey and helping him transfer in and out of bed would be the thing I needed to learn during his stay in the rehab facility. The transferring was more of a positional thing, I didn't find that very difficult but I did find it a little scary. He is unable to hold himself up and if I don't have just the right positioning, he could easily fall and there would be no way to get him up with out the assistance of a medic to ensure no damage was done (not much pressure, right ;) ). I did however, find learning how to position the brace to be very difficult. I will never for get that day. We practiced transferring him to a huge elevated blue mat. The physical Therapist showed Joey's father and I how to remove and put on his brace. His father did fine with it, I however, had some trouble. I remember kneeling next to him trying so hard not to hurt him and use all of my strength at the same time to pull the damn brace under him to center it to provide him with the most support possible. I couldn't take it! I couldn't handle that I was having trouble doing something so important to my husbands well being and began to sob in the middle of my training. I was so embarrassed by my outburst and had to walk away. I felt so weak in that moment. It of course became easier as I practiced and now I'm a pro (lucky for Joey).
Joey came home from the rehab hospital in September of 2008 (just in time for our 5th wedding anniversary). When he saw our house for the first time in months he was finally able to feel some type of comfort. I will never forget his face, and the peace that seemed to come over him. He spent about an hours just looking around and touching things he had not seen since May.
My grandmothers health took a turn for the worse over the next few months. Every Saturday I would wake up and the first thing I would do is call my Grandma who lived in Ohio. On Saturday November 15, 2008 my Great Aunt answered the phone and informed me that my Grandmother was taken to the hospital. I called around to find out where she was taken and finally found her. I was unable to talk to her, but knew she was with family. I was scheduled to leave on Friday November 21, 2008 to visit with my family in Ohio to celebrate and early Thanksgiving with them. On Sunday November 16, 2008 I got to talk to my Grandma. She didn't sound well but said she was ok
I headed home on Thanksgiving day and arrived just in time for Thanksgiving with Joey and his family. I noticed right away that Joey didn't look right. He appeared to be more hunched over then he should be. When we got back to our house I noticed the suture wound on his back didn't seem to look much betters. Over the next few weeks The surgeons in Philly requested Joey have some tests done and was admitted to St. Luke's Hospital in Bethlehem in early December 2008, exactly 3 moths to the week of his return home to me. On December 11, 2008 we learned that Joey had somehow broken T4 and would need to be sent back to Jefferson University Hospital in Philly and undergo the same set of surgeries he just had. Joey and I were devastated, but had not other option and had to push through.
Neuro-Intensive Care Unit of the hospital. When I entered the room he was laying in his bed. His face was very swollen and he had marks on his face that kind of looked like he was smacked around. He was still weak and sleepy from the anesthesia and his throat was sore from the tube that was placed there during surgery to help him breath. He was very happy to see me but in a lot of pain. The nurse was nice enough to allow me to stay in the room with him as long as he wanted me there. He slept restlessly most of the night and I sat by his side trying to make him as comfortable as possible, that wasn't an easy job. Nothing seemed to help, again I was helpless. I spent the night and in the morning the doctors did their rounds. They partially removed his wound (incision from surgery) dressing and said it looked good. This would not be his last surgery, in fact it would be the first of approximately 20 surgeries over the next
2 1/2 years.
Over the next week Joey had 2 more surgeries to move his spine back into place and stabilize it with titanium rods. He spent a few weeks at the hospital in Philly and then was sent back to the Allentown area and placed in a local rehab facility to learn how to do basic, daily things we all take for granted such as getting dressed, moving from one seat to another (transferring) and getting out of bed. He was in the rehab facility for about a month and a half. After his surgery Dr. H had a special brace made for him to help assist in the stabilization of his spine. Joey is unable to sit up more then 30 degrees with out it. Learning how to put the brace on Joey and helping him transfer in and out of bed would be the thing I needed to learn during his stay in the rehab facility. The transferring was more of a positional thing, I didn't find that very difficult but I did find it a little scary. He is unable to hold himself up and if I don't have just the right positioning, he could easily fall and there would be no way to get him up with out the assistance of a medic to ensure no damage was done (not much pressure, right ;) ). I did however, find learning how to position the brace to be very difficult. I will never for get that day. We practiced transferring him to a huge elevated blue mat. The physical Therapist showed Joey's father and I how to remove and put on his brace. His father did fine with it, I however, had some trouble. I remember kneeling next to him trying so hard not to hurt him and use all of my strength at the same time to pull the damn brace under him to center it to provide him with the most support possible. I couldn't take it! I couldn't handle that I was having trouble doing something so important to my husbands well being and began to sob in the middle of my training. I was so embarrassed by my outburst and had to walk away. I felt so weak in that moment. It of course became easier as I practiced and now I'm a pro (lucky for Joey).
Joey came home from the rehab hospital in September of 2008 (just in time for our 5th wedding anniversary). When he saw our house for the first time in months he was finally able to feel some type of comfort. I will never forget his face, and the peace that seemed to come over him. He spent about an hours just looking around and touching things he had not seen since May.
My grandmothers health took a turn for the worse over the next few months. Every Saturday I would wake up and the first thing I would do is call my Grandma who lived in Ohio. On Saturday November 15, 2008 my Great Aunt answered the phone and informed me that my Grandmother was taken to the hospital. I called around to find out where she was taken and finally found her. I was unable to talk to her, but knew she was with family. I was scheduled to leave on Friday November 21, 2008 to visit with my family in Ohio to celebrate and early Thanksgiving with them. On Sunday November 16, 2008 I got to talk to my Grandma. She didn't sound well but said she was ok
Tuesday, December 21, 2010
We Are Back!
Ok people, We are back! I'm sorry it has been so long since I have posted anything. I was finishing up school and was unable to really get to our blog. But we are back so please keep checking in!
Thursday, October 7, 2010
Wednesday, September 22, 2010
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.
Monday, September 20, 2010
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.
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.
Saturday, September 18, 2010
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.
Monday, September 13, 2010
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!
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.
Tuesday, September 7, 2010
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.
Monday, September 6, 2010
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.
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.
Monday, August 30, 2010
Fast Forward
I didn't come along until 1998. By then Joey had gone through a lot of rehab. His original functioning level was at T11/12? He spent several months in a local rehab facility. A few weeks into his recovery Joey noticed his hands were always cold and some strange tingling in his fingers. He made sure to tell the Doctors and Nurses, but they sort of dismissed his concern. It turns out he had some type of swelling in his neck that caused him to lose everything from his neck down. He spent the next few months working on getting his arms and hands back. Due to this swelling Joey lost some ability he would have had and now functions at T6. At this level of functioning he can not feel anything or move anything from the middle of his chest down.
We dated for a few months in 1998 but my mother (she's a story in herself) didn't want me to be with Joey because he was in a wheelchair. So she made it really difficult for us to spend any time together. In May of 1998 Joey was diagnosed with an infection in his tailbone and had to have some of it shaved away. The Doctors also recommended a colostomy (an artificial opening from the colon through the abdominal wall to bypass a diseased portion of the lower intestine and permit passage of intestinal contents.) to ensure infection would stay away. During his recovery he became very distant and I became very upset. We didn't do a very good job communicating at that point and our relationship came to and end for a few years. Over the next few years we had minimal contact and dated other people.
In April of 2000 I was living on my own and had just ended a relationship. I got home from work one night and noticed on my caller ID that Joey had called. I immediately called him back just to find out he had also just ended a relationship. I asked him if wanted some company and he said yes. I got to his house and it was as if we had never been apart. We picked up right where we left off. By December of 2000 we were engaged and by February of 2001 I moved in with him and his parents. What an exciting time in our life!!! Over the next few years we spent a lot of time learning and growing as individuals and a couple. There were a few minor medical issues that required a hospital stay here and there but nothing serious.
On September 27, 2003 we were married! Mr. & Mrs. Joseph Krycia, FINALLY!
We dated for a few months in 1998 but my mother (she's a story in herself) didn't want me to be with Joey because he was in a wheelchair. So she made it really difficult for us to spend any time together. In May of 1998 Joey was diagnosed with an infection in his tailbone and had to have some of it shaved away. The Doctors also recommended a colostomy (an artificial opening from the colon through the abdominal wall to bypass a diseased portion of the lower intestine and permit passage of intestinal contents.) to ensure infection would stay away. During his recovery he became very distant and I became very upset. We didn't do a very good job communicating at that point and our relationship came to and end for a few years. Over the next few years we had minimal contact and dated other people.
In April of 2000 I was living on my own and had just ended a relationship. I got home from work one night and noticed on my caller ID that Joey had called. I immediately called him back just to find out he had also just ended a relationship. I asked him if wanted some company and he said yes. I got to his house and it was as if we had never been apart. We picked up right where we left off. By December of 2000 we were engaged and by February of 2001 I moved in with him and his parents. What an exciting time in our life!!! Over the next few years we spent a lot of time learning and growing as individuals and a couple. There were a few minor medical issues that required a hospital stay here and there but nothing serious.
On September 27, 2003 we were married! Mr. & Mrs. Joseph Krycia, FINALLY!
Sunday, August 29, 2010
Becoming
September 22, 1996 Ryan, Joey (My Husband) and Dave were on their way back to Pennsylvania from Ohio. They had a great visit with their friend Jeff who was attending school in Ohio. Dave and Joey fought over the back seat so they could lay down and take a nap on the 8 hour long drive home. Joey won the debate and got cozy in the back seat. About 45 min into the drive Joey hears gravel hitting the bottom of the car. The next thing he knows , he is flying through the air, hears a woman scream and then complete silence. When he lands he can't breath and hears his friends calling for him with panic in their voices, but he is unable to respond. Once he catches his breath he realizes he is unable to move his legs. Joey's friends find him on his back about 20 feet from the white 1990 VW Jetta and rush to his side asking if he is ok. He responds with "yeah, I'm o.k.. Just get help."
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