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

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

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.

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 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:  

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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 

Now that you know what Autonomic Dysreflexia is I will continue with the story. I went in to visit Joey and when I arrived he was in a lot of pain and had a fever. He couldn't seem to figure out what the problem was. I lifted the covers and both of his legs were twisted from the knees down to the right. When I say twisted, I don't mean a little bit. I mean totally twisted. I immediately ran out of the room and made a nurse come and look at his legs. I informed them of his condition. It is so amazing how many medical professional don't know what Autonomic Dysreflexia is and don't know how serious this condition is. 

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.

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.