In the Clear

After being diagnosed with pneumonia a few weeks ago, I'm finally in the clear. There were a few ups and downs where it got better than worse, but luckily they removed the PICC line last week. I'm still on extra antibiotic nebulizers to make sure it stays away. The good news is I'm feeling much better. The IV antibiotic was 3 times a day so I was unable to go many places because of having to give it during the middle of the afternoon.

Due to my lack of updating, I never informed about receiving a new wheelchair back in December 2015. It has the ability to stand, so I won't have to transfer into my Easystand stander. Although because of being sick and hospitalized throughout 2016, I've been unable to utilize it. In between hospitalizations and then again towards the end of last year, I was doing therapy at Gillette using my stander in order to tolerate standing again.

I had to stop for about a month due to this last illness, but will be starting up again this week. I'm determined to start using my new wheelchair as soon as they get it all adjusted. Another thing that's been holding me back from getting out a lot is pain. Some is caused by positioning and other is from the underlying condition of having a spinal cord injury. No amount of medication helps to relieve it either which can be frustrating.

Being paralyzed from the neck down is difficult, especially when it causes me to be uncomfortable in my own body. It's not easy to sit in one position for a lengthily amount of time, so I'm constantly needing range of motion or some sort of movement. That's where the freedom of being able to stand will be nice comes in once I'm able to utilize my new wheelchair.

Despite being sick I was so positive that this year would bring me luck. Too bad respiratory infections tend to get the better of me. I'm hoping to steer clear for now and be able to enjoy these days without sickness. The one benefit is that the weather here in Minnesota has been extremely nice and I have been able to get outside to take Brody for a walk/roll. We both enjoy a little bit of sunshine!
 

This picture was from November 2016. The trees are bare now and there is a little bit of snow on the ground. I still have to bundle up by wearing warmer clothes, hat, scarf and a blanket!

Jenni

Sick with Hope

I thought that after everything I went through last year I'd be in the clear as far as sickness goes this year. Well, I was wrong. Unfortunately I found out last week that I have pneumonia again. I started suctioning up green and red secretions, similar to early December when I was hospitalized along with the other times last year in which I was sick. Luckily I caught it early enough that I didn't land in the hospital.

The bad part is that it's resistant to many of the medications and nebulizers that I usually take to get rid of it. Monday I had to have a PICC line put in place to administer medications at home. I had to have this done last summer as well so at least I’m familiar with it. I feel like I’m just starting the whole process over again.

Even though I’m just updating everyone, it feels like most of my posts have something to do with an illness. Due to the fact that it's winter, I’ve been having infections and it’s harder for me to get outside, I try to think of the best possible ways to keep busy aside from just watching TV. One thing that I really enjoy doing is playing games. I like all types including card, board and strategy games.

Now hopefully things start clearing up and I stay in the uphill as far as infections go. My goal is to continue to remain positive and allow myself to recover throughout these times of struggle. Please keep me in your thoughts as I continue my journey. Thank you for your support.

Jenni

Remaining Positive

After writing my last blog post and sharing it with others, I wasn’t thinking about how many people didn’t realize how tough I had it last year. My main goal was to share my status along with how I was feeling throughout the times I struggled. Even though my body was tackling and sometimes my mind too, I tried to remain positive. If I didn't I don't think I would've been able to make it through.

Something that I've always tried to encourage others including myself is to focus on the things that have brought us down most and use them as a reminder that there are better situations beyond what we may or have experienced. Throughout my existence I've experienced pain, tragedy, grief, loss of independence etc. but in other ways have gained a bright outlook on life along with a belief system that change can occur.

In my own struggle, my life changed in an instant that has forever impacted my future. I’m constantly reminded of the understanding why I chose to live instead of going down a darker road. Despite what I’ve been through and what took place, I’m still remaining hopeful because that’s what got me through. When I was in the hospital I would try to think of ways in which I could turn my situation into something less negative to get me through.

I realize that many people see my position as challenging or hard and some even feel sorry for me. However, I’m grateful where I’m at knowing very well that my situation could be worse. By working through the challenges and overcoming each obstacle that comes my way is another victory towards a better quality of life.  If I can keep that momentum going and those thoughts in my mind, I know for fact I can accomplish anything. I’m living every day like it’s my last and cherishing what I have.

There are many people in worse off situations than mine struggling with their lives. I accept happiness because I want my being to be worth something; I want meaning and purpose in my life. I need to be able to exist with what happened to me and not die with regret, unforgiving, frustration, bitterness, or anger.

A lot of people ask me "how do you do it?" or "how do you stay so positive after what happened?" The truth of the matter is that sometimes I don't know how I'm doing it or how I am so positive most of the time. One of the ways that keeps me going is being able to help other people along the way. Some have told me that I’m an inspiration to them. All I have to say is that I’m human, stuff happens and I’m just trying to live the best that I know how.

 

I encourage those of you reading this to take a step back and acknowledge the challenges, tough times, obstacles, or other occurrences in your life that you have or are facing. Think about the ways you dealt or coped to get through. If you are experiencing a situation now in which you are searching for ways to overcome think hopefulness, knowing that there are others out there for support and help.

 
Jenni

This Year

Dealing with infections, being sick, pain etc. in my situation is very frustrating and difficult. It brings a lot of stress along with taking up a lot of my time. Not to mention my body doesn’t handle it very well. I get a lot of spasms and my muscles get tight making it hard to do range of motion and causes pain. It seems that one thing affects another and another and so on.

This year has taken a toll on my body physically and emotionally. On January 17, I was hospitalized for pneumonia and discharged 3 months later on March 2. They realized I had an infection in my vertebrate that turned into an abscess. They had to drain it and put me on antibiotics. I also had a hole in my esophagus but they weren't sure exactly what it was from. They had to do surgery on it alongside putting drains in for the pneumonia and infection.

Since then, I’ve been in and out of the hospital 3 times due to respiratory infections; one in April for 3 days and two in June. There are many causes for respiratory infections and it’s even harder for someone on a ventilator to avoid and/or get rid of them with simple antibiotics. This is what caused many of my hospitalizations.

My most resent and 5^th hospitalization was from December 9-12. At first, we thought it was due to a respiratory infection. I was on multiple medications and nebulizers prior to being admitted but nothing seemed to help. One day before, instead of green secretions I started suctioning up bright red blood and clots. This was clearly not the infection I thought it was.

During my admission, they were able to determine that I no longer had an infection and the blood was not coming from any sort of abrasion in my lungs that they could see. Good and bad news. In the end, the ruling was that I had a blood vessel in my lower right lobe that burst/broke open which caused the bleeding. Either it was going to heal by itself or they would have to go in and cauterize it. Luckily, they sent me home and within a couple of days the bleeding stopped.

In the beginning of the year when I got sick, I wrote this when my body took over my mind: “I’m sick of being sick. Not only is my situation frustrating, difficult, stressful, and painful it’s emotionally and physically exhausting. I’m surrounded by things in which I cannot control and that includes my own body. I am paralyzed from the neck down and I’m struggling while dealing with the constant downhill battle I’m being taken on.”

What I wrote simply explains exactly what I feel like sometimes, especially when I’m unable to control the things around me. That includes my own body and health. I’m sure that others in my situation may have similar feelings. The past couple of years have been like nothing other for me as far as sickness goes. Aside from my initial six-month stay in the hospital post accident, I’ve spent a lot of time recovering my body and restoring my health.

Unfortunately my lungs are not as strong as they used to be. I’m not able to handle being outside and going as many places like I wish I could. It doesn’t help being on a ventilator 24/7 in which I’m prone to chronic infections. I have to be very careful about what environment I’m in and not expose myself to anything that may harm me. This also means staying indoors during the cold Minnesota whether, which doesn’t help satisfy my need to break free from my house once in a while.

I wish I could’ve been able to blog and update more often but with everything that’s gone on, this post alone took the last couple months to write! That’s a long time for me considering how much I love to write and the dedication I have for updating everyone. I’m hoping for a strong recovery, making sure that I stay well in order to avoid sickness and hospitalizations. For now, I will continue to do as much as possible and blog within my capabilities.

Also, my blog looks a little different than it did before. I’ve been unable to design it how I like so I went with as basic as possible even though there are some things that look off.

 

Jenni

Surgery on My Neck: Post-Op

I ended my last blog post talking about the pain in my neck along with my surgery options. Well, let’s just say things didn’t go quite as planned. As I wrote before, I opted for the larger surgery because of the long-term benefits and decided not to go ahead with the small surgery. Surgery was on May 6 although my stay in the hospital was more than the initial intended time of 3 to 5 days. I got home from the hospital May 13 and have been in the recovery mode. I spent a little over a week in the hospital due to a few setbacks during the procedure. 

 

The two surgeons that were working on me were an orthopedic surgeon and neurosurgeon, I couldn’t have asked for a better team. The problem came across when they opened me up and saw that the bone spur was bigger than they expected. The team was also worried about spinal fluid leakage along with baclofen leaking because that’s right around the area that the catheter sits for my baclofen pump. After removing the spur, they put the "plug" in place as planned and then instead of doing the larger surgery they did the smaller one (both surgeries explained in previous post). I spent 4 hours in surgery as opposed to the 12 originally set aside.

This is what the bone spur looked like from a CT scan. It's the white pointed spot between C4-C5 (towards the middle of the picture) that was facing towards my spinal cord. Since they've removed it, I've had significant less spasms and pain relief even though things didn't go as planned.

 
The surgery for the actual fusion (originally planned in the first one) from C4-T3 has yet to be rescheduled. I’m still recovering from this one, especially only being 3 ½ weeks postop. I have to wear a neck brace 24/7 hopefully only until my postop appointment on June 23. I missed my first appointment on May 18 because I wasn’t able to sit in my wheelchair for more than a couple hours. I’m still working towards being in my wheelchair for the length of time I used to (about 10-12 hours) but it’s a slow process. My body can only handle so long before I have to get back into bed. Right now though I am up to about 6 and I’m slowly increasing every day.

This is the view from my patio that was recently built. The picture also shows the neck brace I have to wear.

Recovery and rehab time/process afterwards is always unknown in these situations but I’m hoping it won’t be too much longer before I’m back to normal. I've been trying to get outside when it's nice even if it's just sitting on my patio. Although, my dog Brody sure loves his walks so I've been taking it slow rolling down the streets with him! Like I stated above I’m not sure when I’m going to have the actual fusion; I guess I’ll have to decide that at my postop. I appreciate all of your thoughts, prayers, and concerns. Please don’t hesitate to ask questions and I hope to fill in more details as they come along.

Jenni

Surgery on my Neck

It is common for many individuals with SCI to experience chronic or acute pain. Given our situations, we usually require the use of a wheelchair. This means lack of movement, possible curvature of the spine, along with pain resulting in posture and positioning.

For a long time I’ve had this pain on the left side of my neck between my spine and my shoulder blade. Sometimes it aches, but most of the time it’s a very sharp, deep feeling. For the past several months my pain has increased into my right shoulder/neck, my arm pits, and along my spine. Although my spinal cord injury is at C-1 C-2, it is incomplete. I’ve been told that I have incomplete sensory and motor (some feeling and movement) below the level of my injury. Some people have one or the other or neither depending on their injury. In my case, I can feel pain in my neck and back; it’s good because then I know when something’s wrong but it’s bad because it hurts. I do have a high tolerance for pain because it isn’t at a full affect.

We had been trying to locate the source of my pain, linking it to muscle tightness. Last year I saw a neurosurgeon to see if I could get some answers. He suggested a CT scan so he could see what the bones were doing. From the results, he determined that I have a bone spur. Because my spine is already fused from C-1 to C-4, it’s counted as one vertebrae instead of four. The pressure from it is pressing down on C-5. Ultimately C-4 and C-5 are trying to fuse themselves together creating a spur. 

In order to fix the problem and take the pain away, the doctor gave me a few options. One would be to leave it alone and try to manage it with medication and/or more therapy. The other two involve surgery; one small or one large. The small surgery would consist of taking out the bone spur and then putting a "plug" in place of it. Then a metal plate would be attached to help keep the plug in place. The surgery would only take a couple of hours and I would be in the hospital just a few days. 

The larger surgery includes the exact same procedure, but afterwards he would fuse a larger section (C-4 to T-3). This would prevent the same thing from happening in the future. The downside is the larger surgery is that I wouldn’t be able to move my neck. Having limited mobility in my neck already, this doesn’t really concern me. The upside is that it should take the pain completely away and also straighten my neck (my spine also curves and my head tilts to the left).
 

After some careful thinking, I opted for the larger surgery because of the long-term benefits. I told that doing the small surgery could result in a catastrophic failure and that’s the last thing I want to happen. My surgery is scheduled for May 6th and will last about 12 hours. I’ll probably be in the hospital anywhere from 3 to 7 days. Recovery and rehab time/process afterwards is unknown at this time but I’m hoping it won’t be too long! I’ll keep you updated as things move on afterword and how I’m feeling.

Jenni

Pain and Therapy

Continuing from my post before this…

Along with all of my spasms and tightness comes pain as well. I’ve upped my therapy during the week to double sessions (1 ½ hours instead of 45 minutes) to try to get things under control. I’ve also integrated more stretching during the day to help decrease my tightness. It makes it a little difficult to do things when everything’s going on at once and I’m having a hard time managing things in that department. I feel like I’m in a constant battle with my body. I’m not sure what else I can do. All I can say is my schedule is pretty booked already with therapy. I know I’ve talked about my therapy before but here is a look at my weekly schedule:

Monday: Massage 9 AM-10 AM
Tuesday: PT 8 AM-9:30 AM followed by Acupuncture for 45 minutes
Wednesday: PT Afternoon for 1 ½ hours
Thursday: Manual Therapy 8:30 AM (kind of like PT only a little different)
Friday: PT 8:15 AM-9:45 AM

Currently, I am looking into other options to figure out where my tightness and pain is coming from. I went to a Gillette clinic for a seating evaluation yesterday and the guy that did it told me it might be time for a new wheelchair! Not sure what to think this info yet; I’ve had this wheelchair for 4 years now. My last electric wheelchair died on me after 5 years so it’s definitely a real possibility and consideration. Does anybody have any suggestions on brand, style etc.? I have only worked with Invacare wheelchairs but I want something different. Any comments would be greatly appreciated!

Coming next post: more about me and what I've been up to; less about tightness and pain!

Health and Healing

I realize the posts this year have been far and few compared to when I started this blog October 2008. Between trying to stay healthy, doctor’s visits, managing my pain, doing physical therapy, dealing with the loss of a close friend, taking care of Brody, being a new aunt, volunteering etc. it has been difficult for me to complete a blog post. Oh, and did I forget to mention working? I will probably take the next few posts to cover everything so you’re up to date (I know I say that a lot but I really mean it this time)!

I have mainly been focusing on staying healthy. The last place I want to end up is in the hospital again. That means lying low keeping my body relaxed and comfortable. Although it seems that once I do, yet another infection or symptom comes in which I have to address it right away. Last weekend I started showing signs for yet another UTI; I was also having other symptoms of different infections. (Over the past couple of months, I’ve been on 4 different antibiotics in a row trying to treat what I believe to be the same UTI that just keeps getting suppressed by the antibiotics and then comes back a few days later.)

On Monday, June 23 after feeling sick Sunday and all night I ended up going into the ER. They took a few samples, made me wait in the waiting room for 4 hours, and then told me all the tests came back negative. I went home feeling like I wasted the whole day for nothing. However, come Tuesday morning I felt great and most of the symptoms had gone away (except UTI). I spent the majority of the week trying to get orders to bring another sample in. Finally, I was able to Thursday and the results were initially negative but then came back positive yesterday. So, yet again I’m on an antibiotic (this will make it 5).

Dealing with infections, being sick, pain etc. in my situation is very frustrating and difficult. It brings a lot of stress along with takes up a lot of my time. Not to mention my body doesn’t handle it very well. I get a lot of spasms and my muscles get tight making it hard to do range of motion and causing pain. It seems that one thing affects another and another and so on. This seems like a good spot to break… Next Post will be a continuation!

On the Road to Recovery

Well, I’m finally feeling back to my old self again.  The last 2 months have definitely taken a toll on me.  After a couple months of 3 separate hospital visits at Methodist Hospital due to grand maul seizures, a couple weeks of trying to clear a UTI (and still fighting it), and just getting over the 24-hour flu (that ended up lasting more than 48 hours) all last week.  I also started to develop an infection inside my lungs and trach which fortunately is starting to go away now on its own.

It’s just like one thing was happening after another and I wasn’t able to catch up in between each episode.  My body was worn down and unable to recover as quickly as it needed to.  Unfortunately, when one sickness happens, many other ones follow.  My immune system doesn’t function at a normal level and it’s harder to get rid of infections.  Lately, I’ve been really focusing on relaxing so I can maintain stability and be able to function properly.  Luckily I bounce back pretty quickly.  I’m hoping this is the last of my seizures and everything will continue to be normal for a while.

*Insert Updated Message*

I was just about to post this the other night (Saturday 4/19) when I started to become a little out of it.  I started to have multiple “mini” seizures.  I say it like that because they weren’t like the minute long grand mal seizures I was having within the last 2 months.  These ones were lasting about 15 to 30 seconds.  My nurse had to call 911, the nonemergency line, and I went back to Methodist Hospital.  My mom would have just taken me in our van because the seizures weren’t as bad. We realize that utilizing the ambulance isn’t always necessary, but my case is a little more complicated.  I was so unresponsive, unable to talk with any clarity, and very confused.  So it seemed like the natural decision just to use the nonemergency service to bring me in.

We found out the seizures due to going septic from a UTI that I had just got done writing about in the post above.  They admitted me overnight in order to give me IV antibiotics and fluids and because I was still having some seizures and unresponsiveness.  Luckily, they discharged me the following day because I was already hundred percent better due to the IV antibiotics.  I made it home Easter Sunday at 12:30 PM before the 20 guests that came over.  I’m now on the right medications and was able to enjoy a gorgeous 70°F Easter day with my family!

Hopefully within the next couple of upcoming posts, I’ll be able to update you on everything that’s been happening since I started getting sick and having seizures in February.  Thanks for your patience and I look forward to updating more!

Seizure Activity

On Wednesday, February 6 at about 1:45 AM my nurse was sitting at the desk when all of a sudden she heard my vent start to alarm.   She got up and rushed in and she quickly realized that I was having a grand mal seizure.  My arms were outstretched and twitching, my eyes were rolled back in my head and my eyelids were rapidly moving.  There was also foam coming out my mouth and my face was doing funny things as well. 

We have an intercom system throughout our house so she yelled from my mom to come down.  She raced down the stairs to find me unresponsive post seizure.  It lasted less than a minute; they were calling my name and my nurse was trying to do a sternal rub on me.  She did a quick assessment including taking my blood pressure, checking my oxygen level and pulse just trying to make sure I was okay.  Everything was pretty normal except when she checked my pupils.  She found that my pupils were very small (pinpoint) and non-reactive to light.  I was unresponsive. 

My nurse called 911 and they came, wheeled me out and brought me to Methodist Hospital.  I had blood coming out my nose and mouth from biting my tongue and cheek.  My nurse rode in the ambulance with me and my mom came shortly after to the hospital.  My eyes were open but I was still staring straight ahead and nonresponsive.  It is unclear whether or not the staring ahead was a petite maul seizure or if it was related to the grand mal seizure I had initially.  Around 5 AM I had another grand mal seizure. 

When I got to the hospital, they checked my CO2 and found that it was really low.  The normal reading is between 35 and 45; mine was at 7.  Within the next couple days after everything happened I was still not responding to anything. I was running a fever and one of the doctors came in and he said one of the causes could be that my ventilator settings were too high.  Basically, I was being over ventilated causing me to hyperventilate.  The technical term for this is called respiratory alkalosis.  What probably happened is that when my nurse turned me on my side the large leak that I typically have around my trach was somehow sealed off.  If this were the case, I was receiving my full breath coming in causing the respiratory alkalosis.

What is respiratory alkalosis?

Respiratory alkalosis is a condition that changes the balance of carbon dioxide and oxygen in the blood.  When you breathe oxygen (which is needed by the body to function properly) it is inhaled into the lungs and carbon dioxide (a waste product) is exhaled. Normally, these two gases are kept in balance by the respiratory system.  Respiratory alkalosis occurs when carbon dioxide levels drop too low.  This causes the pH of the blood to rise and become too alkaline which is what happened in my case.  Apparently respiratory alkalosis is associated with numerous illnesses and is a common finding in patients on mechanical ventilation.

Overbreathing is a sign that respiratory alkalosis is likely to develop. Low carbon dioxide levels in the blood also have a number of physical effects. These include: dizziness, bloating, feeling lightheaded, discomfort in the chest area, confusion, dry mouth, tingling in the arms, heart palpitations and feeling short of breath.  Finally, an affected person may have a seizure.  However, the NIH states that the risk of seizures is very low. They only occur in the most severe cases.  As far as the recovery process, once carbon dioxide levels in the blood are brought back to normal, the symptoms should disappear within a short period of time.  In other cases, the explanation is a general medical emergency.  At these times, the outlook can be more uncertain.

Before they knew the cause, they did all sorts of things to try to figure it out.  They put in a PIC line and started IV antibiotics.  They tried to do a lumbar puncture to test my spinal fluid to see if I had meningitis.  However, they weren’t able to go low enough because of my baclofen pump.  I also had an MRI, CT scan, blood drawn; basically they did a full work up trying to figure out what was going on. 

When they determined it was respiratory alkalosis they ended up turning down the settings on my vent.  Then they checked my blood gases in different positions to see where I was at.  They hooked electrodes to my head almost like a skullcap to measure brain activity and brain waves.  To help fix the problem right away, they loaded me up with seizure medications and were surprised when my EEG looked like I had taken a lot of drugs LOL. 

There were many funny things I did while on these meds.  In one instance, I kept trying to tell them to take the washcloth off my head (the EEG).  At another time, I was determined to have my nurse change the channel on the TV to channel 4 (I was actually looking at the monitor they had me hooked up to).  It was also interesting when the doctor came in to do a mental exam on me.  She held up a flashlight and asked me what it was and I got a big smile on my face.  I said “it’s a scapula”.  I also couldn’t verify my name or date of birth.  They didn’t fully understand in the beginning that this is not how I normally act; they didn’t really know my personality so my nurse was showing them videos of me on YouTube. 

In order to determine if I could eat/drink anything, that Friday afterwards they did a swallow study on me.  They made me swallow this nasty chalky tasting stuff.  It’s basically where they take a machine so they can see it go down.  Because of the state I was in, I failed miserably.  That’s when they decided to keep me on tube feedings to supplement my diet.  Before I was able to eat again, I had to do the swallow study again.  I was much more conscious and hungry for food!  The second time I passed with ease but had to start out with Jell-O, applesauce and other soft foods.

I went home on Monday February 10^th and tried to continue with my daily routine.  However, on Thursday, March 20 I had another seizure at the same time in the morning.  My nurse called 911 and I went in to the hospital again by ambulance.  After doing some tests, they couldn’t figure out what caused it.  This time, it wasn’t due to respiratory alkalosis; now I’m not sure if that was the only cause of the first seizure.  I was only in the ICU at the hospital for one night.  I went home the next day around 5 PM and continued my routine as normal trying to recover.  Yet once again, at the same time on the morning of Wednesday, April 2 I had a 3^rd seizure.  The same thing happened as the first 2 and I was admitted to the hospital again.  I was there overnight, discharged the next day and they still haven’t found a cause.

Unfortunately, each seizure has given me short-term memory loss.  The first seizure was the worst and I don’t really remember that week or a lot of the time I was in the hospital.  The other 2 were a little bit better, but not being able to remember things is difficult especially in my situation.  Even though I don’t remember things and my memory is a little fuzzy, I do remember how happy I was each time I was discharged.  I’m not a fan of the hospital even though I’ve spent so much time there.

As disappointing as is to have seizures in the first place, not knowing why they are happening is even worse.  Currently, I’m seeing a neurologist and she prescribed a seizure med for me while we try to figure out the reason why.  The biggest part is that seizures aren’t new to me.  I used to have them after my accident in the same way and was on a medication for them.  After 5 years of having them, in the beginning of 2009 I discontinued the meds after being seizure free for 2 years.  I never knew the reasons for them back then and may never find one for these.  The good thing is that I’m on medication for it now so hopefully they won’t happen again.

I look forward to posting more about what has been going on these past couple months within the next week!  Thanks for your patience.