A "Frequent Flyer"

A walking path in my backyard

I began writing this blog post 7 weeks ago, starting with: “I have written each post this year saying that I had just gotten out of the hospital, although I’m happy to report I’ve managed to stay out of there and at home relaxing with Everett. I did have a UTI the week before Labor Day, but thanks to some quick actions of getting on antibiotics, I was able to avoid it.” In my last blog entry, I stated “… I don’t like every entry to be about me being sick or in the hospital.”

Since October of last year, I've been in the hospital 6 times. That's a lot for me and takes a toll on my body physically and mentally. I also need to miss appointments and ABLE because it takes so long for me to recover after a big stay like that. Despite what I wrote, September 23 I went by nonemergency ambulance. After some testing, they found I had case of double pneumonia. I guess I knew the first day that I went in, but soon my oxygen went down to the low 70s even on 5 L of oxygen and I couldn’t maintain it. After that, they had to slowly sedate me to keep me comfortable because I was having high anxiety, trouble sleeping and difficulty maintaining breathing. I was sedated for approximately 4 days.

In the beginning, they gave me 3 Bronchoscopy’s, a CT scan, x-ray and tried 9 separate IV antibiotics until they found a combination of 3 that finally worked. Also, my lungs needed to relax and heal. They also had to monitor me better, so they put me on one of their ventilators. I was even trying to fight their vent (meaning it was giving me 20 breaths per minute, and I was bringing it to 25.)

From the start, it was just baby steps, 1 foot in front of the other (or should I say, one wheel?) Also, since coming home, I’ve been sleeping a lot; something I don’t do enough of. I know now when my body says “sleep,” it usually means that I need to rest and sleep whenever I can. By resting, accepting help from friends and family, and gradual actions to recover, I have the best plan in place to a speedy recovery. There were signs and symptoms that went on right before, that I now realize to be something to watch out for before things get too extreme.

If you’re reading this and live outside of Minnesota, throughout the summer, Canadian wildfire smoke significantly affected the state. The worst air quality was recorded in late July and early August. Some of them were issued for multiple days at a time. I couldn’t go outside when the air was bad because of my asthma and the fact that I’m on a ventilator. I have trouble enough as it is. Not being able to get out of the house is hard enough but when it is more than a week it becomes depressing.

This past spring I started the process of applying for a new wheelchair. I’m eligible for a new one every 5 years and I’ve had mine for 7 years. It’s a long and daunting process, sometimes taking over a year for insurance to cover everything I need. First, I had to have my Dr. write a prescription. Then, I underwent a wheelchair evaluation with a physical therapist aside my medical equipment supplier. Finally, I selected which chair I wanted along with what I needed it to do.

I ordered it to recline, tilt, legs to raise, change drives (making it speed up or slow down, elevate, and other things my wheelchair now can do and more.) Insurance approved everything so far, except for the seat elevation portion. That’s what allows me to raise my chair up and down. It’s easier for people working to reach my height. I appealed it, but I’m just waiting for their decision.

Labor Day weekend my boyfriend Jay visited me from Jacksonville, Florida. We met through my blog. After his T1/T2 spinal cord injury happened in 2019, he was searching for everything related to SCI’s, and that’s when he came across my blog. He made a comment on one of my posts, I responded, then less than a year later, we fell in love and have been together since 2020. We met in person for the first time, Labor Day weekend. He’s coming on Thanksgiving and Christmas too!

Jay and I in my backyard

According to Wikipedia “The Minneapolis Institute of Art (Mia) is an art museum located in Minneapolis, Minnesota, United States. Home to more than 100,000 works of art representing 5,000 years of world history, Mia is one of the largest art museums in the United States. Its permanent collection spans about 5,000 years and represents the world's diverse culture across six continents. The museum has five curatorial areas: Arts of Global Africa, Global Contemporary Art, Asian Art, European Art, and Arts of the Americas.”

I had so much fun! The last time I was at a museum was for a grade school field trip, and I don’t remember any of it. My nurse and I went, just to do something fun besides going outside, out to eat, to the mall etc. There are 3 floors, and we barely made it through one floor, the 2^nd. My favorite painting was (1 of 4) in Vincent van Gogh’s series Olive Trees. This is a photo of me between Claude Monet’s Grainstack (looking at the photo, on the left) and my favorite painting.

Jenni

Here are 2 of my poems:

Expansive Roots

My limbs are rough, full of brown bark

despite not moving by themselves

they may falter in times of trouble

as my presence in the world matters

 

While my cracks show in harsh winds

delving deep into their structure and use

in my trunk’s importance in this world

proving I matter in the ecosystem

 

My roots are an expansive link

embedded in the dirt of Mother Earth

where I feed my self-worth within times

when I’m strongly supported by my presence

 

I am connected to neighboring life forces

stemming out reaching for provision up top

engaging with my family of surrounding trees

to construct a forest of my ancestries

 

With every breath I stretch into the clouds

as my experiences in life are deeply felt

although I have a few tangles to work out

with each year adorned with a new ring

 

My protection is my bark and layers

covering me so you can’t see

any of my tragedy or loss I’ve endured

that comes with being a dead tree

Canadian Wildfires

The city groans as it chokes on dust

exhaling gray, drifting smoke

hazy skies and air-quality alerts

obscuring the sun, covering towns

Like a curtain dropping from the sky

Canadian wildfires pollute Minnesota air,

strangling every tree in sight

spreading freely through dense conifers

A silent hold upon the once crisp atmosphere,

outdoors is forbidden for weeks

difficult to contain, as health is strained

harder for asthmatics to breathe

Embers sweep into drought-stricken fields

delicate lungs copiously cough,

hushing children’s play through the disorder,

as orange flames leave farmers at a loss

I love Ambulance Rides

In a continuous blog post from the last one… Last week I had a seizure that lasted 15 minutes, along with 2 two-minutes seizures after. My caregiver called 911 which resulted in another trip to the ER in an ambulance. No lights this time though. While I was there, they checked my blood, chest x-ray, and other things that may have caused them. Although they couldn’t find a reason why, so I only spent 3 days in the hospital.

Unrelated to the above paragraph, every year Sister Kenny holds an art show where people can enter their artwork for sale. You can enter up to 4 pieces of all various types like watercolor, oil paintings, sculptures etc. This year my plan is to enter some of my watercolor paintings, although the deadline is March 17. I’m not sure if I will make that or not because I still need to pick out which ones I want, fill out an application, and upload pictures of artwork.

They also need to be for sale, but all proceeds go back to the artist. I have a collection, but I’m so attached to each one that it’s difficult to part with any. Although my dad pointed out that Picasso didn’t keep any of his paintings, which means I can always paint more aside from what I have in the past. I may just have to wait until next year when I can plan it out more in advance. Then I can create some new paintings instead of using some that I’ve already done. I’ll let you know what I decide to do and share the paintings that I picked.

Jenni

Pneumonia, Again

It’s been difficult these past 4 months. Last blog post, I wrote about being in the hospital due to pneumonia. Early December, I was feeling sick for about a week and spent a couple days in bed. It’s unusual for me not to get up in my wheelchair every day. I had low oxygen along with another seizure which brought us to the conclusion that it may be pneumonia again.

Since I couldn’t get up in my wheelchair, I went to the emergency room by ambulance. I was in the hospital for 5 days. The same pattern continued early January. I was also admitted for pneumonia, but I was in for 12 days instead of just 5. I ended up just going to the ER as it wasn’t urgent enough to go by ambulance. 

I’m always sad to cancel my appointments with ABLE. I can tell how much of a difference it’s making. I have gained a lot of experience and awareness of my body, including balancing upright using my core muscles. Over the past few years, my shoulders have been dropping lower in my sockets. One thing I’ve been doing differently at ABLE is focusing on a new set up to help put them more in place.

Other than the days I go to appointments, it’s difficult to go outside in the winter. This past weekend the temperature has been higher. If it’s above freezing, I start going for rolls with Everett. This week is supposed to be great as well.

Writing poems has taken all of my time up. You know how people are obsessed with Facebook, Twitter, Instagram, YouTube etc. I can officially say that I'm obsessed with allpoetry. Writing them and reading others is where I spend most of my time doing. I posted my recent poem below.

Jenni

Life as a Match

Born from a strike with a story to tell

scarring the wood that it’s made from

crackling through each sparking ember

a voice so fierce and wild with fury

Sharing mysteries from past times

behind shadows where ghosts can tread

the life of a single flame far too short

transforming a stick into lingering ash

Being in the Hospital Is No Fun

On October 15, I had 2 seizures around 8 AM. The first one lasted about 8 minutes, and the second one about 2. I’m on 2 seizure medications to prevent having one, but not if they are related to something. Since the first seizure lasted more than 2 minutes, the protocol for me is to call 911. I was completely out of it from exhaustion, but I do remember the ride to the emergency room.

When I got there, they did some testing to see what might’ve contributed to the seizures. First off, I already had a high temperature. Mine is usually around 97° and I was at 99°- 101°. They took blood, x-rays, CT scan etc.-anything that would help to figure it out. The results were a higher white blood cell count and pneumonia. We think pneumonia was what caused the seizures. In the past, I had seizures that link to bad infections like bladder or lungs.

I was in the ER for 3 or 4 hours and then they moved me to the ICU. I spent Monday the 15th-Saturday the 19th (my birthday) in the hospital. They put me on IV antibiotics, which helps get the infection under control faster than the pill form. Once I was stable, I was able to go home on oral medications. Before all this happened, I was having to suction quite often with colored secretions, so I knew something was going on.

It took a couple of weeks to recover after I got home. I was weak and couldn’t go to ABLE because it was hard to even function during the day. I was pretty much feeling the same as before everything happened, only not miserable so I knew I was on the mend to healing. After being so sick, it takes time for my body to bounce back to normal. I’m finally there, able to withstand being in my wheelchair for the normal amount of time along with my regular routine.

Also, it does take a while to create blog posts, since talking a lot on my computer can be exhausting sometimes. I’ve been writing this post on and off for a while now. I would’ve finished a while ago, but most of my time spent on the computer is writing poetry. I posted one of them below although you can also check them all out by clicking on this link: my poems

Jenni

“A hero is an ordinary individual who finds the strength to recover to persevere and endure in spite of overwhelming obstacles.”-Christopher Reeve

Inner Strength

After severing the sky with lightning

thunder roars inside me

as my strength gives way at times

when I struggle to live my life

Feeling unjust in times of trouble

and lost in crowds of people

where I can’t find my inner being

as I’m clouded by my ongoing paralysis

Hope is me holding onto an

unknown future in which I remain

calm within my feelings

realizing just how beautiful I am

Then a gravel path visibly opens

when my consciousness clears

in which I preside to roll down

to see where my beginnings live on

Recent Hospitalization Due to Fluid Retention

 At the beginning of the month, I got Botox injections in my neck again. I’ve talked about getting it in the past, and how it’s benefited me. I do feel a difference once they give me the injections. My muscles get looser, I’m able to move my head more and I don’t have as much pain as usual. The downside to getting Botox is that I need to get it every three months for it to be effective. Also, for me, my neck gets tight so quickly that it only really lasts about a month.

A few Thursdays ago, I had a video appointment with a nephrologist. Over the past couple of years, I’ve been talking to several different doctors with all types of specialties, trying to figure out why I have so much edema (fluid retention). Most of them have narrowed it down to one problem, low albumin. Here’s a definition of how low albumin causes edema. 

“Proteins in the blood tend to pull water into our blood vessels (acting like a "water magnet"). When the level of protein in the blood is low, water may leave the blood vessels and collect in the tissues. Water in the tissues is called "edema".” I’ve done multiple tests that look at where I might be losing protein, since I eat enough of it and also drink a protein shake a day. There is medication that you can take to help raise it, but I haven’t gotten to the point yet.

One way to shed the water from my tissues and help with edema is to take potassium-sparring diuretics. They are designed to help reduce fluid levels in your body, without causing you to lose potassium, an important nutrient. Although one side effect to going on a diuretic (otherwise known as Lasix) is that it can cause low blood pressure. In fact, many people take it to lower their blood pressure as they cause your blood vessels to relax.

Unfortunately, due to my spinal cord injury, I have low blood pressure. I’m actually on a medication to help raise my blood pressure, so going on Lasix is a huge risk to me. Although the nephrologist that I spoke to said that since I basically tried everything to help get rid of my edema, she would want to see how my body would react to me going on some sort of diuretic. In order to do so, she wanted me to go into the hospital electively and they would be able to monitor me closely while attempting to shed all the fluid in my body using diuretics through an IV.

They happened to have availability a week after my video appointment for me to go in and I would spend at least three days, if not more, to help achieve this. Afterwards, it would almost be like starting fresh, with little to no edema and she could see if I gain it back, how long it takes, and then figure out an action plan from there. I’m excited but nervous at the same; I want it to work, but I don’t know what side effects I’m going to endure. 

**The beginning post was written the day that I went into the hospital, but I never got a chance to post it. Here is an update after being in the hospital.

Upon arriving, I was admitted to a floor that specializes in nephrology. I also met with neurology, cardiology, internal medicine, endocrinology, infectious disease, pulmonology, urology, and the general doctors on the floor. Each doctor looked at different parts of my situation to try to rule out what could be causing the swelling.

As each day was passing, they became closer to narrowing it down to what it wasn’t and what it could be. I spent a total of 12 days in the hospital, more than I expected, but enough for them to narrow the problem down to two reasons. One would involve neurology, and due to one of my seizure meds and the other involve cardiology, and due to a rare condition.

They took me off one of my seizure medications called Depakote and wanted to follow-up with me after a few weeks. This would be to see if it would help with me losing some of the water weight. After being off it for a few days now, I think it’s helped a little bit. I noticed that I’ve been peeing a lot more, which is a sign that I’m losing fluids.

If this doesn’t work, then the only other thing they narrowed it down to is a rare condition called capillary leakage otherwise known as Systemic Capillary Leak Syndrome. It’s when fluids or plasma leaks out of your capillaries into your tissues. It results in low blood pressure and can be dangerous, if not treated. The reason why it’s so rare is because there are not very many known cases of it and there is no known cure.

I’m hoping that it’s just my seizure medication and not the latter. Although since being off the medication, I have seen an improvement in my weight, so that’s a good sign already. I will keep you updated as time goes by.

Jenni

Another Visit to the Hospital

I thought it was time for an overdue update on what I’ve been up to. About 7 weeks ago I was admitted to the hospital for pneumonia in both lungs and an abscess in my left. During my 5 day stay they gave me IV fluids, multiple antibiotics, albumin and a unit of blood. I went home on oral antibiotics and was feeling much better.

Since coming home, I’ve been trying to minimize my activity level, so I don’t wear myself out. The weather has been nice outside lately, so I’ve been taking Brody for a walk and roll as much as possible. This is aside from going to all my Doctor appointments. So far since the hospital visit, I have seen my Pulmonologist, ENT, OB/GYN, Orthopedic Dr., Primary doctor and had a CT scan.

Earlier this week, my doctor wanted me to have a CT scan to make sure the pneumonia was clear. Even though I'm feeling much better, the results came back showing that I still have a small abscess in my left lung, so they put me back on antibiotics. Hopefully soon everything will clear up and I will be infection free. The last thing I want to keep talking about is my health!

Jenni

Winter Update

I have been hearing a lot of people telling me how much reading my blog posts, along with updates, and inspiring others means to them. I decided it’s time for a well needed, overdue post. I noticed that every time I started one, for some reason it’s like I have writers block even though my life is filled with things to talk about. So finally here it goes…
 
First off, for unknown causes, about 4 months ago I injured the inside of my left knee. After an x-ray, there was no apparent bone fracture or break so the orthopedics thought it was a ligament sprain. They gave me a cortisone shot thinking that would help and then checked back with me regarding it. If the pain were to continue, I would’ve had to get an MRI to see if it was something more severe. I wasn’t able to bare weight on my leg because of it and it disrupted my standing schedule of 30 minutes every day. I have slowly worked my way back up to that amount of time and my pain is off-and-on depending on certain positions.

Next, I last wrote an update in June regarding my health. About 2 months ago I got another respiratory infection. This time I caught it early enough to where I just went on some antibiotics and didn’t end up in the hospital. The course was for 2 weeks and I’ve been pretty stable since it cleared up. It’s very difficult on my body and wears me down when I’m sick.

Unfortunately, almost a week before Thanksgiving my grandpa passed away. He was my mom’s dad. It wasn’t exactly sudden; he was living in a care facility for a while before that. We held a memorial service for him a couple of weeks ago and I had the privilege of sharing a Bible verse. I have a lot of memories of us, especially when I was younger. He will be forever missed in our hearts!

Last week the temperatures were hovering around 40°F. I took my dog Brody outside for a couple of short walk and roles. The first day, he was practically pulling my wheelchair like a sled dog! Since the weather’s been so nice out we didn’t have a "White Christmas" except for the little bits of snow already on the ground. Although the temperatures started dropping along with some snow, then rain a couple days ago.

Since my accident, we’ve been hosting Christmas every year. So we had family over Christmas Eve and Christmas day. It’s kind of nice having everyone come to us. I didn’t ask for anything in particular this year. I’m at that age where I find it more fun to give gifts than receive them. We also play the dice game as a family so it’s less pressure to buy a gift for everybody. I did receive

Hopefully I will be able to write more in the future. I realize now how much people want to hear about what I have to say or what I’m up to. Be sure to keep checking back to see more posts coming soon! Also, feel free to leave a comment and give me feedback.

Jenni

“Learn to enjoy every minute of your life. Be happy now. Don't wait for something outside of yourself to make you happy in the future. Think how really precious is the time you have to spend, whether it's at work or with your family. Every minute should be enjoyed and savored.”

-Earl Nightingale

Summer Update

It’s the beginning of summer already and I can definitely feel it in the air. The temperatures outside have been hot with lots of humidity. With the highs being above 90°F, it’s difficult to get out, especially when the heat index is over 100°F. There also were a couple of days where there have been heat advisories or warnings to where they don’t recommend you get out of the house.

On those days I don’t go outside, although I do try to get out every day to take Brody for a walk. I mostly stick to the shade, just going down the street and back. I’m usually only outside for no more than 15-30 minutes, which is plenty of time for him to get some exercise and also me some fresh air. It’s better when there’s a little breeze to help cool things down. When it’s cooler out I go for longer walks.

Other than getting outside, I have been trying to stay healthy. Last month I ended up in the hospital for 5 days for pneumonia again. I’m finding it more difficult to stay away from that place of being sick all the time, especially over the last couple years. Now that I’m feeling better, it’s harder for me to get out places knowing that’s what may cause me to become sick.

As of other things, following up with the edema that I was talking about last fall, I’ve been seeing more doctors about it. They narrowed it down to me having low albumin (loss of protein) although I haven’t gotten any answers as to how to change it. I’m going to see a nutritionist in a couple of weeks. One doctor suggested protein powder to see if that helps. Even though I do eat foods with protein, somewhere it’s getting lost.

Another thing she that I have been working on still is standing in my wheelchair. I have been trying to do it every day for at least 30 minutes. That all depends on what my blood pressure is and how I’m feeling. I take my blood pressure about every 5-10 minutes to make sure it’s not dropping. I usually just watch TV while standing. It’s difficult to go on my computer because I need to do as little talking as possible so it doesn’t drop.

For now, I’m going to continue to go outside when it’s nice. My goal is to avoid sickness and steer clear of the hospital. I’m also going to try to figure the cause of my edema. Hopefully it’s not something any more serious.

Jenni

A Trip to the ICU

I just wanted to give everyone an update on my health. Last week on Wednesday night, I had symptoms of hypotension (low blood pressure) and high rate also known as tachycardia. This is opposite of how my body is during the night while lying in bed. Thursday morning I decided to go into the ER to see what was wrong. They had to bring me by ambulance because I couldn't sit up in my wheelchair due to the low blood pressure. In order to use the stretcher, they had to come down the side of my house to bring me out.

Since it was still covered with snow and thick ice, it couldn’t be hand shovel. When the cops got here first, they called the fire department to shovel it out. In the meantime, a nonemergency ambulance showed up and another EMS team to help bring me out. Once I was finally in the vehicle they hooked me up to oxygen and I was able to bring my home ventilator with me which was nice. I forgot how bumpy those ambulance rides are!

When I got there, they did a chest x-ray and an EKG of my heart. Based off the results I was admitted to the ICU. I stayed overnight on IV antibiotics while they monitored me. Friday morning I had a CT scan done and a small infection was found in my lungs. Then they did a bronchus copy of my lungs which will indicate what strain of bacteria it is.

I was discharged Friday evening and was feeling much better. Saturday during the day was the same although during the afternoon and throughout the night I started needing oxygen for support along with multiple suctioning. However things turned around Sunday afternoon and right now I'm only using oxygen when needed and feeling much better! Because the results weren’t back get yet, they prescribed me with a broad spectrum oral antibiotic so hopefully I continue down this path without intervention.

Please keep me in your thoughts and prayers as I still have some healing to do. Thanks!

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

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.