Monday, March 31, 2014

Birthday Party x Four

I've been so busy lately with my surgeries, going to doctor's appointments and preparing a talk for my church's stake conference, all in addition to trying to stay on top of all of the other things I'm involved in that I've neglected my blog lately. So now I'm trying to catch up by making some posts about a few things that happened earlier this month.

At the beginning of March I saw my sister Sharon and her family when they took a trip over spring break. Three of Sharon's six kids have birthdays in March, and another one has a birthday in April, so we had a combined birthday party for them.  My mom tried a new cake recipe… it was good, but we all agreed that the recipe wasn't worth saving.
Three out of four of the birthday kiddos were sick, so we left it to Sharon to blow out the candles to prevent germs from being blown over top of it. We made sure she held her hair back and she and my mom reminisced about Sharon's 9th birthday when she caught her hair on fire while blowing out her birthday candles. Thankfully that's never happened again!
After dinner we opened birthday presents. Here's Sharon with little Poodle, and Kate with the Webkinz owl she eyed while shopping at Hobby Lobby with my mom and sister when they went shopping after Christmas. My mom went back and bought it and got an awesome deal on it. [I didn't know what Webkinz were until a couple years ago. They are toy stuffed animals that have a playable online counterpart in "Webkinz World". On Webkinz World the user is able to own a virtual version of the pet for online play.]
To say that Matt is all-boy seems like an understatement when you consider his love of all things tool/lawn equipment (read more about "Manly Matt" in THIS cute post). My mom and I decided to get him a toy weed whacker, or "bee-whacker" as Matt refers to it. I'm not sure why, but he also calls his lawnmower a "blawnmower." :) Anyway, Mattie loved his present!
I gave Rachel some reusable sticker books (where were those when I was a kid?!) and my mom gave her a puzzle and a Pinkalicious book.
My mom gave Emi a pounding bench and I gave her a little dress, which she looks adorable in, I might add!
Matt and Emi are so cute together; I'm glad they're such great friends! It's hard to believe they are 4 and 2 already! 
Yay for birthdays; they're always much more fun when you can celebrate them with family!

Saturday, March 29, 2014

Stone Free At Last!

I'm happy to say that I'm kidney stone-free for the first time since 2012. Woo-hoo! It's been a long road and one that's probably complicated to understand if you're new to my blog. Basically, I've had hundreds of tiny, sand-like kidney stones in my left kidney for the past few years and my urologist wasn't sure if it was better to just leave well enough alone since the procedure to remove them nearly killed me when I had it done in 2007 or if removing them before they grew would be better. In recent months I had been starting to have more complications, so my urologist recommended that I see his colleague to get her opinion since she's a kidney stone specialist. I met with her at the end of January and she suggested doing the procedure to remove the kidney stones, so I had it done in February.

I'm finally able to close the book on the kidney stones for now (well, this chapter anyway, since there will likely be more kidney stones in my future). I went in for my follow-up appointment two days ago and had the stents removed from my kidneys and my doctor said that everything looks great. All's well that ends well, as they say. I'm so thankful to be stone-free again!

Book Recommendations

My mom and I have read some good books together lately that I've I'm been meaning to write about, but I've been so busy working on other things that I haven't had the time. So today you get three books in one post!

Last December we read The Boy in the Striped Pajamas by John Boyne. Here's a short synopsis of the book: When Bruno returns home from school one day, he discovers that his belongings are being packed in crates. His father has received a promotion and the family must move from their home to a new house far far away, where there is no one to play with and nothing to do. A tall fence running alongside stretches as far as the eye can see and cuts him off from the strange people he can see in the distance.

But Bruno longs to be an explorer and decides that there must be more to this desolate new place than meets the eye. While exploring his new environment, he meets another boy whose life and circumstances are very different to his own, and their meeting results in a friendship that has devastating consequences.

This book was about the Holocaust and it was told through the eyes of a child. This offered a different perspective on the Holocaust than most books I've ever read about it. It was well-written and I really enjoyed it. After my mom and I finished reading it we watched the movie. It was also enjoyable, but not nearly as good as the book since so much of the storyline was left out and/or changed.
Last year I heard about a memoir entitled Twelve Years a Slave (by Solomon Northrup) that was being made into a movie. It sounded really good and I knew it was right up my alley when I found out it was a true story and I knew I had to read it. Here's a short synopsis of the book: This unforgettable memoir is the basis for the Academy Award-winning film 12 Years a Slave. This is the true story of Solomon Northup, who was born and raised as a freeman in New York. He lived the American dream, with a house and a loving family – a wife and two kids. Then one day he was drugged, kidnapped, and sold into slavery in the deep south. These are the true accounts of his twelve hard years as a slave – many believe this memoir is even more graphic and disturbing than the film. His extraordinary journey proves the resiliency of hope and the human spirit despite the most grueling and formidable of circumstances.

This was also an excellent book. Knowing that it was true made parts of it really difficult to get through because there were some horrific accounts of the way the way the slave owner brutalized his slaves. As much as I would love to see this movie, I don't think I could stomach watching the vicious attacks depicted on screen. It just makes me sick thinking how anyone could treat other human being so deplorably. This master looked at his slaves as being less than animals and treated them far worse than the animals he owned.

Solomon kept his identity (of being a free black man) and the fact that he could read and write a secret from everyone the entire time he was enslaved since this would've put an even larger target on his back. It was apparent from Solomon's account that he was extremely intelligent and even though he didn't write his story until years later, he was able to recall facts, names, places and dates with remarkable clarity. Solomon was such an articulate writer and his book was so good.
Last month my mom and I started reading The Glass Castle by Jeannette Walls. Here's a short synopsis of the book: The Glass Castle is a remarkable memoir of resilience and redemption, and a revelatory look into a family at once deeply dysfunctional and uniquely vibrant. When sober, Jeannette's brilliant and charismatic father captured his children's imagination, teaching them physics, geology, and how to embrace life fearlessly. But when he drank, he was dishonest and destructive. Her mother was a free spirit who abhorred the idea of domesticity and didn't want the responsibility of raising a family.

The Walls children learned to take care of themselves. They fed, clothed, and protected one another, and eventually found their way to New York. Their parents followed them, choosing to be homeless even as their children prospered.

I've seen many people mention The Glass Castle on their blogs and/or "to read" lists, so I've been meaning to give it a go for a while. I'm glad I did because I loved it! Jeannette's upbringing was so unusual that it made for a compelling read. I'm amazed that Jeannette turned out as well as she did since her parents didn't know the first thing about caring for children. Her mom and dad were both extremely selfish and sadly, their children weren't their first priority so the kids were left to fend for themselves much of the time. I enjoyed this book very much, though, and I'm glad I read it. It reminded me of another excellent book that I loved: A Tree Grows in Brooklyn

*I cannot in good conscience recommend The Glass Castle without mentioning the fact that it does have quite a bit of language in it, some of which is strong at times and/or the Lord's name is taken in vain. I just wanted to make that clear so that you can steer clear of this book if that would bother you. Trust me, it bothers me, but fortunately my mom skips the bad language. 
We've all been told not to judge a book by its cover, and I would say the same for this book. It's really a gem of a story that's hidden within a simple, unremarkable cover.

Tuesday, March 25, 2014

Final Thoughts

Okay, one last post on my surgery and then I promise I'm finished! I just have a few last thoughts I wanted to cover before I put my hospital narrative to rest. The first thought is about friendship. Friends make all the difference when you're going through a difficult time. There's just nothing like visiting with friends to help the time pass a little quicker and to make you feel more normal! I don't have a huge group of friends, but the ones I do have are sure gems!

On the day of my surgery my friend Lacee was off work so she sat with my mom while I was in surgery, and then she stayed and visited with me for a few hours after my surgery was over. Of all my "pre-accident" friends, Lacee is pretty much the only one that I still see on a regular basis. Most of the others have either stopped visiting or have just become "Facebook friends." Lacee is loyal with a capital "L" and is a great example to me of how to be a good friend.

On Wednesday evening my sister Chandra came to visit since she was off work. I'd been missing her since I only saw her for a couple of minutes on Tuesday. She smuggled a pizza into the hospital which really hit the spot. My friend Laura also came to visit that evening and it was great to see her since it had been a few months since I'd seen her last. As Laura left my friends Debby and Curt came in. They are just a hoot! What they say about laughter being the best medicine really is true!

On Thursday morning my friend Kellie stopped in. Her visit was unexpected since I didn't know she was coming. She couldn't have come at a better time. Thursday was a really discouraging day since I found out I wouldn't be able to go home that day or the next. She brought my mom and me four big cupcakes from a cupcake shop. I wasn't allowed to eat at the time, but Mom and I did enjoy the cupcakes later on.

On Friday I was able to Skype with my sister Annette. We usually Skype one or two afternoons a week and before I went in to have my surgery we set a tentative Skype date for Friday since I was sure I would be home from the hospital by then. Well, that didn't happen, but since my mom had her iPad with her we were still able to Skype. Annette (and her daughter Rebecah) were both sites for sore eyes and talking with them really cheered me.

On Saturday morning when I was twiddling my thumbs waiting to be discharged, Lacee's husband Ryan stopped in. (Lacee sent him on her behalf since she was out of town.) I was so surprised to see him because he has a strong aversion to hospitals. (Seriously, just the smell of hospitals is enough to make him woozy, and a few years ago when he and Lacee visited me in the hospital he got so light-headed that he nearly passed out.) I was touched that he would brave the hospital all by himself just to come visit me.

Last year my mom bought an iPad with a little keyboard. My mom getting an iPad was pretty surprising because she's not the type of person that's up on all the latest technology/gadgets. But she thought having an iPad would be really nice/convenient if I were ever in the hospital (this was her number one motivation for getting one). She still had a way to stay in contact with people without having to leave me for long periods of time to search out a computer in one of the hospital's waiting rooms that wasn't in use. I tell you what, Mom's iPad came in SO handy! It help keep her occupied and it was so nice to receive little emails and Facebook messages from people. Getting those messages and well-wishes from family members and friends sure did brighten my day!

I don't look forward to the times when I have to have surgery or be in the hospital, but I always try to make the best of it. I go to a great hospital, and one of the best things about it is that it's a teaching hospital. (Barnes Jewish Hospital is associated with Washington University School of Medicine which is currently ranked as the sixth best medical school in the country by U.S. News and World Report. It has been ranked second two times in 2003 and 2004 and has been on the top 10 list since the rankings were first published.). I really like that I'm able to play a part in educating others and exposing them to different scenarios, just by being a patient. No, it's not the contribution to healthcare that I thought I'd be making when I decided to enroll in nursing school, but it's still something.

I love the hospital environment because I love learning new things. I've always had a fascination with the human body/medical things, and my interest has only grown over the years. I always watch everything that's going on around me (or that's done to me) with great fascination and I always ask lots of questions. I was a big fan of the TV show ER back in the day and have fond memories of watching it with my dad when he was still alive. I learned a lot of medical lingo from watching that show. I really didn't understand these terms/conditions at the time, so it's nice to learn what they are. (For example, pleural effusion and pneumothorax are both terms that I'm familiar with thanks to ER, even though I didn't really know what they were. After my most recent hospitalization I have a much better understanding (which you can read about in here and here).

I got such great care while in the hospital and everyone was so nice to me. I always try to be very pleasant/appreciative to everyone I come into contact with and I'm easily able to charm people with my pleasant personality. Being nice is my secret to getting such great care! I've noticed over the years that the resident doctors are slowly becoming younger and younger as I get older and older. It won't be long before the doctors are younger than I am! I will be 30 this summer and I wish I could physically freeze at that age forever.

Tuesday, March 18, 2014

Post-Surgery Pain

After I made my first post about my surgery and all of the pain I was in, several people asked me how it is that I can feel pain given the fact that I'm a quadriplegic. When you're paralyzed it doesn't necessarily mean that you lose all sensation from your level of injury on down. Some people do, but others don't, or they may have partial sensation. I, personally, can still feel head to toe which has its pros and cons. The major con is obviously experiencing pain.

When I met with my new urologist at the end of January we talked about doing the procedure to remove all of the tiny, sand-like kidney stones. I asked her what to expect as far as recovery time from the procedure since it was a more invasive way of removing stones. She said to expect a four week recovery, which really surprised me. I thought I would surely be healed and feeling back to normal in a week. The surgery was on a Tuesday and I naïvely thought that I would feel well enough to go to church the following Sunday. I definitely wasn't up for that since I'd just been released from the hospital the previous afternoon. I seriously underestimated just how much the surgery would take out of me!

When I came to after the surgery I was in a lot of pain. For the next several days any time I had to be moved (whether it was the doctors turning me to see how I was healing, or me having a bath or being repositioned) it hurt so badly! Every bump and jostle caused a surge  of pain. I tried several different pain meds from morphine to norco to oxycodone to toradol. Some of the drugs worked better than others, but nothing worked as well as I would've liked.

When I wrote about going to interventional radiology in THIS post I didn't write about how painful it was. (They removed the nephrostomy tube from my kidney and inserted a chest tube to drain the fluid from my lung.) They gave me some fentanyl to mildly sedate me, but I was still fully conscious the entire time. Every time they did something that hurt, my body would react to the pain by flinching or spasming. Sometimes the spasming/shaking would go on for a good 10 seconds before my body would relax and stop shaking. Then a minute or two later I'd feel another jolt of pain and the whole thing would start all over again. The next day the resident radiologist who had helped with the procedure asked me if I'd been experiencing a lot of pain during the procedure. I said, "Yes!" He said that they'd been surprised and had even given me extra fentanyl and pain medication, but I told him that it didn't really do much good. It's a good thing I have such a high pain tolerance and that I'm not a lightweight when it comes to pain.

Today marks four weeks since my surgery and I'm still in pain. The deep, internal pain has mostly subsided, but I still have a considerable amount of superficial pain on the surface of the skin which surprises me considering the fact that it's been a month since the surgery. My left side has been hypersensitive ever since my accident, but the surgery's just made it worse. When I first got home three weeks ago I would wince in pain any time my skin was touched while being bathed or dressed. Things are slowly getting better, but being touched is still quite painful. I guess the doctor was right on when she said to expect a four week recovery!

I hope this helped clarify everyone's questions about my pain.

Monday, March 17, 2014

Turning a Corner and Heading Home

I've had lots of extra things to work on lately, so I haven't had near as much time for blogging. I'm finally making the time to finish the story about my surgery/hospitalization from last month. (You can read the first two posts I made HERE and HERE if you need to recap.)

Friday morning dawned much brighter than the previous day. When the doctors rounded in the morning they checked the drainage from my chest tube, and I was surprised at how much drainage there was. When the doctors had said that I had a "small" pleural effusion that needed to be drained I was expecting maybe 50 cc's of fluid at most, but a cup and a half of bloody fluid had drained out. (It made me wonder how much fluid there would've been if I'd had a "large" pleural effusion!) Since all of the fluid had apparently drained from my lung one of the resident radiologists came and pulled the chest tube. (And when I say "pulled" I mean as in, "one...two...three…pull!") "Ouch" is all I have to say to that! It wasn't pleasant, but fortunately it was over quickly. My white count was finally back in the normal range now that the fluid had drained, which was a really good sign. As badly as I'd wanted to go home the day after my surgery, I guess it was a good thing that I hadn't since I most likely would've had to be readmitted to the hospital.

My doctor came to see me on Friday afternoon and she said that I was looking a lot better. She said that there was a possibility that I could maybe go home that afternoon, but she didn't seem completely comfortable with the idea, so I said that I would stay until Saturday. At that point things really did seem to be going in the right direction, so I felt optimistic that I would go home the next day.

On Saturday morning I had to get one final chest x-ray just to make sure the pleural effusion was better. They usually just bring the x-ray machine right to your bedside, but for some reason I had to go to the radiology floor to get it done (maybe to get a more thorough x-ray). I always get annoyed when I have to go somewhere because it's always such a process, but this trip was actually a breeze. It was very quick and the patient transporter that had to take me to and from the x-ray was so nice. (Usually the transporters are just there to do their job and they usually just talk amongst themselves and don't really go out of their way to be friendly with the patient. That's always been my experience, anyway.) This transporter was so nice and personable, which I appreciated.

When the doctors looked at the x-ray they said I might have a pneumothorax (which is air in the cavity between the lung and the chest wall). My heart sank when I heard that because I desperately wanted to go home. A few minutes later the doctors came back around and said that there was a mix up with the x-rays and that mine looked fine. What a relief that was! I got the free and clear to go home a little after 9 that morning. Getting discharged from the hospital always a long time, but it takes forever on the weekends since things move at a glacial pace! They said to hold tight for a few hours and that I would hopefully be able to go home about noon. Well, things always take longer than they say to expect and I wasn't discharged until after 2, but thankfully I was finally able to break out and head home!

(I have to say that weekends in the hospital are the absolute worst. A lot of the main doctors aren't working and things just seem to be at a standstill until the next week starts. There's just a completely different feel in the hospital on Saturdays and Sundays. It's hard to explain what the difference is, but any time I've ever been in the hospital, the weekends always have that same "weekend" feel about them.)

I know that spending five days in the hospital doesn't sound that bad, but I just hate being out of my normal environment/routine. I'm a busy person, and I don't have time to waste languishing in a hospital! All's well that ends well! And in all reality, I guess I got off pretty easy. My mom's friend had the exact same procedure done a week after I did (with my same doctor, ironically) and she developed a lot of complications and ended up being in the hospital for nearly two weeks, and is now staying in a rehab facility while she gets her strength back. 

Friday, March 7, 2014

The Need for an Advocate

I've been meaning to get back to the blog posts I was writing about my surgery/hospitalization, but I've been swamped with things going on this week, so I haven't had a chance yet. In the meantime I will leave you with this short post:

My mom stayed with me the entire time I was in the hospital (including overnight). Even though she got her own bed to sleep in, the hospital beds are really hard, so it's really not the most comfortable for her, that's why I was so appreciative for her [continued] selfless service to me. You might be wondering why I need someone to stay with me when I'm in the hospital where I'm surrounded by healthcare professionals. You might thinking, "isn't that what the nurses are for?" The nurses on the floor are familiar with caring for able-bodied patients, not for someone who is physically incapable of doing anything for themselves. And even if they were familiar with caring for paralyzed people, they've never cared for ME and they wouldn't know how to position me the way that's comfortable for me.

Another reason why it's such a must to have someone that really knows me well stay with me in the hospital is because I need an interpreter. Honestly! That's what it feels like, anyway. I have a really quiet speaking voice to begin with, and then when you factor in how dry my mouth gets when in the hospital (a combination of the effects of anesthesia, antibiotics and the dry hospital air) that makes it even more difficult to speak than it already is. Much of the time during my hospital stay I either whispered or mouthed words. I literally had to call my mom over at times to interpret what I was trying to say to people. A lot of what I tried to say ended up getting lost in translation on the journey from my lips to other people's ears.

[It gets easier to understand/hear me once you've been around me long enough and have learned how I talk (since I have to pause and wait for my diaphragm pacer to give me another breath when I run out of air). But when people first meet me or if I'm in a loud/crowded room where my voice doesn't carry, an interpreter is a must! I know it kind of sounds funny since we're all speaking the same language, but it's the truth!]

I was so grateful to have my mom stay with me in the hospital because everyone needs to have an advocate with them (especially if they are in a vulnerable situation).

I promise there is more to come, but just be patient with me since I've got a lot on my plate. Have a nice weekend everyone!
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