Bed☆Rest☆Mommy

Before we continue on, let’s go back and cover some of the appointments and experiences I’ve gone through up to this point.

Tonight lets start with the myleogram. Some information on a myleogram for those who do not know what it is:  Go here if interested.

I was nervous as can be when the big day arrived. A needle going into your spine didn’t sound like appealing at all! But, the day went better than I could have hoped it would. I had a wonderful man with me that day, well, make that two, Mike  (my hubby) and the Radiology nurse who looked after me that day, his name was Daniel. He was very good at his job, and told me what a wonderful patient I was. That it’s refreshing to come along patients who do make the best of the situation. Which, I did, in my own goofy way. I was pleasant, despite the pain, and even made a few small jokes, that seemed to amuse them and the docs.

At one point, when they got the first xray up on the screen so they could monitor where the needle was going, they all froze, eyes big and looked at me. Which made me say, did I do something wrong? This got a chuckle and the response of, no honey, it’s just not every day we see a case like yours. Things paused from there, as the stand in doctor went back into the hall and came back with a 3rd year resident. Who, kindly asked me if he could sit in and observe. I said, sure, if you answer a question for me. He looked puzzled, and said, yes. I asked him, is being a resident anything like they show on Greys Anatomy? I kid you not, this skinny (cute btw) resident got a very good laugh out loud response out of that, and replied with, well, the drama is definitely there!

So, on with the test. They finished prepping me, I had to lay on my stomach with my feet in straps. With the numbing, I wouldn’t say it was downright painful, but I could feel mostly a lot of pressure, the pain did come here and there as she worked around the mess in there and went farther in. But I kept it together, took my deep breaths. And in went the dye. Then, they had to tilt the table forward (me being almost upside down), then backwards, (me being right side up) and I had a washcloth under my neck at one point, to keep the dye from going to my head, or something. The whole positions were pretty uncomfortable.

Ok, with all that done, off to the cat scan room. I have to say, cat scans are way much better than an MRI, you’re not as closed in, it’s not as loud. And kind of amusing to watch the lights and window thing that spun around and around. And speaking of spinning, before I got off the gurney into the machine, they had me roll 3 times. I then joked that I felt like a martini. Why I picked that drink of all choices is beyond me, I’ve never even had one. hehe.

After all was said and done off to observation I went. I was greeted by Mike, who fed me a Mr. Goodbar, hot chocolate and gave me a stuffed animal (a huskie dog!)

It was a long, painful ride home. We stopped and attempted to eat, I called back a dear friend who left me a message for the big even, to let me know I was being thought of. And made it home to get through the recovery of it all. It left me with a horrible spinal headache for 9 days. But the ending results were worth it, for as mentioned in my health history post, this is where we learned about the many, many fractures in the bones in my back.

Tomorrow we’ll cover the ENT consult… now that was unpleasant in a completely different way.

Every day on bed rest has it’s challenges. Some may say, woo! Vacation time, hand me a remote/book/laptop etc. and I’m set! Yeah, sure… That’s all fine and great for a day or two… Okay, maybe even three.

Eventually though, reality sets in.  And you realize you’re starting to feel antsy. What devices can I keep myself sane with? Then, you start to feel stubborn. Oh, a little bit of cleaning just in this room - oh, no one will notice if I pick that up real quick! One time to vacuum, the kids just cannot play on that dirty floor!!

But with each bend, each movement, you also realize just how bad it really does hurt. The same thing falls under the medications. ‘Ah, I can skip one.. an hour later, holy cow - ouch!’ Yes, here you learn all around that you really should just start following the doctors orders.

Sometimes you still slip, but you get better at behaving. But it doesn’t get any easier. If anything, it gets harder. You start to feel like no one can relate to what you’re going through inside, more mentally than physically. And why we respond to things the way we do. Why we feel we must hold on to the little bit of control that we have left. At least that is how I am feeling right now.

It’s just like the old, the more you’re told not to do something - the more you seem to want to do it! Stubborn creatures we are.

In the end, stubborn or not - we learn patience. We learn we goofed up on some things, and try to do it right from there on out, and we learn to let go, because really- deep down we know what is really good for us, but we’re human. And we’re going to slip, and we’re not always going to do things the right way. But when we slip, it’s nice to have support, wonderful kids and a husband that gets so mad at you, because underneath it all, he just loves you that much. Now if I can just get said husband to talk to me.

And with that, this is bed☆rest☆mommy, signing off  with a little more clear vision than before, and a promise to see you all tomorrow.

Hello!

Welcome to Bed☆Rest☆Mommy! My interest in this blog is to share the challenges and fears that come along with having a severe health condition that has me on bed rest, while I await a very intensive 2 day surgery. I’ll be sharing all emotions that come along with this, plus other random posts about parenting in general. But without a little history, this could lead to some very confused readers!

Before I get into the history of what has brought me into my current situation, I’d like to tell you upfront and now- that I am a cheerful, positive and silly person! Despite day to day pain levels, my goal is to keep my smile, let my children know how much they are loved and still raise them to be the best individuals they can be.

With that said, let’s get down to the nitty gritty:

When I was 12, they found out I had double curvature Scoliosis. At that time, both curves were at 30 degrees. Basically, my spine looked like a backwards S. Now, a lot of people get Scoliosis, more so women than men. But unfortunately, my case ended up being so severe by the time I was 16 - the curves were up at 60 degrees, and pulling my hips one way, and my ribs the other. Therefore putting too much pressure on my heart and everything else in between. They decided to do surgery, they had said if they didn’t, by the time I was 25, I would have been squished to death. So, they placed two Herrington rods in my back, with little hooks that hooked into my Vertebrae. I recovered from that , and ended up with a list of things that I could never do, motorcycle riding, carnival rides, etc etc. fast forward to 1999, and I got a severe blood infection. Fortunately for me, that infection went to those rods in my back, instead of my heart, kidneys or wherever else. So, back to the hospital with me. I had gotten this huge abscess on my scar, I had no clue what it was, but then it opened up, and you literally see my spine and the hardware in my back. The doctors I had saw had no clue what it was, so they sent me to a big shot hospital in Washington D.C. who checked me in on the spot, and that’s when we found out how sick I really was! I knew I felt horrible, but I didn’t realize I was close to death. They checked me in, put me on serious IV antibiotics and did surgery the next day. They took the rods out , cleaned out my back, and kept me for awhile.

Now, after recovering from that, some more time passed, and the pain I was going through back wise was just getting beyond control, and then labeled as chronic pain. They then found out that the lower curve had stayed fused and was sitting at 47 degrees. But, the upper curve was quickly curving again, and obviously not fused with the bone they had placed during the first surgery. They found massive built up scar tissue, nerve damage and advanced arthritis.

That was about 5 years ago,well, all in the process we’ve been on a search for a doctor that will take my case. During that time I heard the same line over and over - Your case is too severe and complicated, I cannot or do not have the means to help you. And then referring me to someone else. All the while, trying to manage my pain, they’ve had me on many different meds trying to keep me at a somewhat balanced pain level. The latest has been my new doctor, who has hopes that a doctor at the University can help me, he’s been known to take these kind of extreme cases. So, that is where I am now. They had me on Morphine ER (extended release) and Zanaflex (muscle relaxers) for awhile as we awaited seeing a very impressive doctor at the University Hospital in Denver, CO.

The morphine ER did help some with the pain levels, but my family started hiding under the beds because of the mood swings that came along with it! So they tried Oxycontin and Valium, the Valium helped with a lot of the muscle issues I have, but from the past of a long history of them putting me on Percocet, I seemed to have developed a sensitivity and light allergy from it. I was so itchy,I was bruising myself from the insane scratching, and the toilet and I became to close of friends during that amount of time! Now, they have me on Diluadid and we stuck with the valium, and I’m about as comfortable as I can be.

Where I am now that I’ve seen above mentioned doctor:

Ok, and now updates from that point. As of now, the lower curve is not still fused at all.. the curves as of right now are at 67 degrees top, and 63 degrees lower. So, while the curve is not as high on the top as we once were worried about, we’ve found a lot of other things out. First and most dangerous, the bottom is curving again as well. And they are curving at a very fast rate again, being that in 1999, they were both around 47 degrees.

The new meds as mentioned above are helping as much as they can for what my body is going through. Which, at the most recent appointment, we found out just what that is.

Aside from the problems already found with past surgeries, the curving etc. We learned from the myleogram that I have several fractures in my back, several on top, and several on bottom. And in the middle, the bone is not even fused at all. So, I’ve been managing, for gods knows how long to make it around with a broken back.

The bedrest orders from my family doctor, went to strict rest orders from my surgeon. And we now have surgery dates. Which, is Jan 13th. They wanted to do it this month, but my husband did not want me to go through this during the Holidays. The surgery will be removing all my bone in there, placing mini rods up my entire spine, and replacing the bone with synthetic bone. It’s a 2 day surgery, and a high risk surgery. After I come home, I’ll be sent home with something called a ‘pic line’ (spelling?) basically an IV that goes into a bigger artery, and stays in. Because of my past with the blood/staff infection, that is one of the bigger concerns risk wise right now. I’ll be sent home with mega anti biotics along with pain management stuff.

Ok, so, the first 6 months after surgery is recovery - the first 3, I cannot do anything at all. The next 3, I can start to sit for brief moments, and very limited things. The next 6 months will be physical therapy. I’m going to have to relearn to walk and etc. I’m facing a very hard year. But, if all goes well, and we don’t run into problems/risks, she says after the year , I will feel great. So here is hope to seeing a small light at the end of a very long tunnel.

So, for now, this is where I am at. Bed rest. I’ve had more series of MRI’s done and ENT consult (that was terrible, by the way! I’ll have to go over that one in a blog post for sure!) Pre-op is on Dec 22nd and the big day (surgery) begins on Jan 13th.

I’m amazed at myself, I knew I was in pain, but - amazed that I’ve done all that I have done, with a broken back. I’m scared, no.. terrified. I feel like I’m reliving an old nightmare. But now I’m older, and understand the risks involved a lot more clearly. So many risks are involved in this surgery, being paralyzed, death, etc. etc. The option also that she may have to go back in 4 days later to realign if things don’t align all the way right the first time. It’s so much to digest.

So, that brings me here, to this new blog.. to share the challenges I am facing and am about to hit head on and stubbornly, and all the while, continue to raise my 4 beautiful children to be the best, caring and wonderful individuals that they can be. Feel free to ask me any questions at any time, I welcome comments and I welcome you along my adventure… and if you made it through the history of my crazy spine and health, then welcome aboard!