Wednesday, November 9, 2011

Home Sweet Home

We have made it up to Paso Robles and being home seems to be the best medicine for Mom. She is no longer taking the heavy pain medication that they sent her home with and she seems to be even happier now that she is back in Paso. She still has ups and downs throughout the day, which is more than expected at this point in the recovery process, but overall she is doing far better than anyone ever expected just four weeks post surgery.  She is even feeling well enough to write a guest post, so here is a message from the patient herself:

My dear Friends,
I asked Julie if she would mind if I did a blog update.  I do not write nearly as well as she does, but thought I’d give it a try.
My mother has said that I need to close this blog and tell everyone who has been following it that I lived ;). Well, I decided to tell you a bit about what I have been up to over these last couple of weeks since Julie did the last update.
First and foremost, thank you from the bottom of my heart for all your kind words and thoughts. After about a week in the hospital, once I was a bit more lucid, I would wake up in the middle of the night to read what Julie had written and your comments. It really helped to know that I have such caring and thoughtful friends.
When I finally accepted the fact that I was going to have to have this surgery last January, I had no idea what to expect. I was in severe pain 24/7 and could feel myself literally collapsing. My right ribs touched my right hip bone in certain positions, my stomach was being squished and I could feel bone on bone within my spine when I moved. I had shrunk over 3 ¼ “ (a total of 4” by the time I had the surgery).  We were in the middle of building our dream home so I decided I could not have the surgery then. Once the house was done I had to have my family visit for the month of July. Then, of course, I could not possibly put off our annual motorcycle ride in August (beautiful Wyoming this year). Next I just had to make one more visit to NC to see my darling grandsons – who knew when I would be able to visit again? Finally, The Three Speckled Hens, who are dear friends, had scheduled their Fall Antique Show for Oct 1 & 2. Since I am a Speckled Hen Wannabe, I just HAD to be there.  Obviously, life seemed to get in the way, as it always does, and I finally had to surrender to having the inevitable surgery in early October.  That only took ten months – longer than a pregnancy ;).
As time grew near for the surgery I became more anxious about the unknown. I have been told to expect a recovery time of six months to a year (bones need time to fuse) which was another reason to have the surgery at this time of year. Not much happens over the late fall and winter here so it is a perfect time for me.
My big surgery was four weeks ago and I am doing so much better than anyone every expected. I can walk on my own (without a walker!), I can put my brace on my by myself, I can get in and out of bed and I can even shower on my own. I stand 2 ¼ “  taller than I did a month ago which gives the illusion of great weight loss (love that part ;)).  The shape of my body is very unfamiliar to me – I have a lumbar curve where I have never had one before, my hips used to curve out (think saddle bags) which they no longer do and my torso has been elongated.
 I have been off narcotic pain meds since week two, which seems to shock most everybody. Most people are on them for three months, but I just can’t seem to stand the awful side effects. Additionally, I don’t feel that my back is in severe enough pain to require them. The strongest non-narcotic I can take at this time is Tylenol. Naproxen (Aleve) and Ibuprofen (Advil) are not allowed because of the potential to bleed. 
Since I am doing so well relatively speaking, I am having a very hard time taking things slowly and I really want to be able to go back to my life as it was. Pilates 5x a week (which I am 100% convinced is the reason I am doing so well), taking care of my goats and chickens, and getting my garden ready for winter among other things. Julie has to constantly remind me how well I’m doing in such a short amount of time – I just seem to have trouble keeping everything in perspective sometimes.
The incision on my back is very tender (as you can imagine) and I am starting to have severe nerve pain in weird areas of my body. For example, there are times it feels like I have a hot needle going into my right thigh or the end of my toe.  Julie and I feel like my nerves are starting to come back to life after the trauma of the surgery, but who really knows why this is happening – it’s just part of the healing process I suppose. 
While my back pain is pretty well controlled, I find that I am weak and get dizzy easily. I have to be careful how quickly I get up. Getting in and out of the car or the bed or off the sofa is a challenge to say the least. I am only allowed to sit for about 10 minutes at a time otherwise I have to be lying down, reclining or walking around.  These restrictions make me a bit stir crazy from time to time, so I’m working to establish a routine that will allow for a good balance between rest and activity. 
Another challenge I am dealing with is turning over in bed.  In order to do so in the middle of the night, I have to wake up and carefully “log roll” (keep my shoulders and hips on the same plane) to another position. I am slowly getting used to doing this and I hope it will become second nature soon! Additionally, there are times it seems like I can actually feel some of the screws in my back. I have been told that it is common to be in more pain seven weeks post-surgery than I am at three weeks post-surgery. I sure hope not!
My biggest complaints these days are my stomach and my left foot. I have had stomach complaints since day one. I feel as if there is a brick of fire in my stomach at times. If it does not improve within the next two weeks I may have to have an endoscopy to rule out an ulcer. My left foot has had 4 surgeries for various things and now it gets so very swollen within 5 minutes of me being up on my feet. It is quite painful and feels as if I have a large rock under the ball of my foot that I am walking on.  Unfortunately, at this time I am unable to take anything for the pain. This presents an issue as I am supposed to be walking around as much as I can so my back can heal faster. I guess I’ll just have to address one issue at a time.
All in all, I can tell that this surgery is going to be worth it. I am in far less pain than I was pre-surgery and once this year is over I have a feeling I will be even happier that I had it done!
Thank you again for all of your love and support through this journey!

Thursday, October 20, 2011

UPDATES - Monday - Thursday

Sorry I have been a little MIA lately.  Things got a little busy once Mom was moved to the rehab unit and I started commuting back and forth to the hospital from Pasadena. I was keeping blog entries along the way, but had to do some revising before posting. Please see the posts below for updates on how Mom has been progessing throughout the week. Thanks for checking to see how Mom is doing!!

Fast Progress

I am always surprised at how well Mom looks and how well she is functioning every time I walk into her room in the morning.  The progress is happening so quickly that even I forget her surgery was just one short week ago. 

Mom's therapists and doctors met today to discuss her progress to this point.  They are all so impressed with how well she is doing that they have decided an appropriate discharge date is Saturday October 22nd.  This is very exciting news because Mom is starting to get some cabin fever just sitting in her tiny hospital room all day.  She is anxious to move on with her road to recovery.  She won't have therapy on the date of discharge, which means tomorrow is her last day of therapy. I am amazed at what just three days of therapy has done for her and I am so thankful she had the opportunity to learn all that she has in this short amount of time.  I know everything we have learned during the therapy sessions (I've attended most of the sessions with Mom) will help me to help her recover at home, so I am thankful to have had this opportunity as well.

Today occupational therapy consisted of learning her way around the kitchen. Mom was presented with the task of making tea for herself. She had to get around the therapy kitchen with her walker while getting all the supplies she needed (tea, mug and tea kettle) to make her tea.  It was very interesting to note how many things had to be modified just to make a cup of tea.  It is expected that Mom won't be required to use a walker around the house once she is discharged, but it is good to practice with in case she wants to use it for balance or so she feels more secure.  She seems to have a habit of reaching across her body to pick things up, which is something she needs to focus on changing because that simple action leads to the twisting of her torso. Mom also had to attend a disaster preparedness class so she could learn about the modifications needed for her in a disaster situation. This class was informative but somewhat redundent since Mom use to teach a disaster preparedness class for the Red Cross.

After her OT, Mom and I got to enjoy lunch at the Plaza Cafe because the Doctors gave her "Plaza priveleges", which means a family member can take her down to the Plaza level as long as she remains in a wheel chair. This was the first time Mom got to have a meal outside of her room since she entered the hospital on Monday October 10th.  Her stomach still isn't feeling great at all, so she didn't eat much, but it was nice for her to get out of her room and experience other parts of the hospital.

Mom got to enjoy a nice nap after lunch before having some more PT.  We went outside on the Plaza level for PT so that she could practice walking in more crowded areas and learn tips on what she should be looking for when going out in public in terms of places she can rest.  There are small things like looking for a bench with armrests to assist her with sitting or thinking about how to repurpose an outdoor object to better suit her needs.  Something else you might not immediately think about having to modify is opening a door.  First, the door may be too heavy for her at this point (the one at the hospital is definitely too heavy) and the simple act of opening the door usually causes you to twist your torso. Again, all things we take for granted in our every day lives.

Another notable accomplishment for today is that Mom was able to put her brace on all by herself. She has learned how to reach around back and thread the straps and pull them taught.  She learned how to do this all on her own, which is very impressive because even the person who delivered the brace says most patients have trouble doing this even when he teaches them how to do it. He joked that she should be the one teaching them how to do it. This is another example where Mom is absolutely exceeding expectations.

I feel that today was a great day of progress and I have the sweet taste of lemonade lingering on my lips.  Mom is an inspiration to me each day and I can't wait to witness her continued improvement in a more familiar environment - home sweet home :).

Wednesday, October 19, 2011

Lots of Therapy

Mom experienced an extensive amount of therapy today, but she learned an enormous amount and is already on the fast path to recovery.

She started the day with occupational therapy (OT). The occupational therapist (Katie) is in charge of teaching Mom about how to make modifications so she can return to doing all of her every day activities independently. These activities includes things like showering, putting clothes on, getting around the kitchen and things of that sort. Today Mom got to take her first shower since she's been in the hospital (she was previously getting sponge baths). She had to learn how to get in and out of a bathtub shower since that is what Dad has in his apartment in Pasadena. After learning about the various precautions she will need to take when showering, it was time for her to get dressed. As you can imagine, this can be difficult to do when you can't bend or twist. Mom will have a "reacher" (grabbing type device) and a "sock assister" to help her with getting dressed. After hearing about all the modifications she has to make just to get dressed, I have a new perspective on all of the "simple" tasks we all seem to take for granted.  Mom was very frustrated and emotional after her OT session because she felt defeated, exhausted and nauseous.  I think she was expecting to receive a little more help than she did, but Katie said she was doing so well that she didn't need to help Mom.  This is a situation in which Mom's expectations aren't in line with those of the medical professionals and she thinks she is doing much worse than she actually is. That being said, I can understand how it can be frustrating to have to adapt to a whole new way of living..

Next was physical therapy (PT) with Adrienne. Adrienne is really great with Mom and helped her to calm down with some breathing exercises.  After Mom was feeling a little better, she learned some various core exercises that she can do in bed without compromising her back at all. Adrienne also taught me how to stretch Mom's calves and hamstrings, which will help in her recovery process.  A lot of the exercises work many of the muscles Mom was previously using in Pilate's, but are modified so that the back is not used at all.  Because of Mom's Pilate's background, she is doing exceptionally well at all the exercises that are thrown her way.

After a break for lunch, Mom had another session of OT.  They have a room in the hospital with various areas that mimic what you would have in your house.  Mom learned about all of the modifications she has to make at her desk so that she can comfortably work in her office and on her computer while still respecting all of her spinal precautions.  I even learned a thing or two that will help me when setting up my workstation!  It is amazing the amount of knowledge all of these therapists have and the simple, yet not so obvious, modifications we can all make to be more comfortable in our everyday lives. 

Physical therapy was the last activity for the day.  Adrienne and I took Mom to the gym in a wheel chair because she was feeling a little fatigued, which is quite understandable.  She did 5 minutes on a bike machine that is low impact for her foot and back.  Next were varioius balancing exercises including walking on an unstable surface and doing squats on an upside down Bosu ball.  These exercises can be challenging for the average person, much less someone who has just undergone extensive back reconstruction and Mom did them remarkably well.  Her body is still getting used to doing activity, so this series of exercises was actually more tiring than she expected.  This made her feel discouraged, but again, I reminded her of her amazing progress considering she isn't even a week out of surgery.  She is having trouble keeping everything is perspective and realizing her astounding accomplishments along the way.

By the end of the day, I realized that overall we need to continue working on managing Mom's expecations of herself in comparison to the expectations that the Doctors and others have of her at this point in her recovery process.  I have learned that she will continue to struggle with recognizing and admiring her accomplishments and it will be my job to help her put things in perspective so that she can continue to progress at such a rapid rate.  I feel confident that tomorrow will be an even better day because I notice so much progress each time I come to visit her for the day.

Tuesday, October 18, 2011

Just the Beginning

Today was the first day of therapy for Mom.  The therapy that Mom will receive is designed to show her how to live every day life and how to strengthen key muscles while following spinal precautions.  The spinal precautions are no bending, no lifting and no twisting - easily remembered by BLT.  Mom mainly had baseline evaluations for both occupational therapy (OT) and physical therapy (PT) today.  She learned a few stretches and exercises during her physical therapy session that she can do on her own to start "waking up" the muscles again.

Mom got her new custom brace today and it is actually pretty comfortable considering it is basically a plastic mold of her torso.  I will try to put a picture up when I get a chance, but it basically looks like a strapless corset with a hole in the front middle part of it. There is a lambs wool type of insert that goes in the chest area of the brace to make it more comfortable. This insert can be replaced by a neoprene insert so that she can wear the brace in the shower.  This brace makes Mom feel a lot more secure and she has less pain with it. She has even taken to wearing it in bed because of the extra support it provides. She isn't required to wear a brace when laying down, but that is her preference for now.

Gramme and Grandaddy (Mom's parents for those of you that don't know) came to visit her in the hospital.  It was a nice visit because Mom was doing particularly well at the time they came to visit.  I think they were surprised to see how well she was doing and what good spirits she is in. It is absolutely remarkable that she is in the condition she is considering it hasn't even been a week since her major surgery.  I had the pleasure of going to dinner with Gramme and Grandaddy after their visit. It was great to be able to catch up and socialize a bit.

I am so glad Mom got into this program because it has been so informative already and she has only received the baseline evaluations so far. I look forward to the knowledge that tomorrow's therapy sessions will bring.

Monday, October 17, 2011

Moving Forward

Today was a day of change in a positive direction.  While Mom still had ups and downs throughout the day, overall she is headed in the right direction, which is something to be very happy about.Mom had a pretty rough night last night because she had a bad reaction to her pain medication at about 3am.  She had severe nausea, was shaking, got really hot and then cold and started sweating. This was likely because she is still on a clear liquid diet and didn't have anything to eat prior to taking the pain pills. The Dr. has since switched her to a soft food diet and she was able to eat with her most recent dose of pain medication, which seemed to help.

Mom was casted for her new brace this morning and she had to stand for 20 minutes which made her completely exhausted!!  She should get her custom brace tomorrow and will start using that full time.
I am happy to report that Mom was approved for the inpatient rehab program.  She will be moved to the rehab floor and will be there for 7-10 days depending on her progress. The rehab doctor (Dr. Rao) came to let us know that she got into the program and Mom talked with him about her frustration that she feels like everything is taking a long time in terms of progress and she feels like she takes one step forward and then five steps back.  Dr. Rao helped to put things in perspective for her and talked to her about managing expectations.  She is expecting much more out of herself than the doctors are expecting.  He said everything she is doing now is in line with what they expect at this point, so she has to cut herself some slack and have some patience.  She also needs to recognize the achievements she has made in such a short amount of time relatively speaking - her surgery was just last Thursday and today is only Monday.  Dr. Rao's "pep talk" helped Mom wrap her head around the fact that she should give her self more than 4 days post surgery to be able to get herself out of bed, bathe herself and do simple tasks that we all seem to take for granted.
The other area of frustration and discomfort continues to be Mom's stomach.  She finally gave in and allowed the doctors to give her stronger stomach medicine (for those of you that don't know, one of Mom's biggest phobias/fears is throwing up, so she was very resistant to taking heavy stomach medicine.)  The stronger meds helped to get things moving and she is feeling better!! She is also have to eat some regular food now, but she will remain on a soft food diet for the time being.

A bed in the rehab unit was available around 3pm.  Mom was transferred via wheel chair to her new room, which was MUCH smaller and more claustrophobic...this did not make Mom a happy camper at first. I've learned that Mom doesn't like change very much because she doesn't know what to expect.  Luckily I was able to help her focus on the positive part of what this portion of the journey will bring and she settled down and started accepting what was to come. 

Once she got to the rehab unit, we met her nurses and the explained a lot about what goes on in this unit.  Mom will have occupational and physical therapy up to 3 or 4 hours a day throughout the day with breaks in between.  The therapy usually takes place between 7am and 4pm and her schedule will vary each day.  The therapy sessions act as stepping stones to get her ready to go home. I think this program will be great for Mom and will also help me to learn about everything she will need once she gets home. 

When moving from the surgical care unit to the rehab unit they have to discharge her from one unit and admit her in the next unit. Because of this, she had to go through the admitting process all over again. I mention this because they had to take her weight for the first time since she was admitted to the hospital a week ago. She stepped on the scale and it said she weighed 15 pounds more than when she was admitted last Monday (Mom said it was OK for me to blog about this in case you were wondering ;)).  She quickly told the nurse that it couldn't possibly be the right weight because she was 15 pounds heavier than a week ago.  She stepped on again and got the same result.  The nurse took the scale from the room, weighed herself and came back to report that the scale is in fact accurate.  Mom was in disbelief and I was racking my brain to come up with reasons why she would weight that much more. I wanted to make her feel better because I could see she was clearly discouraged.  She couldn't believe she weighed that much more after being on a liquid diet for a week.  I personally think there is a lot of water weight involved because her feet are swollen and she's just a bit "puffier" in general.  I also thought that the hardware has to weigh a good amount, but when I looked up about how much it weighs on average, several websites said it probably weighs about 2-3 extra pounds. 
Regardless of her weight, Mom looks much slimmer because her torso is no longer scrunched up.  She is definitely taller after the surgery, which she is very excited about. We noticed that she "grew" when I was standing next to her in the mirror. I think she is taller than I am again, but we still haven't had a chance to take exact measurements.  Every time I am walking behind her, I can't believe that she is the same person that I had just seen scrunched together a week ago. She just looks so much straighter and taller!!  It was hard to know what to expect, but the results look much better than I could have ever imagined...I just never thought she could go back to looking how she did prior to shrinking so much.

Mom didn't have any therapy today because she got to the unit too late in the day. She will begin her therapy tomorrow and she is a little anxious about it, but she's looking forward to the knowledge she will gain.

Sunday, October 16, 2011

A Better Day

I am happy to report that today was a better day overall.  There is still a lot going on with Mom in terms of progressing and healing, but the Dr. said that her labs look good so it is time to start getting her off of IV medications and transitioning her to pill form.  While the IV medications are convenient, the Dr. said the risks and side effects are worse than the benefits of it at this point.  Because the liquid form of the medication is more potent and goes directly into her veins, it has more of an immediate effect, but it also has more of an immediate drop-off in effect once it wears off.  In contrast, the pain pills will provide her with more of a steady dose throughout the dosing period, which will allow for her comfort level to remain more consistent throughout the day.  She should also experience less ups and downs in terms of pain level and emotional reactions to the pain.

Today is the day that I've felt most helpless so far because her main ailment is still her stomach and there is nothing I can do to help her at this point.  Dr. Kim said that she has the "perfect storm" going on with her belly right now because she has Sjogrens, her stomach was actually stretched during the surgery because there is now more room for it again, the narcotics are doing a number on it, she has acid reflux and nothing is really moving around in there.  This obviously creates a lot of discomfort (her stomach is very distended) and unfortunately it is just a matter of time before she will feel better. The nurses and doctors are doing everything they can at this point to try to relieve the pain and get things moving again, but her body seems to be taking it's own sweet time to adjust to and recover from all it has been through in the past week.  Unfortunately, I think this may be something that has to resolve itself :(.

Mom got completely "unhooked" from all of the remaining lines she was connected to.  They removed her IV fluids and medicine in addition to the drain in her back.  The drain was collecting more fluid than blood, which was a good thing, so Dr. Pashman removed it (it was sutured in) and redressed her wound.  He also ripped off about half of the Steri-strips from her incision - Mom didn't like this at all (I can't blame her) and she still had some residual burning later in the day from where he removed the Steri-strips.

The best part of the day (in terms of progress) was that Mom was able to get up out of bed to brush her teeth, walk around and sit in a chair.  She got up a total of three times to walk, which is absolutely fantastic.  She was particularly motivated and determined on her third walk of the day. I kept asking her what her goal was and she kept picking longer goals along the way. First it was to the first exit sign, then it was around to the other side (the floor is set up in somewhat of a circle with nursing stations in the middle), then it was one exit sign after another until we finally completed a whole loop around the floor. To say I was impressed is an understatement! Mom continues to surprise me with her strength and determination.  I knew she would be able to do it, but I didn't expect to see her this strong this soon after her surgery.  While this is really great progress, she is trying to get into the rehab program at the hospital that will provide three hours of inpatient physical therapy every day for seven to ten days.  This physical therapy should expedite the healing process and will literally get her up and going much sooner.  Obviously, this program would be a great benefit to her, but she has to qualify and the pain management doctor said that if she is doing too well, then she won't qualify for the program through the insurance company.  She basically suggested that Mom should do the bare minimum so that the physical therapists reports don't show her doing too well for the program, so that is our plan from now on.

It was also a better day because Mom got to Skype with Wes, Jenn, Zack, Carson & Levi (their new dog) and Blake and Nicole came to visit.  It was nice to have visitors from near and far.  Mom's mood was quite upbeat and I loved to see her beautiful smile return to her face.  I was lucky enough to have the evening off (thanks for covering Dad :)), so I went to see Moneyball with Blake and Nicole and then we had a nice dinner out.  This was a nice break for me, but my thoughts were still with Mom and I checked in with Dad as soon as the movie was over.  Mom was doing well in the evening, so I had Blake drop me back off at my hotel where I have just finished packing up (my time at the hotel has come to an end - next I will be commuting from Pasadena) and will hopefully get a good night sleep.

Please continue to keep Mom in your thoughts and prayers as each day still seems to have plenty of ups and downs.