Saturday, August 9, 2010

Goodness, gracious . . . a lot of time has passed since February 26! I have mentally updated my blog so many times but I have not had the gumption or courage to get on and write--mostly because things have slowly gone downhill since my last entry. Sometimes it seems like ignoring the situation might make things get better but that has not been the case. Let me get you back up to speed . . .

When I first got my news that the fusion seemed to be progressing well, it was such an answer to prayer. There was a real sense of relief that we might be seeing the light at the end of the tunnel.

The staff surprised me with a funny luncheon prepared by our genuine, “bone”-ified school skeleton, people (especially my students) were thrilled to see me bearing weight with my

walker, and we found (what was hopefully going to be) a final parking space for my scooter in a dark part of the garage. Amazingly--as I slowly started putting weight on my foot--it felt solid and good.

Around Spring Break, Dr. Carbonell let me know that it was time for me to start going to physical therapy. All of a sudden, I was buying canes in different colors and shopping around for rocker bottom shoes. At $250 a piece, my lovely rocker shoes weren’t cheap—but they were sure better than my big boot! My physical therapist, Doug, was amazed at how well I could walk right off the bat. He worked with me to adjust going up and down stairs, build strength in my legs, and loosen up some very stiff toes. After just three weeks, he discharged me saying that I just needed to keep using the cane and wearing a compression sock for at least a year while my body got used to forever functioning with a "block" foot (a foot with an ankle that can not bend at all).

The thing is--although all of this was very encouraging--I was quietly beginning to panic. I was in so much pain. Although I wanted to prove to myself that I was getting better, every step was telling me that something had to be very wrong--or if not “wrong”—at least not what I was hoping for as an “end” result. If this was what the rest of my life was going to be like, I honestly hoped that I wouldn’t live too long.

The thing is, when walking is that painful, you don’t want to go ANYWHERE. You just want to sit in your chair and figure out how to take the least amount of steps to accomplish what you absolutely have to do.

Pain is a crazy thing. It is all your brain thinks about. You get irritable. Short with people.

Demanding. Your mind keeps thinking about that pain pill or glass of wine that can give you a little break from the misery.

My x-rays eventually showed that the screws were moving a bit and were boring holes in my tibia. Dr. Carbonell put me back in my boot, and then got me fitted for a brace that would give me some support—all in hope that somehow this was going to work out.

By the end of May, I was convinced that something had to be very wrong. We looked

at my x-rays and saw something new . . . the cadaver bone in my ankle had collapsed. My tibia was out of place and the screws were causing part of the tibia to shear away from the shaft. I was relieved to see that my pain was being caused by an actual problem. I thought I was maybe just being a baby about normal fusion-recovery pain.

Anyway—Dr. Carbonell put me in a cast and said that I would stay non-weight bearing for at least three months while we waited to see if the bone would solidify again.

At this point, it seemed clear that I really needed to see some orthopedic surgeons to discuss the next step. I spent the beginning of June navigating the big world of orthopedic surgeons.

The main doctor I really wanted to see didn’t take my insurance, but his appointment guy, Enzo, took pity on me and started pointing me in the right direction. “No—he sounds like he would be good but he really only does knees. No—don’t go to him—he only does ankle trauma—you will just see him and he will send you to someone else. Yea—he is really good. He does all of the really difficult ankle surgeries.” I wouldn’t even bother trying to get into an office unless the doctor had been “Enzo-approved.”

After living in the kind and friendly fishbowl of Dr. Carbonell’s office for 18 months, it was weird starting fresh with other doctors. You practically had to send flowers and chocolates just to get them to consider giving you an appointment! In the end, I had three appointments for the end of July.

So—knowing we had about a month to wait before we could do anything—we decided to get busy! We went on a family vacation to Curacao, and later travelled to Michigan for two family reunions.

During this waiting time, I really needed a chance to sort out some things in my head. Was God disappointed with how I was handling this situation? Was I not praying enough? Did I not have enough faith? Was I trying too hard to be in control?

When I first got hurt, so many people would come to me and say, “Oh my goodness, Anne! What a terrible thing that has happened to you!”

And I would say, “Oh—it is OK! I will be all right. God has a plan . . .”—and I meant it with my whole heart! Everything really was going to work out. I believe that still.

But about a year after my fall, when I was using my cane but suffering from so much pain, people would see me and say, “Oh, wow! You are doing so much better! Our prayers have been answered! I just knew you were going to be OK!”

These comments put me into panic. No—I was not OK. This was not good. I may LOOK like I am doing better, but this is horrendous.

For some reason, I just couldn’t lie and say, “Oh, I know—aren’t I doing great!!” I would say something depressing like, “Oh, but I really am not doing that well. I am in a lot of pain.”

The minute it came out of my mouth, I felt like I could read their mind . . . “Well, no wonder she isn’t doing better—she isn’t focusing on the positive.”

In Curacao, I tried to think of a better response. This is what I came up with: “We are still struggling with the healing of my ankle, but I know that—somehow—I will walk again someday.”

Nice. Honest. To the point. Hope for the future.

But Doug—never wanting me to give up hope—would say, “Why do you have to say, ‘somehow?’ That makes it sound like you are planning on an amputation or something.”

OK—fine—I will take out the “somehow.”

Next time I tried it out, Doug says—“What do you mean you will walk?!? You are going to dance, Baby--DANCE!”

“Good grief, I don’t know if I am going to dance! Right now I am just shooting for being able to walk!!! Let’s be realistic!”

I always felt like I was being corrected for being realistic. This was not going to be easy. It was obvious that when they told me this was a “catastrophic” injury—they weren’t saying it to be dramatic. Yes, I am strong. Yes, I am always going to try to have a great attitude. Yes, I fully believe to my core that God has an amazing plan for me. However, I also realize that my life will not be the same again. We can sugar-coat this all we want, but my foot will never be like it was.

But was that the wrong approach? You always hear of people who experience medical miracles. Was I shortchanging myself by being realistic? I have always loved the verse saying that God can doimmeasurably more that you could ask or imagine. Was I not allowing myself to imagine myself dancing with a perfectly functioning ankle? If I did—would things start to work out differently?

When Doug’s Dad was sick in the hospital, Dad said, “My prayer is that I can be at peace with whatever God would have happen in my life.” That struck me so much—I have never forgotten it. That is how I feel. I am truly at peace with whatever happens to me.

But—apart from having a good attitude and doing all I can to get better--do I have some sort of power to determine the outcome of my healing? Am I expecting too little to simply be content and at peace with whatever happens? Is God waiting for me to have the faith to plead for a miracle?

Honestly, writing this right now, I still don’t know. And for that reason, I always have a little shadow of guilt hanging over me as I go on this journey.

Anyway—I realized how easy it is to trap people in the dreams and hopes you have for their lives with our friend, Elaine. She is a lovely woman at our church who always leaves the most encouraging messages on our phone letting us know that we are in her prayers. She fell a while back and was in a health-care facility for months. During this time, she was in a large neck brace, confined to bed, and unable to walk.

Well, I come in to church the other day and there is Elaine, using a walker to move across the church and holding her head up on her own power. I was so shocked and thrilled to see her I exclaimed, “Elaine! Oh my goodness, you look amazing! I can’t believe how great you look! You must be so happy!”

As soon as I said it, I could read in her eyes that she was not feeling what I was saying. In fact, she looked terrified. All of a sudden I realized that I was projecting my feelings on her. I quieted my voice and came to her and said, “Elaine, I am so happy to see you. How are you doing? Has this transition been hard?” She opened up so quickly and began telling me how scary it has been to come home. That she feels like a burden to her daughter who is now caring for her, and feels uneasy away from the hospital. She talked about the pain that she is now managing on her own without nursing care.

I couldn’t believe that I had almost missed an opportunity to encourage Elaine. She needed me to ask her how she was feeling—not TELL her how she was feeling. Even though my initial intentions were good, they were not what she needed at that time. I am grateful I know that now.

OK—enough mental rock-tumbling—back to basic info . . .

About two weeks ago, I got ready for my big appointments by having a CT scan done in advance, collecting all of my current X-rays, making multiple copies of my surgical reports, and creating a nasty photo album featuring our favorite shots of my infected, mangled ankle. (I can send you a copy for your coffee table if you like.)

Within three days, Doug and I had sat with multiple doctors and were given the same news over and over (thank goodness, really). We left the experience feeling like we had been hit in gut, BUT also extremely grateful for the expertise of the doctors that we were meeting with. We feel like we are in very good hands—no matter what our final decision might be.

Here is what they said . . .

1) The fusion surgery that I had in November failed. The talus was unable to produce bony tissue to create a bond with the tibia and the calcaneus. My talus was also unable to grow in and through the cadaver bone. That is why it collapsed and why my ankle is a big piece of mush right now.

2) The talus portion of my ankle is most likely still infected as is rapidly dying. It is getting only about a 5% blood supply, so it will never be able to heal or generate new bone. It needs to be completely removed soon. This will obviously render my ankle completely useless.

3) My options are simple . . .

a) Have a below the knee amputation.

b) Have a rare surgery called a tibiocalcaneal fusion and tibial lengthening with external fixation.

Both of these options clearly have some drawbacks. However, I am ready to take on the difficulties either of these options will throw my way and know that I will be better for it. It is all do-able!! Go! Fight! Win!

Here is the problem . . . which one do I choose?!?!?

I’ll tell you what I have found out:

Amputees are amazing. I have spoken to more people who have a laundry list a mile long of the things they have done with their prosthetic leg. Most struggle with phantom pain and manage it with various drugs such as neurontin, lyrica, and/or oxycodone. It is very important to take good care of your amputated limb (I found out quickly that people don’t like to call it a “stump”—my bad). Most have given up using the leg cover things and just like to walk around showing the inner mechanical workings of the prosthetic. Some always wear long pants to keep it discreet, others are proud to show their leg. Prosethics are very expensive and usually involve a certain amount of finagling with insurance companies. Most talk about the annoyance of having to use crutches to go to the bathroom in the middle of the night, or needing to take their leg off to go in the pool. But other than that, most say that having an amputated limb has not held them back one bit.

To date, I have not been able to talk to anyone who has had the tibiocalcaneal fusion (we will call it the TC fusion from now on, OK?). Dr. Hutson, at the University of Miami is the expert on this surgery and would perform mine if I chose to have it. He said that they would first go in and take every shred of my talus out of my foot, stuff it full of antibiotic beads, and put me on IV antibiotics for a week or two to make sure that any infection has been killed. Later, I would go back in and they would attach my tibia to the calcaneus. This would all be held in place with a large external fixator which would press the two bones together so that they would hopefully fuse within about 4-6 months.

Now—removing the talus would create about a two inch discrepancy between the length of my two legs. Therefore, they would use the fixator to slowly stretch my tibia. Over about 9-12 months, I would turn a small crank on the fixator every 6 hours. The pins going through my bones would pull on the bone and slowly persuade it to grow longer. In time, my tibia would eventually grow the two extra inches of bone that I would need to be even on both sides of my body. They say that there are lots of complications to plan on (intense pain, infection of pin sites, weakening of the tibia, non-union of the calcaneus and the tibia)—but that most eventually end up with a good result within one or two years.

All of the doctors say that the TC fusion would leave me with a “salvaged” foot (such a positive term). My foot would never flex or bend. I would definitely need to wear rocker bottom shoes (no biggie) and would probably need an ankle brace for support. I would never be able to jump, run, or walk quickly because of the strain it would put on my metatarsals and knee. In fact, these parts of my body would most likely become arthritic within about 5 years of the surgery. However, with this option—I would STILL have my own foot.

There they are—my two options.

Since getting this news, my heart has felt like a clenched fist.

My first concern was that I was going to mess up yet another school year by being out on disability two months. However—once again—the school has been incredibly supportive. Such a blessing.

The girls went on a four-day road trip with my parents right after we had these appointments. This was wonderful because it gave Doug and I time to process, brainstorm, research, grieve, plan, and pray. One minute we would be leaning towards one option, and then suddenly the other option would seem more favorable.

If someone just told me I had to do one or the other, I would be ready to go with gusto. But having to decide between one or the other has been tough.

I grieve that Doug and the girls will have to endure more upheaval. I think the worst is that the girls have to keep hearing about it all the time. That is one reason I am writing this massive novel right now because I just can’t keep walking around explaining the whole ordeal to people again and again. It is too hard for the girls to hear—and frankly—kind of hard for me to relive again and again. I need a little mental space from it now and then just to feel like I am not drowning.

We were pulling in the driveway the other day and Elise suddenly said, “Mom—I think you just need to chop your leg off. We have been dealing with this for a year and a half and we are sick of it!” She slammed the car door and marched in the house. But this morning she said to me, “Mom—maybe you should first have the surgery and then see how it goes. If you don’t like how it turns out, then you can have the amputation.” She waffles back and forth just like me.

Annika just wants to make sure that we make the final decision together as a family. She doesn’t want anything happening without having had a chance to hear the pros and cons and sharing her own insight into what she thinks should happen. After all—it affects them just as much as me.

I called Dr. Carbonell and he absolutely agrees with what these doctors have said. I have so appreciated all that he has done for me and so it feels good to me to have his blessing.

I am having a follow-up appointment with Dr. Hutson on Monday—just to have a chance to ask him some more “quality of life” questions about the CT surgery, and to inquire about an “Ertl” amputation that claims to cause less phantom pain. I also want to get the names of some people who have had the CT surgery so I can talk to them.

So many people have already tenderly shared their own concerns and ideas about each option. People on my ankle fusion support groups (they actually exist!) have all written me to share some of their personal experiences. I have googled so far into the dark corners of the Google dimension to find as many medical papers written about this topic.

Doug assures me that we will come out better because we have gone through this—but I still have such a heavy heart. I’m not really sad because I feel like both options are really quite do-able. I just dread that we might later resent or second-guess our choice.

In all honesty—I am not leaning one way or the other at all. I genuinely have absolutely no idea which way to go (fantastic!).

So, we wait, listen, research some more, look for signs from God (Cloud formations spelling out the letters CT? A funky new line of art-themed prosthetic legs?), and pray in earnest that God would lead us to a decision that brings us peace.

We have a few weeks to reach a decision.

Again, I thank the Lord every day for each of you. We treasure your prayers, encouragement, and love.

With so much love,

Anne

Friday, February 26, 2010

We have UNION!

After three months of being non-weight bearing, I finally got to go to Dr. Carbonell to check on the status of my ankle. The X-ray revealed the miraculous growth of my bone! Basically, my bone has grown through and around the cadaver bone that was inserted into my ankle during the surgery in November. The bones of the ankle have also fused together into one non-moving mass. This is awesome news.

So, now that step one of my healing is completed, we are on for the next step. Basically, the bone has grown—but now it needs to be strengthened. My ankle still wants to flex in order to walk. Therefore, if I were to step on my foot without the boot, the newly-formed bone would most likely break. So, for the next six weeks, I need to SLOWLY and gradually begin putting more and more weight on my foot (while wearing the boot). This will cause the bone to become more dense and strong.

Sounds strange, but Dr. Carbonell explained that this process is called Wolff’s law of bone growth. It is so cool. In the 19th century, Wolff discovered that the bone of a healthy person or animal will adapt to the loads it is placed under. If the loading on a particular bone increases, the bone will remodel itself over time to become stronger to resist that sort of loading. So the bones of a racquetball player’s racquet-holding arm will become much more dense and strong than the bones of the other arm. Likewise, astronauts who spend a long time in space will often return to Earth with weaker bones, since gravity hasn’t been exerting a load on their bones.

So—hopefully Wolff’s law will work its magic on my ankle so I can one day walk without this boot.

Although I have a way to go, it is wonderful to see a ray of hope at the end of the tunnel.

Dr. Carbonell also told me that I can now DRIVE! Doug has been driving all of us (and my scooter) for the last three months. Although it has been nice to have just one kid in my car at a time, leave school when I want to, or avoid going on errands—I have to admit that I slightly miss our family togetherness time in the car.

Having been on my scooter for a long time, I have gotten pretty good at zipping around the house and our school campus like a woman on a mission. Now I am back to travelling .02 miles per hour on my walker (and looking about 129 years old). No big deal. It is just so nice to be getting closer to walking on my own. The kids at school are so excited to see me walking “like a normal person.” They have prayed for me so faithfully and are encouraged to see any signs of change or improvement. So sweet.

Dr. Carbonell also told me that I can sleep without wearing my boot. So wierd. In the past, I have always slept on my belly. However, ever since I fell I have had to sleep on my back with my leg elevated in the boot. Well, the other night, I tried for the first time to sleep on my belly. My foot felt so naked and vulnerable—I hardly knew where to stick it. So, since my foot doesn’t bend anymore, I find that if I scoot down way under the covers and let my foot fall off the end of the bed—I can sleep on my stomach—and keep my foot safe. Sweet victory!

I feel so blessed to be moving forward. I thank each of you who have faithfully prayed for me and my ankle. It feels so good to have a big thing go right in my healing. I just have to try not to do anything dumb during the next six weeks to mess it up! Thanks for your prayers.

Love to you all!

Anne

P.S. My amazing Grandma turns 90 this weekend and she is having a big party in Chicago. I am bummed that I couldn’t be there but I didn’t dare try to tackle icy sidewalks and unknown terrain with my walker. I love you, Grandma! Happy Birthday!

Sunday, January 17, 2010

Today is the one-year anniversary of my fall. So weird to think that one year has passed.

My Auntie Jan called yesterday around noon to say she was thinking of me. Although the actual anniversary was today, it would have been yesterday (on a Saturday) at about noon that the ambulance would have been called to our house. Strangely enough, Saturday was a beautiful day and Doug was itching to get out to do some yard work. Fine--as long as no ladders were involved.

My Mom called last night to say that she was feeling a little sad--just thinking back to last year and what we have each been through this year.

Doug won't admit it--but I can tell he is down. This has been a very waring year for him. Each of the small gains we have made in my healing have always been followed by some new bad news. I think the emotional roller coaster ride has been very long and hard.

Dad wanted to take us all out for Thai food tonight to mark the one year mark. He delivered a sweet toast at the meal--noting the changes in all of us as a result of my fall. Annika has become very responsible and organized. Elise has become a servant helper. Doug has been a nurturing husband--willing to take on tasks and responsibilities without complaint. Mom has become a great taxi driver. And me--well he said I had become a woman of great faith.

So, tonight I am just grateful to everyone who has helped us get through this year. We could not have done it without you.

My greatest prayer is that I will be walking--through whatever means necessary--by this time next year. That would be nice.

Love to you all--

Anne

Saturday, January 9, 2010

Yikes! January 9--where have I been?

First--Happy New Year to all of you, my faithful and wonderful friends! We spent the New Year's Eve with the Kern family down at their Keys place. A little before midnight, the kids put on glow necklaces and started throwing those Pop-It things at anything that would make them explode. They were so happy--writing their names in the air with their sparklers, scaring each other in the dark, howling at the blue moon overhead, and creating fires out of fallen palm

fronds (making me very nervous). We were so busy that the sudden appearance of fireworks in the sky was our first indication that it was indeed--2010.

Standing on the dock watching every firework display going off for miles down the shore, I suddenly felt like I was being given a fresh start. It was a new year--2009 was gone--with all of its struggles--and we were starting new.

It is so weird, but ever since then, I feel like I am on a new journey with my ankle. My scooter, boot, dressing changes--they all feel like something that has been with me forever. Somehow they have become my "normal"--almost like they are just another one of life's mundane chores like brushing your teeth or walking the dog. So, wondering if my bones will heal, the infection will clear up, or if I am facing an amputation in a year or two--all feels like a journey that we have just started--rather than a continuation of the struggles of the past year.

So, with great joy I returned to work this week and was reunited with all of my faithful students. Although I am wiped by the end of the day--it is a "good" wiped. The biggest difference is that I am in no pain. So wonderful.

My infectious disease doctor was initially pleased with the appearance of the scab over my wound--only to become suspicious when it became wet with drainage and smeared off. Although it is almost 7 weeks post-op and my one stubborn spot refuses to close up--he is remaining "cautiously optimistic" that my wound will close. He took my off the IV antibiotics last week saying that the antibiotics have done all they can at this point. Now it is a waiting game to see if things starting going downhill. I am just praying that the wound will close. That would be so reassuring.

Dr. Carbonell said that he saw some signs of bone growth on my last X-ray but we won't really know anything for sure until April. Until then, I may not put ANY weight on my foot. This means that I am always on my scooter, and (the real bummer) I can't drive. We made it one week so far with all of us sharing one car and we survived. We'll have to see if we are still speaking to each other by Valentine's Day.

I feel compelled to thank all of you who have been praying for us and helping us get through this rough year. It has been a tough journey--but filled with precious life lessons that will help us weather the future storms that come in living every day.

We love you so much--

Thanks to you all!

Anne

P.S. If you are wondering where all of the old blog entries went--just look at the "Blog Archive" in the right sidebar and click on "2009."

Sunday, December 20, 2009

There have been so many times in my life when I have been at a loss for words (shocking--but true). Standing in front of a Mom who has a son in the hospital with cancer, or a young girl who is sad about her parents' upcoming divorce--I can listen and sympathize--but I really can't fully understand what they are going through because I have never experienced those things myself.

This Christmas, I have been thinking a lot about Doug's Mom and my dear Aunt Jan. Both of them lost their husbands suddenly and unexpectedly during the last year, and will be facing their first Christmas without them. My prayer would be that there are some women out there who can come alongside them with understanding that comes only from experience.

I know that I have the same thing with my ankle. When I share with someone some of the tentative reports coming back from my doctors and my peace with possibly facing an amputation, the simple response of, "Well, you just have to stay positive," can sometimes feel like a judgement. Although I know that their words have good intentions, I still feel like I have to defend myself saying, "Well, I am being positive--it's just that having been at this for a year, I kind of know the warning signs and need to be realistic, blah, blah, blah." On the other hand, when Sarah (my email friend who fell of her roof and is recovering from horrific injuries) emailed me after my last blog entry and said, "Anne--you just have to stay positive," it kept me going for the next week. Weird how that is, huh?

I guess it just makes me realize that the personal struggles we have each encountered in our lives make us unique agents of love and comfort. Our pain and how we got through it can be transformed into one of the most valuable gifts that we can give to others. Cool how that works.

Anyway--when you sleep all day and then can't fall asleep until 3 a.m.--these are the things one thinks about. :)

As for my silly ankle, my infectious disease doctor has been encouraged by the gradual decrease in drainage. In fact, when I changed my dressing this morning, there was actually a scab forming on the spot that is always stubborn to heal. Ask Elise--the girl is so excited about my scab (Mom--last time it took almost 7 months to heal and this time it has only been four weeks!!!).

I have been a good little patient and stay still with my foot up--only going out for doctor's appointments and church. Dr. Carbonell spelled things out really simply. Basically, over the next three months, if my bone begins to grow into the cadaver bone, then I might possibly be on my way to starting physical therapy! The success rate for this is about 60% so that is why he put the bone growth stimulator inside of my foot. The process of the capillaries and other tissue beginning to grow inside the porous cadaver bone is extremely delicate--therefore it is very important that I not move my foot unnecessarily. And then, of course--if there is any kind of infection, the fusion may never happen at all.

If my bone does not grow into the cadaver bone, then I will have another big surgery around May-ish. They will basically do this fusion surgery again, but this time use bone harvested from my pelvis to increase the chances of the bones growing together. The harvesting process is apparently very painful--therefore they always start with the cadaver bone.

Blah, blah, blah . . .

Doug has been amazing at taking care of all of the household stuff, kid stuff, cooking stuff, as well as all of the preparations for Christmas. If ever there was a man who deserved to be pampered on an island somewhere--it's Doug. He and the girls have been incredibly patient. I just pray they won't still be serving me breakfast in bed by this time next year.

My parents' neighbor is a postman who works with a man who grows out his beard each year to be "Santa." Every year, Raffi and his wife host a big party outside their house and arrange for Santa to show up on a big red firetruck, red hotrod, etc. Very sweet.

Anyway, those are my thoughts for today. I love and appreciate all of you so much.

Pray for union.

With much love,

Anne

P.S. I put a link to the "Carol of the Chins" on the side bar just to give you a stupid laugh. It reminds me of the skits we used to do for our church youth group fundraisers. An oldie but a goodie. Just type in the name of any Christmas song and they will sing it for you. If they don't know it--they will let you know (12 days of Christmas always cracks me up).

Thursday, December 10, 2009

OK--don't worry--I'm not standing on the railing of a bridge somewhere. I woke up on Monday morning--ready to face my fears. I called the insurance company and found out that they were just making a courtesy call (would have been nice if they could have indicated that along with the scary message they left on my answering machine). I went to Dr. Carbonell and he felt pretty confident that my drainage/bleeding issues were unusual but normal. I was able to clear up some questions about how much I was allowed to move my foot, keep it elevated, etc. So, since then, we have been doing book reports, taking Christmas card pictures, and sleeping (I do a lot of that).

So, just when things were seeming dandy, I went to see my infectious disease doctor today. Not good. Turns out that the pathology reports coming back on the bone taken from my ankle show that the bone is infected. Furthermore, the drainage that is coming out like gang-busters from my incision site is a scary sign that there is still infection inside. Dr. Jacobsen's gut tells him that the bone is not going to fuse because there is still debris inside the wound. Dr. J and Dr. C spoke on the phone today, and Dr. C indicated that there are still small pieces of metal lodged inside the bone. However, for him to remove it all, he will have to destroy all of the bone that we need to fuse. I don't know exactly what it all means--but it doesn't sound good to me.

I actually had the courage to buy a pair of rocker-bottom shoes online the other day. I thought--I just might be wearing these things by summer. Today, I am finding myself googling "lower leg amputation" instead.

Don't worry--I'm not giving up. I want this baby to fuse. But the writing on the wall is looking all too familiar.

We haven't let on that anything is up to the girls because they are really hoping and praying that this fusion surgery might be a sign that this ankle ordeal is almost over. I don't want to freak them out.

When I was doing a little research about amputation, I had to laugh at this little cartoon included in the take-home instructions following an amputation. Doesn't that look like the happiest little amputee you have ever seen? I can't tell if he is in pajamas or just so excited to get back to work that he is wearing a suit everywhere he goes. Gave me a laugh.

So, today I am praying that we can beat the odds and get these bones to fuse. I pray that God will give my doctors wisdom to work with each other for the best outcome possible. I just don't want to still be talking about ankles next year, you know?

Love to all of you, my dear friends . . .

Anne

P.S. OK--I was done. But I just got this email. The memo read, "Funniest Christmas Picture Ever!!" Oh yea, I am just CRACKING up.

The caption under the picture reads, "Good news is that I truly outdid myself this year with my Christmas decorations. The bad news is that I had to take him down after two days. I had more people come screaming up to my house than ever. Great stories. But two things made me take it down. First, the cops advised me that it would cause traffic accidents as they almost wrecked when they drove by. Second, a 55 year old lady grabbed the 75 pound ladder and almost killed herself putting it against my house and didn't realize that it was fake until she climbed to the top (she was not happy). By the way, she was one of the many people who attempted to do that. My yard couldn't take it either. I have more than a few tire tracks where people literally drove up my yard."

It's all funny until it happens to you . . . :)

Sunday, December 6, 2009

I had one of those downer days today. Just not feeling very hopeful. I know, I know . . . think positive. I am. I just had a few setbacks (pain, bleeding, insurance hangups) this weekend that made me feel down.

Which brings me to an email I received last week. I get this email from "Sarah" who somehow found my blog on the internet. She, too, fell while dealing with blasted Christmas lights. However, this amazing woman is in her early twenties and has been at this for two years now.

She wrote, "My own journey began when I fell off our two story roof on November 30, 2007. My left leg and foot took the worst of it, I shattered my calcaneus, talus, and the lower part of my tibia and fibula. I had spiral fractures running the length of my tibia, followed my a tibial plateau fracture. My knee cap was dislocated, and tore my ACL, MCL, PCL, patellar tendon, medial, and lateral meniscus. My right ankle sustained a trimalleolar fracture, which has healed wonderfully, leaving me with very little or no pain at all. I had a total of three separate pelvic fractures, which required the use of an external fixator to hold it together while healing. Then moving upward I fractured my L1, and L2 vertebrae, which thankfully didn't cause any spinal cord damage. Followed by a broken left wrist and elbow, which required surgery as well."

Bless her heart, she has recovered from the majority of her injuries--except for her left ankle. She had almost the same surgery I just had last February, but the bones did not join. She is now struggling to decide whether to amputate her leg or to spend more time in an external fixator.

We could share that idea of feeling like life is passing you by as you wait for your body to heal. Sarah tells me that she thinks I am so strong--when it is SHE that has inspired me.

I had a down day, yes. But if Sarah can still have dreams of getting back to college, starting a business, and getting back into life--than so can I. Good grief--I am just dealing with an ankle.

So for today, I would love it if you could pray for my new friend, Sarah. She doesn't like people feeling sorry for her (I can relate). But she really needs to decide how to move forward with her treatment. As for me, I pray that a few financial details can get worked out tomorrow and that my doctor can give me some encouraging words on my healing so far.

Love to you all--

Anne

Thursday, December 3, 2009

Howdy! I just got back from hearing Annika sing in her school Christmas concert tonight. I missed her Spring concert last year because I was in the hospital so I really wanted to try and make it. After struggling to assemble the dumb wheelchair in the parking lot, Doug and I managed to get me to the auditorium. She said we embarrassed her because we were smiling so big in the front row (handicapped seating). So sweet.

Speaking of sweet--some wonderful people in our church felt badly that we all missed out on a "normal" Thanksgiving day. So, they all pitched in and made awesome food for us. I'm telling you--I think we are going to milk this ankle injury thing for all it's worth!

Well, I went to Dr. C yesterday and am now armed with all my X-rays. Ready to pretend that you are a radiologist??

First, I want to introduce you to my new bionic foot (insert cool Bionic Man music here).

I wasn't quite catching the angle of the screws from the side shot, so I made up this one from the front:

Next, I wanted to see how my ankle slowly went downhill, so I made up this slide:

It is so amazing that even though my talus was shattered at the beginning (in the first picture), look at that awesome space of cartilage above the talus! That just slowly gets smaller and smaller as it dies over the following months. Sad to me.

Finally, I was looking at my X-rays and thought I was just seeing things . . . was that my fibula cut off like a dagger in my leg??? So, I called Dr. Carbonell just to see if I was going crazy. Yep--it's gone. He cut the dumb thing off.

I almost feel like I should have kept it and given it a burial or something. Turns out, your fibula is a non-weight bearing bone. It is designed to help your foot/ankle manipulate uneven surfaces. Now that my ankle is fused I don't need it anymore. Best of all--everyone always suspected that the fibula might be harboring some bacteria because it had that metal plate on it for so long. No fibula--(hopefully) no infection.

Looking over all these images just makes me so sure of what I need to pray for . . . UNION. I would covet your prayers that the cadaver bone, and my smooshed up leftover talus, and shaved off tibia all grow together in a healthy chunk of ankle. If they don't, I am seriously looking at amputation.

Pray for union.

Pray for union.

Pray for union (or for more patience to endure what else might come next).

OK--now that all of you are ready to head the radiology department of a hospital near you, I am going to bed.

Love to you all!

Anne

Tuesday, December 1, 2009

Hello, I'm home! Mom and I left the hospital around 7:00 pm on Monday night and finally got home. The house was neat, Doug was working on spelling words with Elise, and Annika was getting her stuff ready for school. Sweet, sweet, sweet.

Since then, I really haven't left my bed other than to go to the bathroom and sit in the living room to look at our Christmas lights (no ladders were used in the hanging of the lights this year). I just want to be still and rest. I don't want to do anything to mess up the outcome of this surgery.

One of Dr. Carbonell's residents, Mai, came by to see me on Monday and took all of the bandages off (Click on "Great Fall Wound Pics" to see them). The stitches look awesome. There is a large incision site on the right side of my ankle, and then two smaller sites on the left side and under my heel. These are all the places where the screws would have been put through the bone. I can't wait to see copies of the X-rays to see what is in there.

Lord willing--I really think these will heal up in a few weeks like normal wounds (not like ones that take 10 months to heal).

I make a ton of noise with my walker at night (the four trips to the bathroom, getting my antibiotics loaded into my PICC line, taking meds, etc.) so Doug is sleeping in Elise's room. Besides juggling all the responsibilities with the house, kids, etc.--he is getting back to school, and dealing with a lot of sadness. I want for him to get as much sleep as he can and let my night nurses take care of me.

So, Annika slept with me last night. We cuddled, read, and talked about her trip to Michigan. It was so nice to be with her. She suddenly seems so much older to me.

Tonight, Elise and I did some homework and then watched a movie of the Nutcracker (starring none other than a very young Macaulay Culkin as the Young Prince). She is going to see it in real life tomorrow on a field trip with her class. As my night nurse tonight (here she is on duty), she made me promise that she could put the flush and heparin in my PICC line tomorrow morning.

I have to mention that Shannon, my dear niece back in Michigan, colored in this beautiful poster for me as a get well card. It is now next to my bed making me feel better. I, too, will someday be a Beach Princess (or at least be able to get my foot wet with salt water!). Thanks, Shannon!

I should be going to see Dr. Carbonell soon so I will let you know what is going on then.

Love to you all, my friends--

Anne

Sunday, November 29, 2009

Dear Lisa and the Carpers came by to visit today. I promised them that the trip up to my room would be worth the view. The view of the outside of the elevator shaft--that is. Gorgeous, isn't it? If I hobble over to the far side of the room, I can look at parked cars. Very inspiring. They say that patients heal much faster if they can see something from nature outside their hospital room window --a tree, growing grass, flowering plants, etc. I am drawing my healing power from painted stucco. It must work on some level because I am feeling pretty good today. I am now on Percocet (no delaudid anymore) and am feeling like my mind, body, and spirit are in balance. Thank goodness. God is good.

And now for the best thing ever . . . my babies are back. Mom picked them up from the airport this afternoon and drove them straight to the hospital. My cell phone was ringing before they even got here. Annika was feeling a little stressed that she didn't feel prepared for school tomorrow--wondered what homework she should be doing--what outfit would be clean and nice for her first day back, etc. etc. Meanwhile, I hear Elise screaming in the background about every imaginable detail of their time in Michigan. I don't think it had even occurred to her that there was a school in Miami--let alone a school that SHE was going to have to be at tomorrow. Hilarious. Yes, my two little girls do march to the beat of different drummers. :)

After visiting with my sweet family, there are a few things that can be said with certainty . . .

1) My girls LOVE their cousins.

2) They wish they could live by their cousins.

3) They are excited for Christmas to come.

4) Seeing me in a hospital gown isn't as scary as it used to be.

5) They are ready and willing to help me recuperate from the surgery--such troopers.

6) My Douglas is very sad that he doesn't have a Dad anymore. You can tell that he literally feels sick in his heart.

It felt so good to see them again. The girls looked so much older to me--so grown up. And Doug just looked plain handsome. I loved being able to feel them again.

I hope that this Christmas season can be a time of both physical and emotional healing for us all.

Love to you all--

Anne

Saturday, November 28, 2009

Well, I am still in the hospital and will be staying here until Monday.

It has been a weird few days. On the one hand, you desperately need the pain meds because--without them--you would seriously consider gnawing off your foot with your own teeth just to escape the pain. On the other hand, the combination of these meds and the pain sends you on a mental journey that travels between feeling so happy and loved and content, to feeling tormented, miserable, and depressed. So, while enduring each moment of this journey, you are being asked to stay still, have your first bowel movement, prove you can use your walker, scale your pain from a one to a ten, drink pro-biotic drinks, remember to ask for your pain meds (they can't just give them to you--you have to ask for them), and keep out a watchful eye for any unusual or suspicious symptoms. It sounds simple, but it is actually quite weird and yucky (best way I can put it).

So, WISELY, Dr. Carbonell wants me to slowly wean myself off of my pain meds before I leave the hospital. Yesterday, I was allowed to have 2 ml of dilaudid, while today I could only have 1 ml. Tomorrow--no more dilaudid--just percocet. I am not looking forward to it. Although I have felt much clearer today by being on less pain meds, the pain is obviously more intense. Tomorrow should be interesting.

My Mom just arrived and we are going to watch a movie on my laptop together tonight. Sweet to just hang out with Mom. Just to give you a little insight into how she feels about me . . .

Last night Mom said, "Honey! You got a star on your door! Did you do something special?? You better ask!" All night I quietly wondered if maybe I had been nominated for the "Positive Patient Attitude Award," or "Patient Most Likely To Walk in the Near Future." Turns out that a star on your door means that you are a "fall risk." Just keeping me humble.

OK--hopefully I will be getting another PICC line put in my arm on Monday morning, making a quick stop to the Infectious Disease office for some antibiotics, and then home to my bed.

I can't wait to see my precious husband and kids again tomorrow.

Love to you all--

Anne

Thursday, November 26, 2009

Hello! My surgery went without a hitch on Wednesday afternoon and I was back in my room recovering by 10:00 pm. The pain is ridiculous. My Mom faithfully wiped my brow with a wet washcloth as we struggled to figure out the right mix of pain meds to make my life tolerable. It is now Thursday night and I am feeling the need to put up a few pictures to share a few details of the last few days.

Once again, I am blown away by the kindness of strangers. My doctors and nurses are endlessly giving, kind, intuitive, patient, caring, and informative.

This is the face of Dr. Carbonell who has faithfully seen me through a ridiculous amount of ups and downs over the last 10 months. I am very grateful to have such a wonderful doctor. One of his residents stopped by yesterday to give information and answer questions about my surgery.

Amazingly enough, he told me that they were shocked to find three remaining fragments of landscaping fabric still hiding out in my ankle.

Unbelievable.

This is the piece of bone taken from the calcaneus of a cadaver and cleaned up and sent to me. When Dr. Carbonell got in my ankle, he discovered that the bottom half of my talus was still alive while the top half was dead and crushed. Therefore, he sculpted this cadaver bone to replace the top half of my talus. He also inserted a battery operated bone growth stimulator next to this bone to encourage it to grow into the other bones.

Among the many doctors and residents who watched Dr. Carbonell perform my surgery were my old dear friends, Bozena and Maribel. These lovely women were there for me during my first three weeks in the hospital following my fall. They saw me through some very dark and scary times with lots of love, advice, and information. It was delightful to see them again.

Several doctors have raised a few concerns and are having me take a few precautions. 1- I am now on blood thinners to eliminate the chance of developing a blood clot in my ankle. 2- I am blowing into this contraption 10 times every hour to decrease the chance of fluid building up in my lungs while I recover. 3- I am on antibiotics to keep any chance of bone infection at bay. Dr. Jacobsen (my infectious disease doctor) stopped by yesterday and told me that I might have a PICC line put in again so that I can take 6 more weeks of IV antibiotics at home. He doesn't want to have the bone infection issues with this new bone that I experienced with the old one.

One way to get out of making a Thanksgiving meal is to have a major surgery during Thanksgiving Break. I was delighted to find this lovely feast on my meal tray today. Awesome!

Well, it turns out that seeing the Sponge Bob float while on pain meds was neither an opportunity to fly above New York, or a terrifying experience. It was just a plain old Sponge Bob float. So now I know.

So this is what I know. I know that I have the most wonderful husband who is grieving the loss of his Dad while faithfully checking up on me. To say that he is "so sweet" doesn't begin to describe the man. Just the sound of his voice on the phone is an immediate comfort.

My Mom has been amazing while seeing me through some very rough times of extreme pain. Even at 40, there is nothing better than cuddling with my Mom to make me feel better. I think the whole experience has been a boost to her self-image, too--Two people today asked if my Mom and I were sisters.

My dear girls have been asked to get through some pretty rough stuff over the last year and they are handling it beautifully. I love them so much. I can't wait to feel their tiny hands in mine. I feel so blessed to be surrounded by such faithful friends. People have already offered to make meals or drive the girls home from school when Thanksgiving Break is over. Amazing to me.

Some of you have asked about my Dad. It turns out that--unbeknownst to anyone--he had a mersa infection while fighting a case of mono! When he went into the hospital, as the doctors treated one symptom, it would aggravate another. It took a "House" style of doctor to finally put it together that he must be suffering from a virus--tested him for a few--and came back with a positive result for mono. Dad is now at home recovering from what was a severe blast to his system. So glad that he is still with us.

As for me, I continue to feel blessed all over.

I love all of you so much.

Talk later (when my head is clearer).

Anne

Tuesday, November 24, 2009

Praise the Lord--I am in the hospital! I was admitted tonight and am going through the motions of getting ready for surgery tomorrow afternoon at 4:30.

Here's what is on the menu for tomorrow . . .

My ankle and sub-talar joints will become permanently (hopefully) fused using seven screws as stabilizers. Because my talus collapsed, "cadaver bone" will be used to replace the destroyed bone. Dr. Carbonell will also insert a small battery-operated bone growth stimulator inside my ankle to encourage the bones to grow together.

I will most likely be in the hospital for a day or two following the surgery to help manage the pain. This means that I will be watching the Thanksgiving Day Parade and the Dog Show while on some serious pain meds. Lisa thinks that I will be on this happy high--thinking that I am soaring through the air like the Sponge Bob float in the parade. However, judging by the way those meds made me feel the last time I had a big surgery, it is more likely that Sponge Bob will be coming out of the T.V. to devour my ankle. I'll let you know how it goes.

Once again, I feel absolutely showered with blessings. From the Thai food meal my parents and I ate before coming to the hospital, to the doctors who were expecting my arrival and had everything ready to go when we got here--life could not be better.

Here is the most amazing thing . . . On the way to the hospital, my Mom told me that she had run into a woman (named Loretta) this morning at church who has been faithfully praying for me every day since my fall. Even though I hardly know her, Loretta has had a burden on her heart to pray for me. OK--so that's amazing. But what was even more amazing, was that when we arrived in my hospital room, guess who was my nurse for the evening--LORETTA! My Mom just about burst into tears. Loretta set me up with a private room and even brought me my favorite hospital midnight snack--jello and crackers.

So--Can you see why I never question God's plans? Unbelievable.

OK--so I am tired and ready to go to sleep in my nice bed. I am happy. Missing Doug and the girls, but happy.

By the way, Doug has been having a blessed time in Michigan while mourning the loss of his father together with his family. They have been able to talk to so many people who have expressed such deep love and respect for Dad Heetderks. He was quite a man.

Love to you all--

Anne

Sunday, November 22, 2009

Late Saturday night, we received a call that Doug’s Dad had died. It hardly seems possible.

When I think of him, all I think of is a man who was always filled with life. Doug’s Dad was a middle school principal, Science teacher, career elder at his church, director of a children’s Science camp, lover of nature, faithful servant, loving husband, awesome Dad and Grandfather, and one heck of a father-in-law. He was wise, kind, patient, and knew how to cut through nonsense to get to the simple truth. When you were with him, you were always learning something new, or discovering something you had never thought of before. Whether collecting eggs from his chickens in the backyard, picking up leaves at Camp Roger, or taking a walk in the woods, Dad always made you feel special and happy to be with him.

After much deliberation, Doug and the girls left this morning to go to Michigan for the wake, funeral, and Thanksgiving break. I so wish that I could have joined them. However, Doug and I both knew that knocking my ankle around while travelling would not be helpful for anyone. Part of me hopes that I can have my surgery while they are gone just so the girls don’t have to see me in the hospital. We will see. The girls were very brave—they said that Grandpa was such an “alive and active” man and that they didn’t want to think of him as being gone. Doug is very sad but feels a great deal of peace knowing that his dear Dad is in heaven breathing with ease. Dad Heetderks was not a man who would have wanted to be hooked up to a respirator.

I know that many have said that our family has been hit with a lot over the last year. It is true. But somehow God has given us the strength to get through it. It hasn’t always been pretty—and I grieve for our girls—but we have been given the opportunity to be lifted up by God and others in ways we would have never known had we not gone through this time of trial. Seriously.

I will write more later when I know more.

Love to you all.

Anne

Wednesday, November 18, 2009

On Monday, I went in to see Dr. Carbonell with my faithful friend and teaching assistant, Lisa Arslan. My head was full of a lot of things.

- My Dad had been admitted to the hospital over the weekend with strange, serious symptoms. While at the office, my Mom called and told me that Dad had tested positive for a mersa infection and that his liver and heart were under a great deal of stress.

- Doug’s Dad was continuing to have many up and down days in the hospital. We were hoping that new tests might reveal a better way to help him to improve.

- I was in a lot of pain and was concerned about taking more and more Percocet to get through each day. Yuck.

When we arrived, Dr. Carbonell was able to see me right away and started assessing what was going on. Our first surprise when we took off my bandages was to see that my wound was healed! It had been acting like it was going to close over the previous weeks but we weren’t sure when if would finally happen. The closed wound looks like a squished bellybutton—just big enough to hold a tick-tack (gross!). Dr. Carbonell told me that when I have my big surgery, he will cut out the bellybutton and sew it back together as a flat piece of skin. Who cares—I can take a real shower now for the first time in 10 months!!!

The next thing he did was to take out three huge needles and fill my ankle joints with Cortizone. Although I didn’t feel any difference while at his office, I felt like I was ready to take up ballet dancing by the next morning. It was wonderful to live without pain for a few days.

Finally, we took a new X-ray of my ankle. When we looked at the image of my foot on the screen, the first thing I noticed was that the metal was gone. Duh—I knew I had just had a surgery to take it out but I hadn’t seen it until just then on the X-ray. The next thing we noticed made us all go, “Ohhh . . . .” My talus had collapsed. The talus is the bone that was shattered in the fall, put together by my brilliant doctor, started to die, but was holding its own. The plan was to fuse it together to my tibia this summer—making it unable to move but pain-free (hopefully).

The fact that it has collapsed means that I really need to do the surgery right away. When you look at the X-ray, you can see that the tibia is out of place on top of the talus. This explains why I have been in so much pain (thank goodness--I was beginning to wonder if I was just being wimpy). Dr. Carbonell will take some cadaver bone and build up the area that has collapsed so that my legs won’t end up being different lengths. Then he will continue on as planned, putting screws through my foot at different angles so that it will hopefully “fuse” into one solid piece. The recovery will be intense and long. Right now, I am hoping that we can do the surgery soon so that I will only miss the three weeks between Thanksgiving Break and Christmas Break. Time will tell.

Now that we have had some time to think and do a little research, I am planning to meet with Dr. Carbonell on Monday (the 23rd) to figure out what we will do.

Good News mixed with Bad News.

Today we give thanks for a closed wound. We have prayed for this for so long. I had imagined a Wound Closing party for a long time and now it is kind of mixed in with a whole new hurdle. That’s OK. I am almost relieved to just take this battle on and get it over with. If this is God’s plan, I’m all about it.

Love to you all--

Anne