Kids, Internet & Texas ahead ....

I heard back from the Texas surgeon today, as I had sent him an update & pictures (via e-mail) on Monday. He agreed that part of the area is a bit deceiving and possibly looks closed, although he thinks we are correct in sticking with our original “surgery plan” for Monday, May 12th. He said that unless the area completely closes by the end of next week (fairly unlikely), we are on the right track. His office is supposed to call me tomorrow with a surgery time for Monday, May 12th – will likely be early morning. He knows & is in full agreement that the last thing we want is to not do enough with the next surgery to fully correct the problem, so we both know that we will do somewhat more than may seem necessary (due to past history). Still very grateful that the TX surgeon takes the time to communicate via e-mail.

There is a certain amount of “mental preparation” that takes place before a big surgery. I’ve processed it … know what is coming and am ready to move forward. Long haul ahead still, but God’s grace has carried us this far and will continue. Being away from work for four weeks may be the hardest part, but I’ll get through it. There is some comfort in knowing that I don’t have to get well quick & hurry back to work.

Tonight we stopped at AT&T on the way home from work and made sure that my laptop has what we need to connect to the Internet at the hospital …. so there are no surprises! The sales guy spent over an hour with us, but we are set and ready to connect – there should be no problems when we get to Texas. We can connect to the Internet through my cell phone and only had to do a special contract for the month of May – good news.

I am swamped at work, which has been somewhat good this week. It has kept my mind occupied and there has not been a lot of time for worrying. I am attempting to hire 2-3 individuals in the next several days for summer camp in June. I sent out an e-mail to past parent volunteers and had a huge response today; clearly lots of people need jobs.

Funny story that happened with kids at work yesterday ….
At the beginning of every visit day I do “training” on equipment at our television station. The kids to a broadcast, record interviews, and operate real TV equipment. I was giving my usual speech to two kids that were totally preoccupied and enthralled with the pins in my toes. They were not listening to anything I was saying and their eyes were glued to my foot. I finally said, “Okay …. everyone come look at the pins in my toes for 30 seconds and then I need you to focus on directions.” One kid looked at another kid and said, “That looks like the worst pain you could ever imagine …. We have no problems compared to her.” It was all I could do to not tell them to enjoy the carefree lifestyle as a fifth grader. I assured them that it wasn’t painful & then everyone got back to work beautifully.

The Cubs and Cardinals play each other this weekend. My Chicago orthopod and I are both cheering for our home teams, so we’ll see what happens. Go Cardinals!

Love,
Jenny

Colored toe pins ...

Everything went as planned at our post-op follow up appointment this morning with the STL surgeon. Funny thing .... The surgeon came walking into the room and asked us if we liked the various colored pin heads. I commented that he knew my love for color and that they were definitely something "new" in the process (all the pins are usually just white). He had to tell us how he intentionally used different colors and how he had to work to get the blue one in place. He had to drill a special sized hole to get it to fit! He said that the operating room staff probably thought he was crazy for taking extra time and using various colors. He knows me better than I thought! I was impressed that he even thought of not using all white. On the x-ray above, you can see what the long pins look like on the inside (click on photo to make larger). Each pin is similar to a long pick-up-stick.

More pain today and significant drainage, so I am ready to get on with it. Part of me wishes we were going to TX this week, but there are too many plans for me to rearrange to move it up. I need time at work to get everything in place, too. The end of next week will probably be here sooner than I realize.

Headed to bed early tonight, as it has been a long day with kids, parent volunteer training, dr. appt., etc.

je

Work, Dining Out & Thoughts ...

I am taking it day-by-day and am doing fairly well, so far. I am putting some weight on the foot (in a surgical shoe) and then when it starts hurting, I resort back to my jazzy crutches. I lasted at work all day on Friday and only left about 30 minutes early at the end of the day. I only used four extra-strength Tylenol, so I thought that was pretty good. Thankfully, the students in JA BizTown were really good and we had some extra high school helpers that volunteered yesterday.

My staff wanted to see the “toe pearls” right away, but I made them wait until the end of the day. There wasn’t time to unwrap it and rewrap before kiddos arrived. They’ve all seen it now, so that excitement is over. My laptop arrived from Dell, so I’ve been trying to figure out all the “wireless” options, bells & whistles, etc. Dad helped me set up the wireless box at their house, so now I can be in bed and use the Internet – pretty cool.

One thing we are doing new this recovery time is something called “Dining Out Fun.” I purchased seven gift cards to various local restaurants (some lunch & some dinner). Each gift card is in an envelope and all envelopes are in a small gift bag. Each week (during recovery) we are picking out one envelope and are heading that that restaurant for lunch or dinner. It is designed to make a few meals easier on my mom and another opportunity for me to get out of the house! I think we are going to do our first one tomorrow after church.

Yesterday it became apparent (not sure why) at the amount of post-op pain that is probable with the next surgery. There will be two areas that will be hurting with the left forearm and right foot. I figure it can’t be much worse than the February, 2007 reconstructive surgery (somewhat comparable in extensiveness). There are good medications and no good doctor lets a patient go a long time with severe pain, so I’m sure it will work out. There will be time enough to think about this more in two weeks. The cast situation and long hospital stay are still on my mind, but I’m trying hard not to dwell on either right now. It is hard for me to rest, relax, and not get ahead of myself mentally. It is God's timing, process, and He continues to orchestrate events. It is easy to forget where you’ve been and how far we have come. I can do this and then when this is over, this is IT FOREVER!

Wishing you a joyous weekend filled with much sunshine!
je

Toe Pearls & Fun Crutches ...

Hi! I spent most of yesterday "out of it" and slept more than usual, due to the pain medication. It doesn't seem like one could sleep the better part of the day and then all night, but I did! I slept eight hours straight last night and didn't get up for more pain medication until this morning at 7am ... had breakfast w/mom before she headed to work. Thankful for no post-op nausea - yeah!! My STL doctor called around 6:30pm last night to check on me & he was happy to hear that all was well. I see him at 11am on Monday for a quick "wound check" of the incision area.

I spent this morning relaxing, reading, and explored a few things on my laptop. I'm going to rest and get a shower this afternoon. I've had to change the bandages over the incision area twice a day w/saline solution, so I've seen the incision area. A little less than half of it is open. I'm on a lot of antibiotics to prevent any possible infection from starting. The Chicago surgeon said (via e-mail) that when this is all over and it is closed, I will be glad that I have more mobility and movement in the foot. I am sure she is correct. I'm planning on working tomorrow at JA, but I have staff to work with kids.

The crutches are new covers that mom made for me. They are black, green and hot pink with flip flop fabrics on the center pocket area. They are super "girly" and very fun for spring/summer. I picked out the fabric, but didn't see them finished until yesterday. The colored pins in my toes will be in place until we get to Texas ... don't think they will become a fashion trend in two weeks, but you never know. I guess now I qualify for a temporary "body piercing." (Click on the crutches picture, to make it larger & you can see it better.)

We're taking it one day at a time and are pacing ourselves. It is good to have a little "break" between now and Texas. Hope you are having a great day!

je

Toe surgery went well ....

First surgery done ... yeah! All went well today with the toe surgery or and it was about what I expected. The pastoral care pastor at church met us at the surgery center and prayed with us (& for the doctor), before we started.

The St. Louis orthopod was able to get the toes to move during surgery, so we'll hope that it stays that way. He couldn't close all of the incision (original area by the big toe), so it sounds like we'd need to keep our plans w/Dr. I in San Antonio in several weeks. Part of it is still open and he wasn't able to stitch it closed. I had thought this would be the case, so I am okay with this news. The St. Louis surgeon said that it really does need a new blood supply, which is what Texas had thought in the past several weeks. At least the forearm graft is on the under side of the forearm.

I had a great anesthetic person and he set up this imagination Hawaii scene verbally, as I drifted off to sleep. We also did an anesthetic "block" behind my knee, so I won't feel a thing for the next 24 hours .... it is a good thing. A little nausea, but medication has helped. I have four pins in the toes that are each about 6-8 inches long. At the end of each pin is a colored ball (looks like a tack head) that sticks out the end of each toe. They will take them out during the Texas surgery. It has been a long day but mom is doing well, too.

Thanks for praying ... it made it all easier today.

Much love,
Jenny

Big Blessings Today ....

Today has been a day filled with unexpected blessings ....

My morning appointment with the orthopedic surgeon went well. The best news of the day is to my absolute delight there is NO CAST with this first surgery ... hip, hip hooray!! I was on cloud one hundred, as the cast part of the ordeal is far and away the hardest thing for me to deal with. I only need a cast after the TX surgery, so I was thrilled with this news. I thought it was going to be 7 weeks in a cast and now it will only be 4 weeks (TX surgery & after) ... I will deal with four weeks. One week is in the hospital, so technically it will be more like three weeks at home. Starting tomorrow there will be four long pins that come out of each toe (one in each toe), but I've had this before. The surgeon said that this should be a "little operation," compared to what I've had in the past. He had also spoken with the Chicago surgeon last week, which I was happy about. Good to know that everyone is "in the loop."

As I left my morning doctors appointment, I noticed hundreds of hot pink tulips that had been planted recently around the medical building and each flower was starting to bloom. I couldn't help but think that as the tulips bloom, the weeks ahead will be a time to "bloom" and shine for Him. Hot pink is my favorite color.

Surgery is at 11:30am tomorrow (April 22nd) - Outpatient ... I have to be there at 10am for prep work, so think of us at that time. The surgery is at a new surgery center, so hopefully they have a good anesthetic person.

I returned to work this morning, just as 125 kids were getting off the bus and arriving. My staff was fabulous today and they led the entire day, which allowed me to finish last minute things at my desk. I had not counted on having any "extra time," but it was a huge help.

Financial blessing of the day ... I have had a huge bill around $896.00 for a test that was needed before I went to Texas in April. I called today to confirm that this was what I owed and the gal told me that I only needed to pay $25 and that they would "write off" the remaining amount. I asked her twice if she was looking at my account and she told me "yes." I was prepared to pay whatever was needed, but wasn't happy about it seeing that the last surgery wasn't successful. God works in amazing ways.

Just wanted to share with you that God was gracious and today was filled with much happiness as there was one thing after the next that were positive blessings. I'm very much at peace about tomorrow and am looking forward to more toe movement ... all will go as planned according to Him.

Love & hugs,
Jenny

"For I will restore health to you .... says the Lord." Jeremiah 30:17

Getting ready ...

I've been busy getting things ready at home and work. I started to get a cold mid-week and ended up missing work on Friday because of it. I'm doing a little better today, but this needs to clear up before surgery ... they are picky about sniffles or illness. I have been pumping the liquids, vitamin C, fruits/veggies, etc.

I meet with the STL orthopod at 8:15am on Monday morning and will then learn of the surgery time/location for Tuesday. Can you believe they always wait until the day before surgery to tell you this? I am very ready to get on with this. There is nothing new with the wound area in the past two weeks ... still draining, lots of scar tissue in the area. The skin all around it is irritated - it is almost like it desires to close, but can't ... it is "stuck" to say the least. I'll be off work next week Tues.-Thursday and will take Friday off, if needed. May 9th will be my last day at work and then I'll be off for 4-5 weeks.

I called to the TX hospital and asked them what I needed to have Internet access from the hospital room. I got the hospital "ring around" on the phone and nearly everyone that answered the phone was Spanish sounding. I resorted to sending an e-mail to the TX surgeon and asked him the question. He wrote back and said that he'd never been asked that before & didn't know the answer, but he'd find out for me. I had to have been the youngest patient there the last time, so I'm sure there are not many Internet hospital bed users.

Pray for cold symptoms to disappear, surgeon skill on Tuesday, no nausea and good rest between now and Tuesday morning.

je

Questions answered ....

I heard back from the Texas surgeon and he answered all my questions. We have not known him for that long, but he has been so caring and positive (despite the circumstances). I am so thankful that he continues to be willing to communicate via e-mail … this would never work any other way & it is a huge blessing. It is really hard to ever speak to a doctor on the phone and he has taken time to type out long explanations.

More details about the Texas surgery from the surgeon….
The forearm flap comes from the palmar surface (underside) of the forearm, complete with its own artery, which is why it does better than your skin in another area (i.e. the foot). Success rates are 95% in the Hand Surgery literature, and in the last 15 years, he has only one forearm flap fail in a diabetic patient. (He has done over 100 flaps) The odds are good that it will work.

I will need to do complete bed rest for 5-7 days post-op to ensure flap survivability, because it is technically a "tissue transplant". After the first week, crutches are fine, but a short leg (below the knee) cast will follow for four weeks from surgery. The first week in bed with a bulky splint, then into a cast, non-weight bearing for three more weeks.

The forearm flap surgery is a "bigger deal" this time, and that is why we tried the "easier" surgery first. It is clear that your foot's healing capacity is impaired, and the flap from the forearm is the next option to promote healthy healing. The surgeon is more than happy to "stick with you" through this rough road. He ended with telling me that he has seen worse, if that is any consolation....

I am scrambling at work to get things ready and will be off Tues.-Thursday next week. No surgery time yet for next Tuesday, but I know it will be in the morning. I realize the next eight weeks will be long, but I am at peace with our decision and at least know what is ahead. There is some comfort in just having a “plan” and having made a treatment decision.

I’ve shared with my office what is happening and they continue to be very supportive, encouraging and amazing. We are preparing several part-time staff to divide responsibilities for work that I normally assume.

• We would love to borrow DVDs from friends to take with us to Texas (hospital room entertainment), so please let me know if you have anything we could use for a few weeks in May.

I also realized today how phenomenal it is that the three doctors we are working with (MO, TX, IL) all know each other & are willing to communicate about my medical needs among themselves. It is not a coincidence that they all know each other, but the fact that we started out with one and the two others have been willing to “join the team” is for sure a God happening.

Next week this time, we’ll be one step closer to recovery ….

Hope you are enjoying the sunny weather!

je

April & May plans ....

We have determined that the reconstructive surgery that was done a month ago in San Antonio has not healed as we had hoped. A very small section of the incision did heal, but the skin that was moved over to cover the original wound did not stay together when the stitches were removed after three weeks. The area has continued to drain, and remain open in about a 3” skin section. We did not make the wrong choice with the last surgical decision, as you always to try the least invasive procedure to allow the foot to naturally heal as much as possible (before skin grafting). Obviously, we must do something else to cover over the open area, and it seems my foot now needs a new healthy blood supply brought into the foot to promote healing.

At the top of every foot are 5 bones called “metatarsals.” A normal foot bends at this area (right behind the toes), and these are what allow you to walk normally, push into a shoe & provides foot movement. Because of the fusion surgery that was done in February, ‘07, I lost all of this motion. We’ve talked for over a year about removing part of the metatarsal bones, which would give me move toe movement & hopefully would provide the hope of wearing a shoe again someday.

The incision to remove the metatarsal head bones and my current wound are the exact same spot. Common sense would tell you that if I need more toe movement, now would be the time to fix it before we get the wound closed. Once the wound is closed/healed, it cannot be opened again (i.e. like forever). It is a “do it now” or “never” deal.

I would be devastated, frustrated and very upset if we got this to close and then I still couldn’t wear a shoe or walk well. I’ve looked at shoes enough over the past year to know that I cannot wear much of anything without more toe motion.

After much discussion with the three surgeons (St. Louis, TX, IL), all three agree that it is best to do the two procedures. It has been a very challenging & heartbreaking decision on our part. We had hoped that both could be done in the same operation, but that is not possible.
The plan is as follows:

April 22 – Metatarsal head removal on 4 toes – in St. Louis w/orthopod
- Outpatient; pins & cast; use the same incision that is now open
- Should allow toe movement & increased mobility when healed

May 12 – Radial Forearm Flap surgery – in San Antonio w/plastic surgeon
- Week in the hospital; cast; move skin & blood vessels from the forearm to the foot; large forearm incision & no weight on the foot for 4 additional weeks. New & healthy blood supply will get to the foot; new blood vessels are attached at the heel. Same TX hospital as were at before.

If by some miracle the skin would close after the first surgery, we would cancel the May 12th plans (please pray for that!). The second procedure is fairly extensive, but if the skin will not remain closed, there is no other option. With a new and healthy blood supply brought to the foot, it has a very high probability of being successful.

I will plan to take a short “leave of absence” from work (4-5 weeks) starting on May 12. As you can imagine, it has been an emotional and challenging week filled with making decisions that we’d hoped we wouldn’t be making. We are still trying to process it all and think through details related to the weeks ahead. We need to do whatever it takes to make the next two months a time of complete healing. There is a long road ahead over the next two months. None of this has to do with surgeon expertise or skill…we have three of the best doctors in the country working on this. Dr. Ingari in San Antonio specializes in orthopedics, plastic surgery and microsurgery. People from all over the world see him to seek his expertise and surgical skills. All of this is difficult to explain and understand, so if it seems confusing or never-ending, we understand and share some of the same feelings.

We know that God continues to be in control here and even in the details (large and small), and we truly remain hopeful that it will all work out in the end. We’ve come too far to give up now and are blessed that this is not a terminal medical situation. Thank you for praying for healing, patience, acceptance and wisdom. Your support and love has made a huge difference!

je

Emotional day & tough news ....

It has been a very long, rough and emotional week. Lots of things have not happened as I've expected, planned, or hoped. Today has been especially difficult, as three doctors have agreed on what should happen next, but it involves more major and extensive surgery. Things have deteriorated rapidly this week. All I can say is continue to pray for peace, strength, and acceptance. I've not handled news, details or any of this well. I managed to get through work today, but lots of tears, Kleenex, etc. It is not a life/death situation by any means, but it feels like it at the moment.

I'm not "with it" enough to share details yet and am not even sure if it is possible to attempt to explain it all. It will be a very long road ahead and there are lots of questions, fears, and unknowns.

Lots of prayer is best at the moment. Will share more when I get past the inital "shock" of all of this & attempt to process what will happen in the weeks ahead.

Love,
Jenny

Getting opinions and weighing options ...

We are continuing to evaluate the medical situation with the foot this week. I met with the St. Louis orthopod on Monday and he was going to talk to the San Antonio doctor via phone. Pray that this happens early this week, as nothing can progress until this occurs. The Texas surgeon is still committed to helping, but there may be a need for him to help in a larger way than originally imagined, so pray for openness on his end. His last e-mail to me stated that he will do whatever it takes …. let’s hope this holds true.

Be careful what you say to others! On Sunday, someone at church (of all places) made a comment to me about the fact that I was wearing two different shoes. The adult (total stranger) was trying to be humorous, but I was having a rough day and it wasn’t funny. Believe it or not this hasn’t happened in four years, which is surprising. It reminded me once again that you never know what someone is going through and it is probably best to say nothing. I was lucky to even have made it to church, so timing wasn’t good on his part.

I’m waiting for an opinion from the Chicago orthopod also … sent a note asking her to call me at her convenience. I realize this post is fairly general, but I'll post more specifics after we make some decisions.

je

Rough few days ....

Things have not gone so well the past several days, as there are complications that have developed related to healing. It is hard to explain at the moment as I'm not sure on all the details as to what is happening with the incision. I do know that it is not a good situation. We may need to return to San Antonio in the next 2-3 weeks. The TX surgeon has been very helpful with responding to e-mails this week, but it is a hard with the distance ... no driving to his office for him to see it. The Texas doctor did say today that he will see this through and he very much desires to continue to help ... that was comforting.

As with any surgery if the area does not heal, nothing else matters. I've always said that it is about 50% surgeon skill and 50% healing ability ... it takes both for it to be a success.

I'm in more pain with the foot now than I've been in the past four months, so pray for relief, wisdom, and acceptance that we still have a long road ahead. Just when you think things are coming to the end or close, it doesn't always turn out that way. It is all in God's hands, but clearly where I thought we were headed with this looks like His path is different. It will all work out, but more strength and endurance will be needed.

Probably will see the STL orthopod on Monday & get his advice. Will share more when I figure out the next step ... hope you are enjoying the sunshine this weekend!

je

Mixed day ....

Today was a "mixed" appointment at the STL surgon's office. The good news is that I got the stitches out. It is going to be another three weeks before we really know if we were successful w/the Texas surgery. The areas that are black/blue he said are "somewhat concerning," because if the scab falls off and leaves an open wound underneath, then we are back to square one. It may seal underneath, but the verdict is still out on this. I took a digital pic today, but it is still a bit graphic ... too much to post on the blog yet. I can walk on it and get the area wet, but no exercise for three weeks ... more waiting.

The bummer news is that as it is now I am still not going to be able to wear a shoe, because of the lack of forefoot motion that I've never regained. I've anticipated this for a long time, so this wasn't totally unforeseen. It doesn't have anything to do w/the most recent surgery. Several tendons could be released on the forefoot area to potentially solve the problem, but this would involve opening the exact area that we are trying to get closed. Obviously, it is a bit disheartening to think that after all this, I still won't be able to flex enough to wear a shoe. It doesn't sound like a huge deal, but it is a BIG problem. All things can change, but from a medical standpoint this is something (in my case) that can't be improved with additional exercise or pt. I'll have to address the question eventually whether or not it is beneficial to operate again or if wearing one shoe will be forever. I don't know all the specifics and options on this yet - too soon for that yet. I'll likely go to Chicago early May for another opinion.

I'll probably go back to my house sometime this weekend .... sent an e-mail to Chicago today and am hoping for a response soon. Looking forward to a shower tonight!

je