Straight Toes-R-Us ....

I was off work today and it was good to rest at home. I am not walking on the foot yet, but the initial post-op pain is slowly decreasing. I have been sleeping through the night fairly well and wasn't tired enough this afternoon to take a nap. I am taking pain medication, but not the "strong stuff" that I came home from the hospital with last weekend. The toes are pretty sore, but that is to be expected. I imagine that they were maneuvered more than I know during surgery.

I was able to take the bandages off of the foot this morning and look at the incision that has difficulty healing and the toe work. The toes do look straight and I can see them now. They were so low before, that I couldn't see the toenail. Thankfully, the foot and toes were not nearly as swollen and/or black-blue as I had anticipated. We started the collagen today in between the stitches on the incision. The medicine is cool and actually felt pretty good. I am still concerned about whether the procedure we've just done will eliminate the pain - enough to allow me to function and walk. Keep praying that I won't worry about this all month .... I know worrying isn't the answer and doesn't help. The waiting during the "healing phase" is much harder than the surgery itself!

I made post-op follow up appointments today, too. The stitches come out on May 11th (St. Louis doctor) and then the pins and follow-up appointment happen in Chicago on May 25th. I am already looking forward to the Chicago appointment and seeing if the positioning will help improve the walking, as we are hoping.

My insurance company has been sending out a visiting nurse to check & give advice on my incision situation, and I learned late last week that my insurance company won't pay for this service as long as I am working & going to outpatient physical therapy. If I wasn't working, they'd pay for it! Go figure - you think you are doing the right thing by trying to continue to work .... you can't win with insurance companies. As long as the incision stays closed after we remove the stitches next week, this shouldn't be an issue.

We have a huge competition event tomorrow (Tues.) at work with school teams from 14 schools, so I am returning to work. Don't panic - I will sit all day! Believe me, I don't feel well enough to be walking around the building. I still have the scooter through the month of May.

Hope you are enjoying the St. Louis sunshine .... thanks for your continued prayers!

Home from Chicago ....

Overall things went well in Chicago on Friday with the toe surgery. The surgery started on time and was about 1 1/2 hours in length. The surgeon pinned the 2nd and 3rd toes and needed to do some bone removal on both toes. She cut the flexor tendon also and tried to improve the positon of toe 4, but she couldn't get a pin to stay in it. There are two external pins in the toes now. The pins will remain in for four weeks and then will be removed.

The incision opening was looking so good on Wednesday and then on Thursday it went downhill and looked exactly like where we started - totally filled again with yellow junk. It was still looking bad on Friday, so the surgeon opened it up again (during surgery) - drained it, cleaned it out and re-stitched (some different way), so are starting over now trying to get it to close.

No physical therapy for four weeks. The Chicago doctor wants to remove the pins herself and see how the foot reacts, so I am to scheduled to see her on May 25th. Her thinking is to start pt again as soon as the pins are removed. She continues to be concerned that the foots looks one way when I am sitting and then looks differently with weight bearing.

I can walk on my heel area, but haven't yet. I think the incision needs several days with no weight . . . to help the healing process along. This has definitely been more painful than anyone anticipated. We arrived home safely on Saturday evening and it was great to get back to my own bed. I will rest with the foot elevated for most of Sunday and Monday.

Thanks for your continued prayers!

Surgery details ...

Good Morning ....

Surgery is scheduled for 1:10 today (Friday). We need to be at the hospital at 11:40 this morning, so we are at the hotel this morning - leisurely getting ready. The weather is about 70 degrees, windy, rainy and gloomy outside. We are not missing anything outside. It will likely be early evening before we get back to the hotel today.

We arrived about 11:30 on Thurdsay in Chicago, had lunch out and relaxed yesterday afternoon. My incision seems to be getting worse instead of better, so I am anxious for the surgeon to see it as well. If we need to place a drain or vacume under the skin, it would be best to that procedure today as well.

Will have my mom update the blog either tonight or Saturday morning. I am at peace and doing well emotionally. Have a great day!

Jenny

Plans for Friday in Chicago ....

We are leaving late afternoon on Wednesday and will spend the night in central Illinois with relatives. We will leave for Glenview, IL Thursday morning (Chicago suburb). Surgery is still scheduled for sometime mid-morning on Friday - no time set yet, but will find out sometime Thursday morning. The goal of the surgery continues to correct the positioning issue with the four small toes. The surgery is outpatient and I'll rest Friday afternoon and evening at the hotel.

Depending on how I feel on Saturday, this will determine whether we drive the entire way home to St. Louis or stop in central Illinois. Pain has continued throughout this week and I am ready to get on with it. I will meet with the surgeon Friday morning early, before surgery. I've been blessed in the past with little issues with anesthetic, but early on this was a big problem - pray that the anesthetic person I work with will be aggressive and proactive with nausea issues. We will likely to a nerve block for the foot and spinal anesthetic. Pray also for mom, while she waits alone during the surgery. This is definitely not ideal, but she has done it before.

God is good and He has it all under control .... no worries here. I'll have my mom update the blog on Saturday or I'll do it as soon as we arrive home. (Sometimes Internet access at the hotel is not the easiest.)

Hope you are enjoying sunshine and warmer temperatures!

Love,
Jenny

Straight toes soon ...

The week has ended positively, despite a challenging few days with pain and big decisions. Thank you for praying for my situation, especially this week. Several praises and updates ….

The incision wound is healing fantastically! Amazing enough, the drainage has pretty much stopped and we started using the collagen strips today on the wound. This promotes new cell growth and the cut begins to “fill in” with new, pink tissue. I started that collagen strips about 10:30 this morning and by tonight can already see a substantial difference. In several more days, the wound should be entirely closed. There has been no infection . . . it has just taken three weeks to stop draining. We have made HUGE progress on this in one week – yeah!

On Wednesday I received an e-mail from the Chicago surgeon asking me several questions and saying that she wanted me to be prepared to answer them during our phone conversation on Friday. I thoroughly thought through her questions on Wednesday and typed out my responses on Thursday evening. At 8:45pm on Thursday, my surgeon called my cell phone. She knew she would be busy with several surgeries on Friday and wanted to have adequate time to talk to me. I was thrilled because talking during the evening was much easier for me as well. I was pleased that she took time to call, listen, & offered insight to what I was sharing. We talked for almost thirty minutes on the phone & discussed the wound, physical therapy, pain, how I was doing emotionally, walking, and wearing a shoe in the future. It was a good conversation and we talked about more on the phone than at the last office visit.

She stated repeatedly how much she cared, wanted to make sure the foot was right for me, and that my “case” was a huge deal to her. She is committed to seeing it through until the end and told me that she has spent considerable time thinking through the next best step. She is concerned about my hip also and realizes that my gait pattern affects the hip. She fully understands that my pain level and inability to walk/stand are at a point that this has to be improved. She believes that the severe pain I am having now is due to me only being able to walk on the back half of the foot. God didn’t make us to walk on our heels alone.

After much discussion, we agreed that the next best (and hopefully final) step is to proceed with the toe positioning surgery to straighten the toes. If the toes are straight (not curled as they are now), this should also bring the foot down somewhat, allow me to put weight on the front half of the foot, and walk in a closer to normal pattern. The surgery is outpatient and will be done at the same hospital in Glenview, IL on Friday, April 27th (probably mid-morning surgery time). We will arrive Thursday in the Chicago area and will return home on Saturday. There is no cast involved, and I’ll be able to put weight on the foot after several days. The flexor tendons will be cut to allow the toes to be pulled up & they will be secured w/several external pins, which will remain in place for 4 weeks. Physical therapy will follow for the first half of the summer.

I feel blessed to have such a committed doctor who genuinely and sincerely wants to see me walk and wear a shoe again. She is one of my biggest cheerleaders and looks forward to the day pain free walking happens for me. I realize we’ve said before that previous surgeries will be the last, but she feels strongly that this should be the end. This procedure is rather minimal, compared to what we have done in the past. I strongly felt that our phone conversation was from her heart.

Pray for the following ….
- Finalizing work details & responsibilities, before I leave.
- Safe travels this week (Wed.-Saturday).
- Continued peace about the decision we’ve made.
- Incision – that final healing will continue to happen.
- Pain – that this will cease to exist with straight toes & the
positioning of the foot will come down.

Many thanks again for your prayers …. they were felt this week like never before. Enjoy the sunshine and warmer weather this weekend. Take a walk for me!

Jenny

Tuesday foot status ...

Quick update ....

I met with an anesthesiologist today about a possible therapeutic epidural injection. I learned that I am not a candidate for this type of pain relief and it is not effective for foot pain. It is normally done to relieve pain for a specific nerve issue and this is not my situation. An epidural for foot nerves would only work for 2-6 hours - it is a very short term solution. This doctor suggested increasing the dosage of oral pain medication to get me through physical therapy. I am thankful for a clear and direct answer on this.

The physical therapy sessions have been a huge challenge this week and have increased pain significantly. The constant pain and inability to walk are preventing me from being able to work effectively and the pain is all I am able to concentrate on during the day (not how it should be). I am taking more narcotic medication than I would like and it is not as effective as it should be.

I am supposed to talk with the Chicago surgeon via phone on Friday. I suspect she wants to wait a month before doing the toe surgery, but I don't feel like I can wait due to the increasingly difficult pain situation. I am close to needing to take a "leave of absence" from work, and don't want this to happen.

Pray that the Friday phone call will definitely happen, that the surgeon will be open to fixing the toes sooner than later and that I am able to make it through the week with the pain situation. I am very thankful that she is willing to talk to me on the phone.

je

Met with wound nurse ...

We made some progress on Saturday with the incision wound that is not healing. I had to work all day at JA (Girl Scout Day) on Saturday, but a visiting home nurse came to see me at work. She was fantastic! She fully agreed with the recommendation from the Chicago surgeon and said that the ointment that I had started using & then was told to stop, was the correct and fastest route to try to get the incision to heal. She gave me bandages, Saline solution, and told me the steps to take to remove all the old/dead cells within the next week. At the end of next week, we will start with collagen strips and this should promote new skin growth over the incision. Another visiting nurse is supposed to see me three times this coming week, to monitor the situation. It will likely take 3-4 weeks to get this to heal.

My Chicago surgeon called my physical therapist on Friday morning and they talked about what movement should be possible. They are on the "same page," so that is positive news. I will meet with the physical therapist three times a week for about two hours each session. Thankfully, his office is right next door to my office.

I am in a phenomenal amount of pain, since I am only able to walk on the back half my foot. I feel like I am taking narcotic pain medicine like water. The physical therapy causes more pain and walking for about thirty minutes is all I am able to tolerate - this time is up before you even get to work!

The Chicago surgeon e-mailed me back stating that she spoke with my physical therapist, but she did not say whether or not she could do the toe surgery the first week in May. I e-mailed her again and am waiting for a response. I really would like her to do this surgery, so keep praying that this works out in a timely manner. If I do not do this surgery by the beginning of May, I have to wait until July due to work items .... there is no way I can tolerate the pain until July.

Pray for wisdom & direction as I meet with an anesthetic doctor on Tuesday afternoon about the therapeutic epidural injection. I need to make a decision on this and have very mixed feelings about it. I am very hesitant, as I do not want something to get messed up with the spine! It is expensive, doesn't always work and the positioning on this is critical - pray that it will be obvious if this would be beneficial. Not everyone is a candidate for this, so maybe it will work itself out on its own.

Remaining hopeful ....
Jenny

Wednesday surgeon phone call . . .

I met with my St. Louis surgeon today and the visit was somewhat productive. I was able to see a wound specialist, while at his office. She gave me a prescription for a different ointment to attempt to heal the wound. It is something that pharmacies don't normally carry and is quite expensive, so I am going to check on Thursday to see if there is an alternative.

I am still working on finding a suitable anesthetic person for the spinal epidural injection. Nothing has been able to get scheduled on this yet.

The best thing that happened today was at 4:40, I called the Chicago surgeon and left a message for her to call me back. At 5:45 she returned my phone call .... yeah! She could tell that I was stressed and upset with all the coordination of details. We discussed a lot in a short amount of time and she is going to be very involved in the physical therapy care and plan of action (this has never happened before & should have). She offered to do the follow-up toe surgery in Chicago, if I was more comfortable with this option (yes!). She encouraged me to remain strong and continue to hang in there. She agreed that social and work issues related to this are important aspects, that need to continue to be addressed. I e-mailed her tonight and asked if we could do the toe surgery the first week in May. Pray that she agrees to this & she isn't on vacation this week &/or can work me into her schedule. If this works, it would allow me a short break for the next two weeks before beginning with additional surgery. Recovery would be 4 weeks with toe pins, which would basically be all of May. No cast, but walking would be limited to the heel area only.

I have a work conference during the first three days in June and then several hundred kiddos for summer camp (all of June), so the bottom line is that I have to be functioning much better and walking by June.

Physical therapy is staring at 4:00 this Friday. I will work with the same therapist in Chesterfield (next door to my office), that I have worked with in the past. Therapy sessions will be three times a week, until we do the toe-surgery and then will likely continue after that surgery.

If I can have a short break from surgery now and hopefully have all the surgery done before summer starts, I will feel much better about all of this. Praising and thanking Him that I was able to speak directly to the Chicago doctor yet today ... keep praying!

Hope .....

Greetings! We are home from chilly Chicago. Overall, the appointment on Monday went well. The surgeon spent time with us, was organized, and answered all of our questions. It was good to see her since the February surgery. She feels that there is still hope for the foot, and the prosthetic option is not the best choice until we try correcting a positioning issue with the toes. (The four small toes are curved now, and should be straight.) If the toes are straight, then presumably the foot should lay flat/come down & walking should be improved. If this thinking and medical advice is correct, then we will have saved the foot.

For the wound healing, she prescribed an ointment to stop the draining. I need to go to a Wound Center for collagen strips to be applied for regrowth of the skin. The smaller toes need to be “released” to straighten them , as soon as possible – next week probably. A therapeutic epidural (spinal injection) will help with pain control, so that physical therapy can begin when the toes are fixed. We need to meet with an anesthesiologist for this, hopefully through the doctor here. PT will be started to help with foot movement and walking. We have a lot of details to coordinate rather soon.

Although the toe surgery is supposed to be minor, I am not excited about the idea of operating a tenth time. It is becoming increasingly harder and more exhausting to make all of this function and happen with my work schedule. It is an answer to prayer that we are not talking about removing the foot, but there is also a significant amount of caution because of what we have been through in the past. Obviously we have to try, but emotionally it all continues to be a struggle. The inability to walk and ongoing pain are clearly taking a tole on all aspects of life.

Many thanks for your prayers and support .....

Jenny

Prayer Requets for Monday ....

As we are preparing for our Monday appointment/meeting with the surgeon pray about these things specifically:
- Safe travels to and from Chicago
- Time - Pray that the surgeon will take the necessary time to answer all of our questions.

- Answers - We need to hear more than "walk on it" more or try therapy. Not viable options.

- Grace - To deal with decisions that are ahead in future days.

- Wisdom - To be able to quickly make a decision, due to pain increasing as the days progress.

- Agreement - Chicago appt. is Monday & STL surgeon appt. is Wednesday .... pray that they
will agree on the next best course of treatment.

- Joy -We will somehow find joy in each new day, amidst feelings of frustration.

- Expectations - We'll manage our expectations and won't leave feeling disappointed.

Our three goals over the past three years have been the following:
1. Pain free (or generally)
2. Ability to walk/stand and participate in life activities - drive, work, live on my own, etc.
3. Wear a shoe

We are not anywhere close to having accomplished any of these things. There has been negative change in the foot over the past 6 weeks (since cast came off), but nothing new in a positive nature.

The bone stimulator saga continues! It is a long and complicated story, but my insurance company told my STL surgeon's office last Friday that it had been approved and they would cover it 100%. So on Monday of this week, I met with the medical representative and got the $5K bone stimulator. On Tuesday, my insurance company said they "misquoted" and it was not going to be covered at all ..... hmmmm! Because I had already used it, it looks like the medical company may "eat the cost" and just give it to me. I will know more on Friday, but for now I am using it. It simply helps the bones become stronger inside, but doesn't do anything for pain or the positioning deformity. Leave to the insurance company to not live up to their original coverage promise. I may end up getting to keep it after all, but it will definitely not be because of the normal course of events.

God's grace continues to provide strength and patience for us in a time of need. We delight in His faithfulness and knowledge that His plan is perfect. Another new chapter may be ahead, but we will get through it.

Blessings for a special Easter ....
Jenny

Chicago visit happening soon .....

I am anxiously looking forward to my appointment with the Chicago surgeon next Monday. I have communicated several times via e-mail with the doctor, so she knows when we are coming and the items we'd like to discuss. My mom sent her an e-mail last Sunday expressing her concerns from the viewpoint of a mother, and our decision to bring this long ordeal to a close. In May it will be three years since all of this started and we are at a crossroads - there has to be an end to all of this soon (for lots of reasons). We cannot be where we are today even 3-6 weeks from now .... being able to only walk/stand for 30 minutes a day is exhausting. The next two months at work are the busiest time of the year for me, so timing once again is not ideal. My incision is not closed, as I thought it was before. It continues to drain and is a partially open wound.

Chicago Doctor wrote back the following today....
I am empathic and am sincerely disturbed by events happening. I am anxious to see Jenny and her foot personally next week. I too wish only the best for Jenny and am frustrated by what should be the "looking up and feeling better" period for Jenny. Happy Easter to all ... see you Monday.

A Monday morning appointment is not ideal, because the office tends to be very busy and hectic after the weekend. Pray that the surgeon will take enough time with us and we will successfully have all of our questions answered. We need to talk about all of our options in the short time we are together. I am meeting with my St. Louis doctor next Wednesday (April 11th).

Thankfully God has it all under control and no matter how it ends, it will be part of His unique and perfect plan. Pray for safe travels on Sunday and Monday, ears to be open to what the surgeon suggests, and a willingness on her part to discuss a prosthetic foot if this is our next best step in the process. Hard decisions or not, it is time to move on .... we need direction and much wisdom to make an appropriate medical decision. Take heart in the fact that God has plans for each of us, which involve much hope and a future .... all will work out in His time.

Blessings for a special Easter!
Jenny
(P.S. We will be home Monday evening .... I will update the blog after our Monday appt.)