Wisdom needed ....

Pray for wisdom and discernment in decision making!

At our visit with the plastic surgeon last week in Chicago, he recommended that I consult with two other surgeons.

1. Neurosurgeon & plastic surgeon at Johns Hopkins University (Baltimore)
2. Plastic and nerve surgeon w/Barnes with Washington University

I will share more about this later but on Monday, I was able to contact the neurosurgeon in Baltimore (while he was in Greece) and get an appointment scheduled to see him on July 10th. He believes that I need to have two sensory nerves removed or re-routed at the top of my foot, which he feels are causing pain. Doors opened incredibly on Monday and I felt like I needed to proceed with going to see him. I will tell you the entire story later, but details fell into place like they never had before.

On Tuesday, my orthopedic surgeon set up an appointment for me to see another doctor in her office - pain management guy - on Friday, July 6th. He would likely advise either an injection or some medication.

Today I met with the surgeon at Barnes and she had a totally different (conflicting) option from the Baltimore doctor. She did not feel that it was worth trying what he suggested.

Needless to say, I left her office feeling more confused than ever and very frustrated with what I thought was a new, big gleam of hope with the Baltimore doctor. It is very difficult to know what medical advice to trust. Emotionally I am at a point of clinging onto anything that sounds reasonable and will potentially provide pain relief. If I proceed with going to Baltimore, the expense is massive. I would need to pay for everything up front and then file with insurance.

It has been a very long week with camp. I have been exhausted and emotionally drained all week. It is not the best week for me to be making a big decision. I have a call into my orthopedic surgeon & the plastic surgeon that I've been working with in Chicago .... pray that they both call me back on Thursday. Obviously, I'm willing to travel to Baltimore if it is the best way to proceed, although I am struggling to know how best to move forward. Pray that it will be clear and obvious as to short-term treatment.

je

Pain, pain, pain ....

I did not hear back from any doctors on Friday, as for trying to schedule an appointment regarding a nerve issue. I researched more on the Baltimore doctor and I would like to see him as soon as possible. He primarily works out of Baltimore, but he does have offices in Arizona, Vegas, and St. Louis. His receptionist told me that she thought he would be in St. Louis one week in August but I would fly to see him sooner, if I can get an appointment. He is an expert at re-routing nerves that cause pain due to trauma. Pray that the details fall into place for an opening to see him.

I have reached my limit on tolerating pain and the inability to walk. We are not sure if the pain is nerve or bone related, but either way it has definitely reached a climax. Physical therapy on Friday was fine .... am trying to have a positive approach to it, but it is hard with the pain issue. The short-term goal is just to make it through camp this week. Physical therapy will happen Monday, Wednesday and Friday late afternoon.

Tomorrow (Sunday) is my birthday .... I am determined to have all of this end within the next several months. One way or another, we are going to make some substantial improvements in quality of life. Three years is enough and I've never felt so "done" with it all as I have in the past two weeks. Pray that the current doctors are either willing to be more aggressive with pain relief or we quickly find the right doctors to help us.

je

Thursday update ...

We are home from Chicago …. whew – quick trip! All went as planned at the plastic surgeons office and the skin grafting is perfect. He came into the room and started singing “Hallelujah Chorus,” which was comical. (He knew about my Christian background) I don’t need to see him again, unless a new problem develops. Just FYI …. if you ever have an incision that doesn’t close after 4-5 weeks, something is wrong! I waited entirely too long, “hoping” that the incision would close. The plastic surgeon thought that most of my pain is likely coming from a nerve issue, which may/may not be able to be corrected. All of the “nerve tests” that we have done in the past have not revealed any problems, so it has been an ongoing issue of trying to correct something that is undetected.

The plastic surgeon gave me the names of two surgeons that specialize in peripheral nerve surgery. One is a doctor that works mainly out of Baltimore, but he is supposed to be in St. Louis for one week in August. I made several phone calls today, but I’d like to see him the week that he is here – pray that the details for this work out. The second option is to see someone located in St. Louis, but she doesn’t take all patients …. I’m still in the process of checking to see if she will see me for a consultation.

I got back to work this morning only to find a message on my office phone that the orthopedic surgeon in Chicago wanted me to see another doctor (related to pain management) in Chicago this Friday morning. I just got home from Chicago! Not sure why no one called me yesterday on my cell phone, but it didn’t happen. I returned the phone call and they asked if I could return this Monday – not! I tentatively have an appt. to see this person on Friday, July 6th, but I am still exploring whether or not this is worth pursuing. Traveling to Chicago every week is a lot – trying to get doctors to “think ahead” and work with me better on planning appointments has not happened like it should.

I am hoping that the orthopedic surgeon in Chicago will call me to answer some additional questions … we need to talk. The foot pain (likely nerve related) is back in full swing and has been rough this week as I’ve started to walk again. I am trying to not start pain medication that is very addicting, but this may be our only choice in the short term. Physical therapy starts tomorrow afternoon. I am concerned about being able to "push through" with the pain and the sustainability factor of being able to do the needed therapy. It is a lot at the end of the day with work and the pain is always worse as the day progresses. I have a new camp at work that starts next Monday, and I’m feeling the crunch of not having enough “office time” this week.

Better scoot for now …. lots to do before camp next week.

je

Happy Father's Day!

Survived camp at work this week …. Yeah! One week off with no kiddo darlings and then the last weekend in June is our final camp week. I am very thankful for the camp staff that I hired - everyone showed up, no one was sick, all took initiative and helped with even those munchkins rubbed you the wrong way after the first hour of camp. The kids were good about telling me to keep my foot up!

I realized on Thursday that there is a small incision under my second toe (from the April surgery) that I thought was closed and it is still open. It is at the connecting point of the second toe with the foot – bad spot. I am hoping that it closes naturally, as it has been seven weeks since that surgery.

I thought we have fixed the curving toes deformity issue at the end of April, but I am concerned now that the problem as returned. The toes are droopier now than when the pins were removed several weeks ago. The tendon that allows them to droop has been cut (intentionally) so there should be no way or reason for them to return to the incorrect position. I saw my orthopedic surgeon in St. Louis on Friday and he said that if the toes hinder walking, I could have more bone work done to correct this. I am not in favor of doing more bone work on the toes. As long as I cannot shift weight to the front of the foot, there is no point in attempting to fix the toes again. My guess is that it is the same issue with the positioning deformity on the inside of the foot …. the correction is fine during surgery and for a short time after, but then the problem returns. There could easily be an undetected nerve problem happening, but no one knows …. neurologists think it is an orthopedic issue and orthopedic doctors think it may be a nerve issue.

I now own my fashionable blue scooter, because the “rent to own” thing has happened. I’ll keep it as long as it is needed and then will find a new owner for it. There will always be someone that wants to ride instead of walk!

Emotionally there continue to be up and down moments or days ….. I am hoping to get the “clear” to start physical therapy and driving at the end of this coming week. My mom needs a break from all the “care giving,” so perhaps I will be able to return to my house also. Things will slow down for me at work starting in July, so I am looking forward to this as well. We are still planning to head to Chicago on Tuesday evening for a post-op appointment with the plastic surgeon on Wednesday. If all goes well, this may be our last appointment with him. We will return to St. Louis on Wednesday evening.

Hope you have a splendid Father’s Day weekend!

je

Skin grafting photos look good ...

Summer camp is going well .... it is a long day with 80 kids, but thankfully my staff is doing a fantastic job of pitching in and "stepping up to the plate." I am pretty tired at the end of the day! I e-mailed photos of the incision grafting site to the plastic surgeon in Chicago yesterday. He e-mailed back and said that all looks to be healing fine, based on the e-mail picture. The photo of the grafting is not healed enough to post on the web, but I will when the healing process gets further along.

Wednesday is my dad's Birthday, so we'll celebrate as a family. The hospital bills are coming in from the April and May surgeries, so pray that it doesn't become overwhelming. Most people don't have two operations in two months, which adds up quickly. Somehow insurance never pays as much as you'd like ....

Thanks for praying for energy and stamina this week. Only a week left with the crutches, so the end is in sight. I am looking forward to spending next weekend at my house and getting back to my bed - hopefully!

je

10 days and counting .....

I have been able to leave the bandages off the skin grafting area, since I have been at home this weekend. No one told me that it needs to get air, but somehow I think the air helps it to heal. Both wounds are drying out and are improving in sight a little bit each day. The mesh material that was covering the area where the skin was taken from all came off (naturally) yesterday, which is a tiny bit of progress. The post-op pain is entirely gone. The plastic surgeon requested that I e-mail him pictures of the foot this Wednesday, so he can track the progress on the "off" week that I don't see him. I was not prepared for the graft site to look like an oval hole (not really a hole, but looks this way) and instead thought I would see the skin come together in a seamless fashion. It is the least of my concerns at this point, just doesn't look like anything I anticipated. The wound is closed and that was the goal .... since it is on the inside section of the foot, you can't see it much from the top view of the foot.

With nice weather outside, it is definitely harder and harder to continue to use the crutches and keep the foot up. I am looking forward to driving and possibly returning home at the end of June. It has been December, since I have driven! I am thankful for wonderful neighbors that have been watering my lawn, flowers, and are keeping an eye on my house. My first physical therapy appointment is at 1:00 on June 22nd. The sooner I get through a month of the pt appointments, the sooner we will know where we are at with the positioning and pain issues. I'll work with the same therapist that I've seen for the past year. I put my foot on the floor last night (no weight, don't panic) to see if anything had changed with the position, but it is still the same.

My brother is going to go with us to Chicago for our follow-up post-op appointment on June 20th, so he will be able to help my mom with the driving. We will drive part of the way on the evening of the 19th, as we have in the past.

Let me know if you think of any creative and concise story that I can tell my camper darlings this week, as to why I will need to sit and teach with my leg up. There must be something humorous, without giving them a lot of detail.

Hope you are enjoying the sunshine!

je

Silly putty and new skin ....

The new skin is growing! Our trip to Chicago went smooth and was pretty quick. The plastic surgeon took off the bandages and we were able to see the grafting for the first time. He took a small slice of very thin skin (yes, Laura - cheese slicer method!)from just under the incision area that was not closing. The grafting section is oval shaped and looks like a large oval piece of silly putty. It has a slight dip or indentation in the skin that will always be there, but it is closed. There are tiny clear stitches that are around the new section that will dissolve with time. I cannot see them, but the stitches are there.

There are now two wound sections that need to heal. It looks pretty rough and raw, but it has only been a week. I have cream ointment to put on the grafting once a day to keep it moist. No weight on the foot for another two weeks and it needs to remain elevated 99% of the time - harder than it sounds. It doesn't need to be above the heart, but just up. A strong blood supply needs to get the grafting at all times and this is critical for the next two weeks. I need to return to the plastic surgeon (in Chicago) in two weeks for what will be our final appointment with him, if all continues to go well. I am scheduled to begin physical therapy on Friday, June 22nd. Physical therapy will last for 4 weeks.

I have summer camp at work next week with 80 kids all day. Thankfully, a retired teacher that desires to work called me at 8:30am this morning and wanted to know if I had a use for her skills. Sure! I was concerned about being responsible for managing kids and leading activities all day next week, but now I just need to lead - whew! It will still be a long week, but I'll make it. After June 20th, I will be able to put weight on the foot - 12 days and counting down!

Thanks for your continued prayers. It was a ray of hope to see the skin grafting starting to be successful. I am very thankful that we were able to quickly get in to see the plastic surgeon and we will have fixed the wound in about four weeks. Hopefully, our career in plastic surgery will be over soon. We are looking forward to being home next week and not traveling.

je

Off to Wednesday appt. in Chicago ....

Our first follow-up appointment with the plastic surgeon in Chicago
is tomorrow (in Chicago) at 12:30pm. We will drive back to St. Louis after the appointment. Pray for good traveling weather and that the graft will be healed enough for me to begin to put weight on the foot - and stop using the crutches. Will write after we return from Chicago and learn more about how things are progressing ....

je

Foot up and doing well ....

Saturday was a good day, as I spent it resting/sleeping with my leg elevated. I didn't think I came home from the hospital as tired as I was, but obviously the entire ordeal caught up with me by Saturday. It was a good day to sleep with the rain outside! I did not sleep all that well at the hospital.

The pain has been manageable, as long as I stay on track with the medication timing. There was an area on the top of my bandage (near the ankle) that was much too tight and was making a mark into the skin. We carefully cut this section out of the bandage and that provided relief. I have not seen the stitches yet around the skin graft, but he said they are tiny, tiny stitches that are clear (like fish line) color.

My orthopedic surgeon in Chicago sent me a short e-mail yesterday and told me that she had heard from the plastic surgeon that all went well and she was still cheering for me! Nice to know that those two doctors continue to communicate w/each other.

I will rest today at home and am planning to return to JA on Monday - sitting w/leg up, no kiddos. I have summer camp things that I have to finalize. We will leave Tuesday (early evening) for IL and then will drive the remainder of the way on Wednesday - 12:30pm post-op appointment.

Wishing you a joyous Sunday!
je

Thursday surgery went well ....

Just a quick note to let you know that all went well and as planned with the skin grafting surgery on Thursday at Evanston. What a big hospital … wow. Dr. Howard has been great to work with … we really like him. He ended up taking a small skin graft from the right foot, so we didn’t make an incision somewhere new. It has not been as painful as I anticipated. I need to keep my foot up and elevated for 90% of the time for the next week, to allow blood to get to the new skin area.

He said that there was a ton of scar tissue under the incision, so that is probably why the wound wasn’t healing by itself. He mentioned that skin grafting doesn’t always grow the best over scar tissue, although he thought my tissue looked healthy (no infection). He thought that there was a 95% chance that the new skin would adhere & if it doesn’t he said we’d figure something else out …. overall he was pretty hopeful that it would work. No weight on the foot for the first week, to try and give the graft time to heal.

We are back in St. Louis and will return to see Dr. Howard on Wednesday of next week at Glenbrook Hospital …. He said that he’d tell me how long I need to wait to start pt after we see how things look next week. I had a private room at the hospital, but it is good to be home and rest - much quieter. It is a "wait and see" situation now, as we wait to see if the new skin piece will permanently attach over the wound.

I'm thankful for safe travel, good weather, and smart and caring doctors. My mom stayed with the pastor and his wife that married them 38 years ago. They live in the town next to Evanston and have a beautiful home. She had a great time visiting with them and having breakfast on Friday morning. It was a good break for her and a special time for them to reconnect.

Have a relaxing weekend!

je