Boot Weekend ....

BIG NEWS! No, not engaged – keep breathing (but you can start praying about it). This weekend was a big “milestone” in the life of my foot …. I got my foot into a boot ... yippee!! I am so, so, so excited, as I thought this day would never happen. It took some hunting to find one that zipped all the way down and had a lower heel, but DSW & Macy’s came through. I was so elated that I bought one in black and one in brown. I figured that surviving all those casts, medical boots, & hospital stays merited two pairs!

As I was checking out I was almost in tears, from happiness, & the sales gal was so confused .... I think she thought that I was upset that I didn’t find something that I wanted, but it was quite the opposite. The heel is almost 1 1/4", so it will be good for me to try and stretch the toes some. The big toe (it is fused) kinda fights it, but it will hopefully adjust. I have been somewhat hesitant to try anything but a flat shoe, so this should help some because I want to wear the boots. My pt guy wants me to bring one pair to pt tomorrow … don’t think he believes me that I got my piggies to bend.

I wore the black pair to church and out today and lasted about five hours, which is longer than I thought I'd be able to do at the beginning. The boots are definitely the most confined shoe wear that I've tried, but I am so excited that I could get the foot to lay somewhat normal. Think of how long we’ve waited for the hope of wearing a shoe/boot and now the wait is over ….. long wait, but it was worth every penny in medical travel for more opinions, consults, tests, treatment, etc. I will have to send pics to a few doctors and the medical staff in San Antonio … sent an e-mail to the Chicago dr. tonight. She wrote back and said, “Yippeeeeeeeeeee! I am psyched for you, Jen. No woman can last more than a few hours in cute boots\shoes so congrats. Hope you are enjoying regular life. Regards for a good week as well.” Dr. P

Thanksgiving was extra special this year, as we have a lot to be thankful for. I’ve enjoyed being at my house (as opposed to years past) and decorating for the holidays over the long weekend. Pt is on Mon/Wed this week and kiddos at JA on Tues.-Friday. Among other things, we are working really hard in pt on my ability to scrunch up a towel w/my toes … the toes try, but we are not there yet. However, I believe I can live w/out this skill, if it never happens. Keep praying for reduced swelling, stamina to increase, and for my grateful heart to be used to help others in the upcoming year.

Jenny

Healing Well .....

All continues to heal well with the foot. On Thursday, I walked 5 ½ miles at work and I did 4 ½ miles on Friday. I resorted to tennis shoes at the end of the week, but at least I had matching shoes on and could wear them all day. I could feel them getting tighter every few hrs., but I toughed it out. I was pretty tired both nights and the foot was achy, but nothing that you’d classify as “pain.”

Toward the end of the week I sent an e-mail to Dr. P in Chicago and updated her as to what has happened in the past two months. I attached a few pics and mentioned that overall things were going well. I told her that I’d tried on a pair of fun boots at Macy’s, but I could not do them yet (no biggie). She e-mailed back and thought my foot looked GREAT! She congratulated me on my “flat foot,” which is cause for a yippee, high-five, and hot fudge sundae session! She said that she was looking for a comfy/not-so-pricy pair of boots as well, so we’d keep each other posted as to whom found them first. It was very fun to hear back from her and to know that she appreciated the update.

I have pt on Monday and Wednesday of this week and kiddos at JA on Monday and Tuesday. I was going to try a light session at the gym this weekend, but I didn’t make it …. will try the gym sometime this week.

A year ago last week was the first tendon lengthening surgery in Dallas w/Dr. C …. that was our last ditch effort, after the gait test, to try and get the toes to lay flat. Although we had to lengthen more in a second surgery, it was one of the best medical decisions we made. I’m so thankful for strong physicians that have stuck with such a challenging medical situation. Lots to be thankful for this week!

Love & hugs,
jenny

Pt Session Update ....

Pt went well this afternoon. It was good to re-connect with my therapist as it had been 8/29, since I was there last. I have been so fortunate to be able to continue to work with the same person for the last three years. He thought my walking looked really good still & I would agree.

All the things that I suspected need work do need work, but I had not lost as much ROM as I had anticipated. We are going to do 2 sessions per week for the next three weeks and then taper off to one session a week for the last 2-3 weeks. Then, perhaps I'll be DONE!!!! Tomorrow my therapist is having lunch w/the doctor that did surgeries #2-5, so I said to give him the update and tell him that we almost good-to-go!


Funny thing is that long ago I thought surgery dr. #2-5 was the greatest dr. ever and that I'd never find anyone better. I was so bummed when he told me that he couldn't help any further ... and since then I've been blessed with other marvelous physicians.


Increasing stamina, reducing swelling, increasing ROM, trying a shoe with a small heel, and helping it to just feel more normal are the big goals. We are going to avoid any manual massage over the incision area, because we both feel like the risk is higher than the benefit (at least now).


Re: Biopsy .... I left a msg. for Dr. B's nurse yesterday and she called me back today and left me a phone message. She said that the report from when I saw Dr. B four weeks ago was final and all results came back negative. Now four weeks ago, Dr. B said that it would be another two weeks before he had the final report, so I am not sure if his nurse has the right information - it probably is still negative, but when I pressed her on it today, she said that what he told me four weeks ago was the final report. I could pay a $50 co-pay and go in & discuss it w/him, but I'm thinking it likely is not worth it -- at this point it appears to be staying closed (big blessing) and that is all that is important.

My hip was very painful this morning .... am hoping it is weather related. I need a "surgery break" for the next 6-7 months, before we do the hip over the summer. Long day today, so need to get organized for work tomorrow. Big group with 135 squirmy kiddos that have not had recess all week!

Thanks for your prayers!

je

Pt starts soon .....

Post #376 ...

I am doing okay with the foot … not a lot of change. The skin is still healing, but most looks healed and nothing is open. No word on the biopsy report yet, but I am supposed to talk with Dr. B’s nurse tomorrow. I am assuming that “no news is good news.” The report was probably filed in my chart weeks ago & no one ever keeps track of patients that are waiting for test results. It was a busy weekend with leaf raking, Trivia night at JA, errands, and went to the Michael Card concert last night.

My first pt appt. is on Wednesday afternoon after work. It will be interesting to see how much ROM I’ve lost …. anticipate some, but hopefully there won’t be a huge loss. I am very ready to get the swelling situation under control – tired of carrying around multiple pairs of shoes.

On Saturday afternoon I went to get my hair done (color ordeal). I almost cancelled the appt., because I had so much that I needed to get done on Saturday. I sat next to a lady that was complaining about upcoming hip replacement surgery and how she was “Nervous Nellie” about the situation. In the midst of talking to her, I realized that she chose the same hip surgeon that I have, so we chatted for 45 min. about hip surgery …. she got WAY more information than she probably ever intended on hearing! She was shocked that I was so casual and cool about it, but after you’ve been through 19 surgeries for a foot, the hip is nothing big!

I’ve not used the scooter at work for the past week now & am not taking any medication for pain, so hopefully we are on the upswing! Will update more after the Wed. pt appt. ……..

je

Thankful Heart Tonight .....

Good News! Hip, Hip, Hooray! The dermo. appt. today was super quick (in and out in 30 min.), because the cream is working! She thought that I should just keep doing what I'm doing for another week and we should be DONE with skin/wound care. Above are a few pics from today ... they would be more impressive if you saw the "before" pics too, but you can use your imagination. She said that there is no need to do the unna boot, since this is working.

Her feeling is that I'm likely allergic to tape adhesive that I've been using forever with bandages. She told me about something else that I could order via Internet that keeps bandages in place without tape (sticky, mesh type stuff). Dr. M thought the foot today looked like a new foot from 7 days ago - amazing difference! She told her hubby last week that I had been in to see her as a patient and he said that I was the youngest person he had ever done a hip replacement on ....... in the grand scheme of things, that seems like a little surgery now. Waiting for a call back on the biopsy report, but I'm thinking it is still going to be negative .... I think they would have called if it revealed something substantial. At this point, negative would be nice.

Thankful for the good report! (Can't think of the last time I typed about good news!)

je

Dermo Follow-Up Appt. tomorrow .....

Tomorrow afternoon is my follow-up appt. at the dermatologist’s office. I THINK the Rx cream may be working! It is somewhat hard to tell totally, but the foot looks much better than last week. I am really hoping that we don’t have to do the unna boot routine. The more I read about it last week, the more I recalled why we didn’t chose to try it over a year ago (it had been suggested by previous doctors). It is a major ordeal and not as simple as it may sound. I’ve had this extensive routine for the past week w/the cream, bandaging, keeping it dry, applying cream mid-day and tracking progress. I was out of town all last weekend and had the biggest bag of wound care supplies.

I am having issues with swelling (not new), but it is lingering on much longer than normal. Over the weekend the toenail on my pinky toe came totally off, because there had been so much swelling and my little toe was rubbing continually on the inside of the shoe. It will go down eventually, but the swelling makes wearing a shoe hard. Today I felt like I needed to change shoes mid-day, but then when I went to switch to a larger size a size up was too big ….. it is never easy. Today was also the first day that I did not use the scooter at work in probably the past three months … it was ok, but I will sleep well tonight.

I have not heard back from Dr. B’s office with the final biopsy results, so I will call them tomorrow. Last Friday was the 6 week post-op mark, so he should have the final report. Although tomorrow is his surgery day, so it will be hard to speak with him via phone.

I am scheduled to resume pt next Wednesday (probably 1-2 times/week). I am guessing that I don’t need a lot, but I want to make sure that we are not losing ROM and the pt will aid in swelling reduction eventually.

Thanks for your continued prayers!
je

Appointment Update .....

The dermo. appt. this afternoon was okay. I waited almost 1 ½ hrs. to see her. Wash U always operates with a patient seeing a PA first and then he/she goes and talks to the dr. and then the MD spends 5-8 minutes with you. It is not my favorite means of conducting an appt., but that is just how they nearly all do it. You never know what the PA is or is not conveying to the physician. It is like a cattle heard going in and out of the office door.

She agreed that the skin is a mess. (I had a big bleeding incident in the car on the way to see her, so redness was at its peak). Like everyone else, she said that the skin “should” heal and remain closed …. there is nothing that you can say to make them think otherwise on the first appointment. It may or may not be an allergic reaction – she said we’ll never really know. Her thoughts were that the skin is so incredibly thin that it breaks down with very little pressure (towel drying, clothing touching it, sock, shoe touching it, etc.) and then it struggles to heal itself. She thought I was itching it while sleeping …. if so I have no recollection of it!

She first suggested this treatment called an unna boot. Basically it is cream medication that is put all over the area and then the entire foot is tightly wrapped in this cast like material and it stays completely covered for up to 6 weeks. It is checked and re-wrapped weekly, can’t drive with it on and would involve weekly office visits ($50 co-pay each visit) for 6-8 weeks. The cast material is supposed to help w/any vascular/healing issues. Not sure what you wear for shoe wear, but a normal shoe would not work. She wanted to put it on today, but that would mean that I’d need to come back on Fri. for a 72 hr. re-check & I am out of town on Friday, so we temporarily held on trying that approach.

I had brought a list of 14 creams that we had already tried. I asked if there was any other cream. She suggested another cream corticosteroid Rx, so we’re going to use that for 1 week and I’m supposed to see her again next Wednesday.

Everyone has a different opinion on this, because another dr. had previously told me that yes the skin is thin on the top of my foot, but not so thin that it should be breaking open & bleeding. I think she thought I had let this problem go on for too long, but we’ve been trying to solve it!

We’ll see what happens I guess ….. She wasn’t in the room more than 5-8 minutes max – it was really quick. I liked her, but it was hurried. (Her husband has a private orthopedic practice, so when I see him it is not associated w/Wash U). My STL orthopod did write an Rx for more pt visits today, without seeing me, so that was good – won’t start this immediately.

Need to make slime base for kiddos working at Monsanto – gotta scoot. Thanks for praying today … will keep you updated!

je

Dermatology appointment .....

Post #372 ....

I was going to wait until tomorrow to post but just so Laura has a new entry to comment on & so no one thinks she is psycho (although your suggestion over the weekend was pretty much what happened today), I’m doing it tonight. :)

I am hanging in there and am trying to make the best of the situation. The Friday appt. was a bit of a shocker, as I didn’t dream of going to another physician. I was supposed to have Fri. afternoon off as a vacation day, but I did go back to work …. it was better to stay busy. There will be better days for an afternoon off at some point. I stopped by the medical supply place on Friday and bought my third package of gauze squares, so now I have used over 400 gauze pads.

The weekend was okay and part of me really wanted to not do anything further, but I know that is not realistic or healthy. On Saturday afternoon, mom & I went to Shriner’s hospital to visit a kiddo from church that had the same major hip surgery that I had at age five. We brought Halloween treats and attempted to give her parents some practical advice about what is ahead. I was happy that it wasn’t me in the body cast & gave her all my anti-itch cast tips. It was good to be able to help someone else. Double hip dislocation is not a fun thing.

Regarding scheduling the appt. w/the dermatologist ….. God works in mysterious ways! I received a call this morning from the receptionist at the dermatologist’s office and she told me that Nov. 25th was the first available appointment (this dr. only sees patients one day a week). I gasped on the phone and then she went onto say that I could really see any doctor in the practice and others had openings much sooner …. exactly what I needed/wanted to hear.

I already knew that there was another dr., in the same Wash U practice, that happens to be the wife of my hip surgeon (whom I really like). I thought long ago that I should see Dr. Martin’s wife at some point. I quickly asked about her availability and she had an opening on Wednesday of this week (2:30pm) …… I took that appt. & if she can’t figure it out, I can always see the head of the dermo. dept., but I didn’t think it was wise to wait 3 ½ weeks to see someone. I wanted to see this physician all along, but I didn’t think it would ever happen (changing doctors w/in the same practice, is tough w/this group). I firmly believe this is a “God thing” … no question about it ….. and I don’t have students this Wednesday, so I don’t have to juggle around coordinating coverage for a visit day.

My hip dr. is fabulous, so I am praying that his wife will be the same! He was the first doctor that we met when we moved to St. Louis and then I was his first patient to have a hip replacement at age 24, so we’ve always had a strong dr./patient relationship. She will laugh when she sees her hubby’s name listed first on my surgical history handout sheet.

All this to say that God continues to be faithful …. even when we feel like everything is falling apart. Perhaps Dr. Martin will know something that the other lady wouldn’t have known ….. it wasn’t a coincidence that I knew she was part of the same office. She doesn’t see patients downtown (only at West Co.), so that is a bonus! Pray that we make some progress on Wednesday afternoon. I am not totally convinced that it is a skin issue that we’ve missed, but we’ll see. If she doesn’t feel it is a dermo issue, then I need to hear that as well & then it is back to the plastic specialty.

Thankful for the quick Wednesday appt. and for the semi-relationship that already exists in knowing this is a reputable doctor ….. God is good all the time. Thank you for continuing to pray, share encouragement, provide insight and support. Today I felt like it was really helping and making a difference, so keep it up!

Hugs –
Jenny