Yesterday was a VERY long day. Once we landed in Boston we dropped our bags off at the Devon Nicole House. It is housing for Children's patients who are coming from more than 50 miles and offers and more "homey" and affordable place to stay, especially for extended period of times. Once we dropped off our bags, we headed straight to Children's to start all the appointments. It was a little backwards from the traditional process that they use. I started with my pre-op appointment in the Ortho Department. I met Jill while I was waiting for my appointment. She is sooo sweet! She had follow-up appointments that day and after we were both done had plans to go shopping and out to eat. The wait was not long at all and then it was my turn. To my surprise Dr. Millis and Dr. Novias were not there because they were in NY, so my appointment would be with the PA, Erin, who I had never met. I was a little confused at first because when Dr. Millis and I had communicated via email, I was under the impression that he would be there. I still had questions nonetheless, so Erin did her best to answer my questions for about a half hour. A couple will have to wait for prior to surgery because she was not as familiar with my case, concerns, etc.
Questions I asked were:
How long will the surgery take? Approx. 3 hours
How long am I expected to be In-Patient? 4-5 days is expected
What type of hardware will be used? Blade-plate and screws
When does the hardware come out? Depends on bone healing, so can be as early as 4 months or 8+ months.
When I need my LPAO, can the right femoral osteotomy hardware hardware be removed at the same time? Yes
Will I need a scope in addition to the FO to repair the torn labrum? Possibly. It will depend on how I feel after surgery and if the ostetomy is able to take pressure off the tear. If it can not or the tear is large enough to protrude and catch in the joint then it can be done locally with Dr. Maiers. The last scope my labrum was soft and had already sustained 3 tears. There is a 50/50 chance of needing another scope.
Will I be using a CPM during recovery? It will depend on if Dr. Millis thinks I will benefit from one because of potential scar tissue build-up or stiffness.
What are my nerve & pain precautions? Anesthesiology highly recommends an epidural because of the nerve hypersensitivity and the better ability to control pain, etc. A pain team will be following up with care as well. I will also take Lyrica the morning of my surgery to help prevent flairs as well.
What will be my weight-bearing restrictions? 1/6th till 4 weeks, so about 15-25lbs at most.
Driving? Can not drive till I am able to lift my leg. During surgery the muscle is retracted and "shut-downs" for awhile. So, until it begins firing and some strength returns then it will feasible to drive.
EDS precautions? Left hip and shoulder have been increasingly more unstable. We are going to work on things one at a time, but probably during the first weeks I can work on rehab to strengthen my shoulder which will hopefully help until it can be addressed later on. The left hip will be addressed during some post-ops and will discuss options later. This was harder because I really wanted to talk to Millis about this, but will hopefully have a few minutes prior to surgery to mention my concerns.
Dr. Maiers will be doing my local follow-up so I will see Maiers for wound-care(I always have healing issues and get post-op infections because of my EDS), a follow-up at 1 and 2 months and then will be back at Children's for a 3 month follow-up.
After Ortho I went to PT. PT was super-quick because it was going over proper form with my crutches. She said I am a "Pro." You have to be for as many surgeries as I have had :) Then I was off to Pre-Admitting. This is where they double check your paperwork, do some vitals and pre-op labs, go over the medical history and see an anesthesiologist for a consult. This was not too long. Everything was fairly routine, except the Anesthesiologist wanted an Echo as a baseline because of my EDS. She just wanted to make sure there was not any abnormalities or issues they needed to be aware of. She was able to get me in the next morning. After some routine labs we were done for the day. I had to be back at Children's the following morning for an Echo and to check with the Blood Center about the blood I banked in Indy.
After about 5 hours at Children's we were off to meet up with Jill and shop Newbury Street, the Rodeo Drive of Boston. It definitely was!!! The stores were amazing. They had everything from Chanel, The North Face, Pet Boutiques and Forever 21. There was also some great places to eat. We ate a snack at a local bar and the home-style nachos were amazing! We all got to talk a bit and learn more about Jill and she explained some different things about herself as well as EDS. Once the shops started to close down and we were wiped we headed back to Jill's hotel. WE grabbed dinner at this Irish bar and restaurant near her hotel. After that we parted ways because we were wiped! Jill and I probably overdid it with walking and being on our feet. I definitely felt it the next morning :) I fell asleep without a problem!
This morning I had to get-up and go get an Echo in the Cardiology Department. It took about an hour because it was a baseline and needed to be thorough and get lots of measurements. I was able to watch Sweet Home Alabama during the test. The Cardiologist thought the images looked good and I was cleared for surgery!!! It was also nice to know that my heart looked good for now. We checked with the Blood Center about my banked blood and confirmed that he had made it to Children's and was ready for my surgery. Again, we headed about to the house, freshened up and headed out into Boston. We headed to the Prudential Center for shopping and dinner because it was expected to rain. On the way I got a call from the surgery scheduler and that my surgery had been moved up. Mind you that I had just found out about an hour before the time and it was already being moved. lol When Dr. Millis prefers it a certain way, he gets it a certain way ;) It was another long day and my hip have definitely been worn out. I am looking forward to doing the Trolley Tour through the city this weekend and see all the historical sites and some fun shops. Of course, we have to leave after the parade for the Bruins Stanley Cup win!! I don't mind sleeping in a bit and watching the parade on TV. I am not sure if I would be able to handle a lot of people, walking, etc., I am pretty worn out.
I do look forward to some fun this weekend. I have been overwhelmed dealing with everything and have so badly needed a break. I am uncertain if I will actually get it though because my mom has been so hard on me and we clash heads a lot. I just so badly want some fun and everything has been a problem lately with her, so its hard to enjoy anything. I don't know if I can handle a continuous beatdown. I am already very anxious about the surgery. I hope it helps and there is some good news because I don't know if I handle anymore bad news.
Jill and Me