Post-op Days 2-5

Saturday, June 13th: The combination of meds hit hard today and caused Rebecca a ton of drowsiness. I tried halving the muscle relaxers but that caused some small muscle spasms in the jaw area, so I decided to keep her on the full dose. We visited the Museum of Science and Industry in Tampa and enjoyed a cool IMAX on the future of space exploration. However, the kids weren't too impressed with the museum, so we left and went shopping for a bit at a mall in Tampa so Bec could walk around some more. Even though she has been extremely drowsy, as long as we are moving she is doing well. The minute she sits down, she falls asleep. All in all, today was a great day, and Bec is feeling better than I expected. 

Sunday, June 14th: Today is Gracie's 3rd birthday! Of course we brought presents for her (even though we had no extra room in the car), and we started the day by opening presents and singing happy birthday. Later that evening, we had a little party for her and had some cake. 

To keep Rebecca busy, we went to the Florida Acquarium today. We also went on a short dolphin cruise and saw a few Dolphins in the bay. The meds were making her even more drowsy today, but Bec was able to enjoy the aquarium. The med schedule is crazy. I downloaded a pill app to help keep track of everything, and here is a pic of her pillbox to give you an idea:

Bec is really looking forward to tomorrow so she can get her jaw unwired and have breaks from the splint.

Monday, June 15th: Today's the day Bec's jaw is unwired! We started the day off with some Starbucks to try and get a little kick of energy:

Then we headed to Dr. Piper's office. Rebecca's abdomen incision (where they took the fat grafts) has been bothering her. There is a ton of bruising above and below the incision, but Dr. Piper said this is normal. He said the bruising could even go down her thigh. After checking the abdomen incision, they finally removed the splint and introduced Bec to the jaw exercises she will be doing throughout her recovery. She was glad to have a little freedom from her splint. Here is her new look post-surgery (there is still some swelling, but the a-symmetry she had on the left side has shifted a little):

She was also able to move the rubber bands around and has a new look with the splint (she has a total of 10 bands for the next few weeks...in a couple of weeks she switches to 6 bands):

Today was a busy day. We now have a med schedule in addition to splint schedule to manage. The exercises have caused some additional pain and swelling. That is expected and should subside soon. Bec is able to remove her splint 5 times a day for 15 minutes. In a little over 2 weeks, she will have 30 minute breaks 5 times per day. 

Tuesday, June 16th: We had another checkup at Dr. Piper's this morning followed by some neck therapy. Bec has increased drowsiness today and is noticeably drained from this whole process. Dr. Piper's staff assured her this is normal and told her that she's doing exceptionally well. Dr. Piper told her that her speech with the splint in is great. Her pain levels are managed very well, even without pain meds around the clock. Bec will be released tomorrow, but we will be staying until Thursday so she can have therapy on her neck one additional day. 

Surgery and the first few days post-op

Thursday, June 11th: Surgery is over! Rebecca had surgery on both sides of her jaw, removing the discs and replacing them with fat grafts. The surgery started at 12:35pm and ended at 4:54pm. Bec was in a lot of pain when she got to the recovery room, but they were able to start managing the pain very well before she arrived in her room around 6:30pm. When she got to the room, she was fully awake and excited to see me (of course, I was super excited to see her as well). She had no nausea from the anesthesia, which was great since that was one of her biggest fears. Around 8:30pm, we were finally able to get her out of bed and start walking the halls. Dr Piper expects his patients (at least the 2nd surgery of the day patients) to walk the halls 5-6 times before going to bed. Bec was able to walk every 30 minutes because she was determined to get 6 walks in before sleeping. In addition, she drank tons of fluids and had 4 ensures before bed. Throughout this process, she never got nauseous and was only a little dizzy. 

Her first selfie after surgery (that's an ice pack around her face):

Walking the halls:

We finally tried going to sleep around 11:30, only to be woken up at 11:45 by someone coming in for vitals. It seemed like they woke us up every hour through the night for something.  

Friday, June 12th: Dr. Piper's physician assistant (Jeff) came in around 7:30am to check on Rebecca. Around 9:30am, Rebecca was discharged from the hospital, and we headed straight to Dr. Piper's office for a checkup (after stopping at McDonald's for a vanilla milkshake). Bec had a CT scan to check the new discs, and then she had all her bandages removed and the incision sites cleaned. While that was happening, staff went over the medicine schedule with me and gave me a fancy printout with each day's schedule. The medicine schedule is pretty crazy - there are only a few waking hours that do not include medicine. Before leaving the office, Bec had some therapy on her neck. 

After getting back to our condo and seeing the girls, we took a quick nap. After the nap and after looking/studying her medicine schedule, we decided to go shopping to keep Bec active. We went to a huge outlet mall in Ellenton and were there close to 3 hours. Bec felt great and walked around the whole time. 

Here are a couple more selfies from Friday (the swelling around her ears increased quite a bit on Friday since we switched from ice to heating pads):

Saturday, June 13th: Rebecca is feeling great this morning. She didn't have pain meds from 12am-7am but was not in too much pain. The swelling has also increased a little more. We are planning to go into Tampa today and visit a museum of science and industry to keep active for today. 

As a note to anyone that might find this blog before surgery, the hospital provides you with syringes (with an extended catheter) to drink ensure and other fluids. Rebecca used the syringes in the hospital but found that smoothie straws (pink in the pic below) were much easier to use once she was out of the hospital. 

What a crazy week!

We knew this week would be crazy. With our great streak of luck over the past year, the week ended up even crazier than we expected. 

Monday: Today was a full morning of appointments followed by surgical braces. We met Dr. Hobbs for the first time today to go over the therapy he will provide for Rebecca post surgery. Dr. Jackson put the braces on. (And she looks just as amazing with braces on, in case anyone was curious.)

Monday was a tough day, with the reality of surgery on Thursday. Rebecca's mom volunteered to watch the kids for a few hours while we went to the beach. We had a great, relaxing time. 

Tuesday: The first appointment today was at 1pm. She learned how to put bands on the brackets, and Dr. Piper  went over her health history in addition to making sure her splint fit correctly. 

After seeing Dr. Piper, we dropped her prescriptions off at the Prescription Shop in St. Petersburg and headed to the Palms of Pasadena hospital for blood work. 

Wednesday: Today was supposed to be a fun and free final day of the current normal for us. We decided that we would spend the day at the Tampa Aquarium. However, we were about 10 minutes from the aquarium when we were rear ended on the Gandy bridge. We were only going 10-15mph when we were rear ended by some probably going 40mph. We are all sore, and we have quite a bit of damage to our car. But a collision center was able to get the car fixed temporarily so we can make it back home. 

During the car accident, one of Bec's brackets came loose. After our car was fixed, we had to go see Dr. Jackson to get the bracket glued back. We finally made it back to our condo to enjoy a light meal. I'm sure no one will be surprised, but here is a pic of the last real food Bec will enjoy for 3 months (cheesecake with tons of caramel and whipped cream):

Thursday: Today is surgery day! We are hopeful for a complete recovery. Bec was excited today and very relaxed. I can't wait to see her after surgery...

It's really happening...

Last Thursday night (June 4th) we arrived in St. Petersburg for 2 weeks of pre-op appointments, TMJ surgery, and post-op appointments. Rebecca had her first appointment bright and early on Friday morning. That appointment consisted of wax molds and impressions for the splint Bec will wear after surgery. In addition, they did a pretty detailed health history review for their records. We were at the office most of the morning. 

The next few days consisted of some fun activities with the kids planned ahead of the busy upcoming week. On Saturday, we went to the Clearwater Marine Aquarium to see the dolphin stars of Dolphin Tale 1 & 2 (Winter and Hope). That was a huge hit with the kids. 

Sunday, we spent the day at Busch Gardens. We all had a blast and were able to forget about the real reason that we are in Florida. Rebecca's mom was able to travel with us so she could help with the kids (especially after the surgery), and it was definitely nice having 3 adults versus 4 kids at a theme park. 

Reality, and the busy week, starts bright and early tomorrow with an appointment at Dr. Piper's, a consultation with Dr. Hobbs, followed by surgical braces at Dr. Jackson's. Even though surgery itself is kind of depressing, I'm excited that Bec will be able to live more pain free and more normal than she has in years. This week, and the next year or two, will be quite the journey. But I wouldn't choose to journey with anyone else...

Surgery date!

The last few days have been a little crazy. On Wednesday night, Becca and I discussed how the surgery would most likely be in September or October. We decided to start planning for the summer and to put the surgery out of our minds...until we got a call on Thursday around 12:30 from Dr. Pipers office. They had a summer cancellation and wanted to know if we were interested. The surgery date is June 11th...less than 4 weeks away. 

We have to be in St. Petersburg by Friday, June 5th for the start of the pre-surgery doctor visits. Friday will be molds, Saturday will be the day for the surgical braces, Sunday will be an off day (I assume), and Monday through Wednesday will include other appointments and pre-surgery testing. Thursday the 11th will be the big day. Bec will be in the hospital over night and released the next morning. We will stay in St. Petersburg for a week after the surgery, and then it's time to come home...

This has been a crazy ride so far. We moved in December, decided to try a new doctor after moving, saw a TMJ specialist on April 2nd, saw Dr. Piper on May 5th, and scheduled surgery for June 11th. I set up the blog thinking there wouldn't be much activity for the next 6 months, but that was a wrong assumption. I'll be blogging a lot over the next few months and truly hope this is an easy way to keep everyone updated. See ya in a few weeks...

Consultation Appointment

The appointment went great. Dr. Piper is so much different than other doctors...he's caring, thorough, and willing to answer any and all questions that his patients have. We left his office close to 10pm last night and didn't feel rushed at all. 

To give you an idea of Dr. Piper's schedule yesterday...there were 3 brand new patient consultations, meaning 3 new patients arrived by 7am. Each new patient started with a CT scan in the office, molds, wax bites used for an MRI later in the day, tons of pictures of the mouth, and an initial visit with Dr. Piper. Dr. Piper also starts seeing his postop patients at 8am. I would guess he saw 10-15 postop patients before noon. In between seeing his postop patients, Dr. Piper also comes back to see the 3 new patients for a further exam that gives him a better health history and allows him to see the current jaw situation. At 1pm, Dr. Piper has follow up phone conversations for patients that have been through prior consultations. After those phone conversations, he starts the longer health history visit with the 3 new patients, followed by the full consultation and treatment plans. Yesterday sounded like a routine day. In other words, Dr. Piper routinely finishes his day on Mondays and Tuesdays (days that he sees new patients) around 10pm. But, remember as I mentioned earlier, he did not rush or make us feel bad for asking additional questions. 

Rebecca's day went as follows: we arrived at 6:50am and were the 2nd patient; around 7:15, she was taken back for a CT scan, molds, wax bites, and an initial, short visit with Dr. Piper; around 9am she was finished with these preliminary steps; around 11am, she had a full health history done by Dr. Piper's physician assistant followed by a 15-20 minute visit with Dr. Piper; around 12:15, she had to redo her molds because they didn't take very well (mainly due to the fact she couldn't open wide enough); at 12:45, we headed to the MRI office for her 1pm appointment; at 1:15, she was called back to get ready for he MRI; the MRI started around 1:45 and was complete around 2:30; once we were back at the office around 3, we watched a 35 minute video explaining the evening consultation with Dr Piper; around 3:45, we were given a break until 6; we arrived back at the office around 6 to wait for the evening consultation; we met with Dr. Piper starting at 7:05 and left his office around 9:25; we met with the patient coordinator after that meeting to discuss surgery scheduling and costs in addition to what they will do with insurance companies; and we finally arrived back to our hotel room at 10pm, a whole 7 and 1/2 hours before we needed to be packed and ready to head to the airport. 

So...what did we find out? We were given tons of information last night. We have 5 pages of handwritten notes from last night's consultation, and we will receive a full report within a week containing all tests, the MRI, and Dr. Piper's dictated notes. We went into the consultation hoping that Rebecca's joints were salvageable. We found out the previous night that the condyle on each side needed to be at least 50 square millimeters in order for Dr. Piper to do the surgery. Luckily, boths of Rebecca's condyles are larger than the minimum requirements. I was much more relaxed after finding out about those measurements. Here are the highlights of what we found:

- As Dr. Holmes told Rebecca, Dr. Piper agreed that there was a trauma early in her development years causing these problems. Dr. Piper thinks the trauma happened closer to 5 years of age. 

- Rebecca's left jaw is the size of a 5 year old's jaw. This is the case because of the trauma at a young age. The trauma caused damage to the growth plates, meaning her left jaw stopped growing at that point.

- Dr. Piper is cautiously optimistic that Rebecca has enough bone that has not degenerated - meaning that he hopes no rib graft procedure would be necessary. 

- Dr. Piper has a 98% success rate with his surgery. If Rebecca's bone still degenerates after the surgery, she would be in the 2% and the only option would be a total joint replacement. The total joint replacement is only done in Dallas, Texas and isn't a lifetime solution to someone in their 30s. 

- Most jaw doctors just want to complete a bite surgery without trying to correct the initial joint problem. Because of this common practice, the pain does not go away and the problem is not solved. A bite surgery involves cutting the jaw in several places and realigning the jaw with screws. This is a major operation with more complications than Dr. Pipers surgery. 

- Dr. Piper feels that he can solve the pain problem with his fat graft surgery. Other surgeries might be involved at a later date (most likely 2+ years later), but that just depends on how well the fat graft works in the jaw. 

- The fat graft surgery will allow Rebecca close to normal function in her jaw. It will not mean that she looks different or that her jaw bone will be a normal size. 

- After surgery and after the extensive 9-12 month healing process, Rebecca will need braces to adjust her bite. 

There is a ton more information and a ton more that we learned, but those are the highlights. 

So where do we go from here? Rebecca thinks Dr. Piper is amazing and thinks this procedure is best for her. After 20+ years of trying to manage her pain, finding a solution that has such promising outcomes is great. Many people have stopped us and asked why we are rushing into this without finding another opinion. This isn't a first opinion. Or a second opinion. Rebecca started seeing doctors in St. Louis 20 years ago, followed by a specialist in Decatur that made 3 splints for her over the years in order to manage pain, in addition to 2 doctors in Bloomington that both agreed Dr. Piper was her only option. There are other places we could check. However, all of these other options will lead to the options we've been given. If we would explore every option presented to us, we would be spending a lot of extra money (without being reimbursed by insurance), time, and energy that just isn't there. We appreciate options that have been presented by others, and we have honestly looked into those options. There is tons of research available on the Internet. However, Rebecca is physically and emotionally drained from this process and can't imagine trying to find other doctors, especially knowing we will eventually come to this conclusion. 

We don't have surgery scheduled right now. The summer months are booked solid for Dr. Piper. There is still a possibility Rebecca will be able to have the surgery during the summer due to cancellations. We will know more in the next few weeks and can hopefully secure a date in order to start planning. 

We are excited, relieved, anxious, and grateful that we have this opportunity. This is the beginning of what we still hope is a better future...

Consultation Trip

Monday was a travel day to St. Petersburg, Florida. We left home at 7:30am and drove to Chicago for our flight at noon. After a short layover in Charlotte, North Carolina, we arrived in Tampa around 6pm. 

We had dinner with someone Rebecca met on the Jaw Crew Facebook page - a support group for Dr. Piper patients. Kathleen was in town for her 3 months postop appointment. It was great to meet someone that had recently been through the surgery. We badgered them with questions for almost 3 hours. It was nice to meet Kathleen's husband, Tyler, and her mother as well. We had a great dinner with them at Red Mesa Cantina. 

After just a few hours of sleep, it was finally appointment day! We had a quick breakfast at the hotel and walked a few blocks to the Piper Clinic for a full day of testing and consultations. We are excited for a plan that will bring relief from Rebecca's pain and a future that is full of possibilities. I will let you know what we find out...