Post-op Weeks 2 & 3

It's been nearly 3 weeks since surgery! Bec is still doing great, in my opinion. Here is some of what's happened since we've been home:

Week 2: Bec had a severe headache that kept her in bed for a few days. Luckily, we had a phone call appointment scheduled with the physician assistant from Piper's office (Jeff) on one of those days. Jeff was pleased with the progress that Bec made on her therabite exercises. However, he thought we cut back on the muscle relaxers too fast which was causing the severe headache. Instead of taking 1/4 of a muscle relaxer 4 times a day, Jeff suggested 1/2 a pill 4 times a day. After a few days, this solution seemed to work. Luckily, Bec's mom stayed with us most of the week to help take care of the kids (and laundry!) while I worked. 

Week 3: Bec regained her energy this week and has been busy organizing the house and shopping. She is also feeling good enough to plan 2 birthday parties in the next few weeks. She has continued with 5, 15 minute breaks each day from her splint. It's pretty hard to do the exercises, eat (I mean drink) food, and brush your teeth in a short 15 minutes. We are really looking forward to the 30 minute breaks that start in a few days! All the incisions are also healing very well. You can't even tell she had surgery around her ears, and her abdomen incision is feeling better. 

Here are a few recent pics that show how good Bec is feeling:

One of my hopes in starting this blog is that others going through similar situations will run across Rebecca's story and find some answers and hope for their journeys. For those people that run across this blog, here are a few tips (from the caretaker point of view):

1. This surgery costs a lot of money with little hope of being reimbursed by insurance companies. It's stressful. The money might hit your bank account the day you are leaving for surgery. You might wonder if you will get everything done in time. But it's worth it. A better future is worth all the stress. 

2. If you are the caretaker, download a pillbox smartphone app. The alerts will save you from forgetting medicine - especially since the patient is supposed to remain active - which means being away from your hotel/condo most of the day. 

3. The Jaw Crew on Facebook is a great support group for those going through Dr. Piper's fat graft surgery. Bec met a great friend the night before her consultation appointment that has been a HUGE help through this process. I feel it's important to get as much info as possible and to get as connected as possible with other people in similar situations. 

4. Find other blogs with other perspectives. The other two blogs I know of are:

http://mytmjdstory.blogspot.com/

http://grin-andbearit.blogspot.com/

These blogs were a HUGE help and have tons of great information. 

5. The meds post-op will make the patient very groggy and will cause them to forget most post-surgery outings. The meds might cause extra emotions. But they definitely help keep the pain under control. It's worth it to stay on all the meds on the exact schedule that Dr. Piper recommends. 

6. Don't worry too much about finding a special pharmacy that your insurance will cover. The Prescription Shop (the place Dr. Piper recommends) took our insurance and covered everything except the heating pad. It was one thing that insurance has covered so far! Also, if you don't already have one, purchase a pill cutter here. It's a great $6 investment!

7. Make sure you keep on top of the staff scheduling your approintments at the Piper Clinic. They are all very nice people, but we had many schedule problems throughout our 2 weeks in St. Petersburg. You will get a calendar with all your appointments when you arrive for the Friday appointment pre-surgery, but keep asking about upcoming visits at every appointment. 

8. Don't be afraid to schedule another appointment with Dr. Jackson if your braces are causing a ton of discomfort. Bec had to see him post-op because a bracket came loose. She asked him to adjust nearly all the hooks on the brackets, and it gave her immediate relief. 

9. Stay positive! There will be ups and downs. Being positive is a great support both to someone that has been through a big surgery and to someone that is trying to comprehend everything post surgery while on strong medicine. 

10. Take everything one day at a time.

Home!

We made it home! It's so nice to be back home after 16 crazy days. Rebecca did very well on the trip back. Here is a recap of our final few days in St. Petersburg:

Tuesday, June 16th: Since Rebecca was drained from the whole process, I took her to the beach for dinner to try and get her mind off everything. We ate at Spinners on St. Pete beach. Bec was able to have some soup that was put in a blender. This was the first time we attempted eating out, and the restaurant staff was very accommodating. The view from the restaurant was awesome. We didn't actually have a table on the part that spins, but we still had a great view:

Wednesday, June 17th: Rebecca saw Dr. Piper for the final time today. We had several questions since it would be 3 months before we saw him again. One of the holes in the splint was causing some discomfort due to a sharp edge, so Lisa was able to polish the splint to make it more comfortable. In addition, one of the posts on the splint needed fixed so Bec could band the splint properly. Dr. Piper gave Bec a vitamin schedule to follow in hopes it would help the condyle in her jaw to stop degenerating and possibly grow some. Today also included the removal of the stitches from her abdomen (where they took the fat grafts). 

Becca also noticed her back bracket was loose again, so we had to schedule a 5pm appointment with Dr. Jackson. Luckily, Dr. Jackson is at the St. Petersburg office on Wednesday afternoons and Thursday mornings, so we didn't have to spend extra time driving up to his Largo office. After the bracket was glued back, Bec re-banded her splint. While re-banding, she felt something pop, and sure enough, the bracket came loose again. Dr. Jackson re-attached the bracket, and she hasn't had any problems since. Evidently this is common due to the splint. 

Thursday, June 18th: We had one last appointment with Dr. Hobbs before heading back to Illinois. It was hard for Rebecca to leave the security of the doctor office and return to Illinois, but it was also exciting to head home. We met 2 of the other 3 surgery patients that had surgery the same week as Bec, so it will be nice for her to keep in contact with others going through the same process. In addition, Bec has met some great people on The Jaw Crew Facebook page that have helped her with various questions and concerns. The surgery and recovery is a huge process, but the support system we have in place is great. Our next appointment with Dr. Piper is in September. We will find out then how well everything is healing. 

Until September, Bec will have 5 breaks per day where she does exercises, eats (non-chew diet - so she basically drinks), and enjoys some freedom from the splint. For those that might be curious to see what the exercise looks like, here is a pic of her using the Therabite:

I'm relieved the surgery is over and glad to be home to start the recovery. Bec is super strong and is doing amazing so far. I'm sure there will be ups and downs over this process, but I'm excited and still hopeful that this is the beginning of a much better future...

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...