SOFT CHEW @ 8 WEEKS

Oh I am soooo happy right now! Dr. G called and he told me that I can start soft chew 🙂 He had his assistant Rene’ call me to talk about what kinds of things I can have, but he said basically anything that I can cut with a fork!

Okay, to catch things up. We travelled to La Jolla where we spent three days. The La Jolla Shores beach has to be the prettiest beach I have ever seen in the contiguous 48! Then we travelled back to Hollywood and did very touristy things – Warner Brothers Studio Tour, Stars Home Tour. I also had a “feeling pretty” splurge where I had a facial, had my hair cut and ombred, and had brow and lash tints done!

On Friday of last week we travelled back to Santa Barbara to meet with Dr. G one more time. He says my top teeth on the left want to “get in the way”. He has worked with bands to get first my canine, then the one behind it to move. Now the one behind that is acting up – kind of a chain reaction I guess. He took x-rays and said everything looks great right now! My condyle fits into the socket like a “pencil in a Dixie cup”, and the one on the right side has a little contact. So if I have any pain at all, it may be on this side. He says it will be fine long term, he just needs to keep an eye on it. He also wanted me to restart on Enbrel when I got home.

I have been having some pain on my right side. Mom and I figured out that it was coming from my ear rather than my jaw because I would get dizzy changing positions and that ear sounded plugged when I talked. So Dr. G had me: take Sudafed twice per day, use Afrin twice per day, Zyrtec once per day, and saline spray five times per day. This was for the three days leading up to our flight. No ear pain on the way home…yay!

We flew home Saturday morning. I had documentation from Dr. G that I need a blended diet and could take liquid nutrition through security. But what a hassle! They had to open most everything and test it. The woman who performed a body pat down on me was so rude – remarking about my food choices and saying things like “she SAID she had jaw surgery” – that I teared up. It’s hard to be coming off something so intense and have someone be so rude and question your intentions. My Mom took the TSA woman aside after that and explained to her how her demeanor upset me and pleaded with her to be more gentle with people who have gone through an eight-hour surgery. The woman thanked my mom!

So yeah, soup and smoothies have really sucked lately. But I am super excited to be on to something new! I got to go to IHOP for my first meal and ordered hashbrowns and chocolate chip pancakes. It took me forever to eat my hashbrowns and only ate about a half of a pancake. I DID NOT expect chewing to feel so awkward and unnatural – basically having to learn to chew all over again! I’m sure it will come back soon, just another hurdle to climb. It’s just super nice to have more options now 🙂 I can also drink from a straw now, so maybe I wont spill so much!

celebrations!

My Mom and I originally planned to stay in Santa Barbara for six weeks, so would have flown home last Saturday. But we decided to stay and be tourists for two extra weeks! Figured why not since I hadn’t seen much of California due to the major surgery. So we moved out of our rented Santa Barbara condo and into a hotel in Santa Monica, where we have stayed this week. We’ve had a lot of fun: finding the Bachelor/Bachelorette mansion, seeing a Chelsea Lately show taping, and interacting with P!nk on a street in Venice!

We had to drive up to Santa Barbara twice this week because Dr. G wanted to keep working on my bite. On Monday his assistant Rene’ called me the “awesomest result in the universe”. When I asked her if she says that to everyone, she said no. She has only used that once before, and it was to a young man whose pictures are on Dr. G’s walls! I need to remember that comment when I get frustrated and think things are going too slowly.

Tuesday night we were stopped at an intersection in Hollywood and a car stopped behind us. The driver wasn’t paying attention and sped up while we were still stopped, and rear ended us! My bands were off and my teeth clenched and I got very worried that something could have happened I already had an appointment with Dr. G set for Thursday so I just had to wait. He was very concerned when he heard what happened, but it turned out that my bite is exactly where he wants it to be. He even turned me loose to wear my bands only 12 hours per day! Ahhhhh, the freedom of spending all day being able to open my mouth and drink without slurping through my teeth 🙂 since I am 6 weeks out and my cheek grafts are pretty much set I can start to SIDE SLEEP but with a very soft pillow! Sweet relief! Plus he only needs to see me once next week and is even considering taking the hook out before I head home because it is useless right now anyway! Rene also told me I was the first patient she has ever given a ruler to so I could measure my bite. She made me promise I wouldn’t obsess over it but could see how invested I was in trying to make my ROM bigger and wanted me to be able to check my progress. I sure am going to miss these two when I leave!

We are traveling to La Jolla tomorrow to spend a few days before coming back up to Hollywood and then back to Santa Barbara on Friday. It’s crazy to think that I only have eight days left in California, and only one more appointment with Dr. G before I fly back to Iowa! And one month from today I will be meeting my new class of fourth graders!

Fingers crossed!

What a good Fourth of July weekend! We brought chairs to the beach for some fireworks and even though we really couldn’t see them due to clouds it was awesome being by the ocean and in that environment 🙂

Saw Dr G today for 5 weeks post op! 3 weeks away from soft chew! I have been so happy lately not having to wear my front elastic that attaches to the hook but I fear I might have to start again soon. It appears my front teeth have shifted a bit since I stopped wearing it. Dr G gave me a new band pattern to try out this week to hopefully correct it. I go and see him again Friday. Fingers crossed I won’t need the front elastic, it just stresses me out!

On a good note I might be able to start sleeping on my side next week! It depends how the bone grafts in my face are doing, he said they’re still a bit soft now but are usually set by the 6 week mark. I would love to get away from sleeping on my back! I wake up a lot more at night and my neck often hurts when I wake up. I’m just not used to it! Dr G is also letting me leave my elastics out for 4 hours at night now to hopefully increase my ROM. He said people who start out with a large ROM in the early weeks sometimes struggle with continuing to make it bigger. This way when I have them off for longer I’ll be talking and stretching the joints more to hopefully help!

This is my last week in Santa Barbara and we leave for some time in Southern California on Saturday. Only 17 more days until I am back in Iowa! Time flies but I am going to enjoy California as much as I can, something tells me I am really going to miss it when I’m home!

4 week post op

I had my four week check up on Tuesday. Dr. G told me that I can start leaving my bands off for one hour, three times per day! Plus I don’t have to wear the front band anymore that attaches to the skeletal hooks in the front of my jaw!!! That is such a relief because of the terrible pain it had been causing me!

Last Friday I got a call from Dr. G’s office asking me to come in for an extra appointment. Dr. G explained to me that when I was saying good-bye the previous day, he noticed that my archwire wasn’t perfectly straight. So he thought about me overnight and devised a plan using the bands on my braces to straighten the front piece of my top jaw. (My top jaw had been split into three pieces during surgery, and the front piece was trying to tilt, making my left canine tooth higher than my right one.) I had to walk around with VERY tight bands on for a couple of hours to get the front piece of my jaw moving. Then Dr. G checked it and taught me a different pattern to use on the bands when I put them on my braces. This new pattern was much tighter than the old way. I had another appointment today (my second of the week) and he told me that the treatment worked! So I got a new band pattern that I started using today and it feels much better! He also said things are looking so good that we can probably start doing just one appointment per week.

When we first decided to come to Santa Barbara from Iowa for this surgery, Dr. G’s office told us to plan on staying three weeks post surgery. We elected to stay for six weeks. I am so happy we did! Otherwise, we may have needed to come back out for this jaw straightening, as this doesn’t always happen to patients post op. The other option would have been to have my ortho align my teeth using the braces. I do NOT want anything to prolong the time I have to have these babies on!!

My left front tooth is turning a little purple at the top, looking bruised around the gumline. Dr. G says that means it is having a hard time getting enough blood flow after the major surgery. About 50% of teeth that do this come around with no problems. If it doesn’t come back, it may need to be bleached from the inside to restore it to the right color. I am keeping my fingers crossed, but at least I won’t lose the tooth!

On a personal note, last weekend my Mom and I went to visit the Gentle Barn in Santa Clarita, CA. Ellie Laks, who started this nonprofit, does amazing work. She takes in the most needy of animals, heals them, and uses them to help at-risk kids heal as well. Check out their website at http://www.gentlebarn.org. If you are coming here for surgery, I highly recommend this daytrip when you are feeling up for it! I really connected with what she is doing and wish I could find something in like this in Iowa to take my students to!

Oh, and we have decided to stay in California a couple of extra weeks! We will be here eight weeks in all. Dr. G wants his out of area patients back for an eight week check, so we are going to stick nearby and explore a little more of the California coast. 🙂

Some tips we’ve learned so far..

Here are some things I learned that might help others going through this:

1. We rented a recliner for me to sleep in post surgery as I am supposed to sleep with my head above my heart. Great call! I recommend it.

2. If you read blogs and they recommend lots of supplies, keep in mind that your doctor may have a definite way of doing things that is different than other doctors. Examples: Dr. G doesn’t want his patients to use any straw products including Zip-n-Sips (even though you squeeze the bag rather than suck on the straw, the liquid is still going in forcefully and can destabilize the incisions), no “Jaw Bra” because icing the swelling interferes with bone healing. The moral of the story: get a list of items from your doctor rather than accumulating a lot of things you may not need.

3. That being said, it doesn’t hurt to have lots of washcloths and hand towels on hand. I used washcloths to hold under my chin to catch drips when drinking. The hand towels function as a “bib” to catch anything that gets through the washcloth. The numbness is no joke! 

4. No matter how much you are prepared, you won’t be prepared! You will rush to buy things after surgery – like 5 ounce plastic cups when you discover you can drink from those better than a sippy cup.

5. You wake up in the hospital and think the surgery wasn’t so bad (I was terrified of what I was going to feel like when I woke up). Day two post op when the swelling starts kicking in you will think differently. It gets a lot worse before it gets better, but it will get better!

6. Just take deep breaths and go with the flow. This process needs time and patience.

 

I go see Dr. G again today. Tomorrow is four weeks! Wonder what he will say 🙂

It has been 20 days!

 

Third post op appointment was with Doctor Gunson today. Time has been going by actually surprisingly fast and I’ve been out in California for over 3 weeks. Ever since I have felt more energetic and socially acceptable in terms of swelling we have been going out and doing more in the city. Beach days, shopping, and even a movie have kept me busy! I admire everyone I see eating outside on the patio of a restaurant and hope they are TRULY enjoying their meal:)  We saw ‘The Fault in Our Stars’ on Sunday and it was the most beautiful and emotional movie I have seen in a very long time! Definitely recommend. It is a tear jerker though and it is a weird feeling that I can’t feel myself crying until the tears hit just above my lips. Haha the numbness creates some weird sensations. 

Speaking of tears I had my first pretty painful experience trying to change my bands today. For those who know me they know I am as squeamish as they come..and as I mentioned last time I am less than thrilled about the thought of touching a hook that is coming out of my bone and pulling on it to try and get a rubber band hooked on. After I did my exercises this morning I went to put the bands on again and when I pulled my lip back I realized the wire has made a pretty significant cut/indent in my lower lip and had started to bleed so that was lovely. Then when I went to try and attach the rubber band around the hook the hook slid to the side and sent a horrible pain through my gums and teeth. It really is a weird sensation to describe but it kind of felt like biting into something extremely cold along with a sharp pain. The last thing I want is to spend my days counting the hours until my next dreaded band change so I was hoping that Dr. G would have a fix for me.

When I saw Dr. G he took off my bands and let me stretch. I informed him right away of what had happened earlier in the morning and he looked and right away said my hook was twisted and pulled out too far, causing the cut in my lip and probably some of the discomfort. He said some patients experience difficulties like I am but on the bright side it means my nerves are starting to wake up more. He twisted the hook to a new position and that was pretty uncomfortable, but quick, so I managed. He commented on how my bite midline is perfect and usually people with joint problems have a shift to one side or the other but he doesn’t see that with me. He also commented on how far I can open my mouth for it only being week three and how all my incisions are closed meaning I can brush all my teeth now (I was having to stay away from the bottom back teeth). All of this was very positive to hear! There are some other minor adjustments he is trying to make with how certain teeth are touching. He added some more bands in other places and it was almost impossible for me to open my mouth. He sent me away for a few hours and then I came back for him to see the shift in my teeth. It looked good but he wanted to keep me like that for longer. So here I am, completely banded shut and I go back on Thursday for him to take a look at it again. Kind of feels like I am back to week one with not being able to take my bands off and open my mouth and drinking complete liquid through my teeth but it’s only for a day so I will embrace not having to change the bands for that day:) Dr. G is going to get me some numbing gel to put on my hook before I change the band from now on. He put some on before he re-banded me and it seemed to help. I only felt a little zing and it was more bearable. Hoping that’s the key!

I also got to see my post op xray! It was amazing to see how many plates and screws are now in my face! The pics are below. The first is pre and post side profile pics. the second has a pre op X-ray on bottom and the top xray is post op with all the new hardware I have! There is also a picture of the hook to give you a better idea of the little devil that is messing with me:) In that pic you can see the hook coming up from where it is attached to the bone and a rubber band wrapped around it. You can also see the line in my lip from being pressed against it too much. The white pieces coming up from my lower lip are my stitches. 

All in all this wasn’t my brightest day i’ve had but I know that is to be expected. Any person who has gone through this process knows some days will be better than others. Besides, most times when I start feeling down I can relate it to hunger and I know how to fix that, at least temporarily. 🙂 I go back to Dr. G Thursday and I am hoping for more bits of good news, no matter how small! 

 

2nd follow up and two weeks post op!!

Yesterday was my second follow up appointment and it has now been two weeks since surgery! I ended up being at Dr. G’s office for a good 2.5 hours yesterday. I have three different sets of rubber bands that have been holding my jaws together. One on each side and then one directly down the middle. The ones on the sides are attached to my braces but the one down the middle is attached to a screw and a hook that are drilled into my actual bone. The screw and hook stick out of my gums and the rubber band hooks on at the top and bottom. This kind of freaks me out knowing I have a screw that is in my bone that I am hanging something off of, but I am completely numb still and can’t feel a thing. Hoping it stays that way at least around my screw and hook! 

 

The first thing Dr. G did yesterday was un band my mouth. I was nervous because that had been like a security blanket for the past two weeks and it was going to be taken off! Right before he did it I half jokingly asked if i should expect my jaw to come flying open after the resistance is released and without missing a beat he replies “yea you should probably have your hand under your chin to catch it- just in case!” This made my heart skip a beat and I think he could tell because right away he said “I’m just kidding that was mean you will be fine.” It makes me glad to know I have a doctor who I trust but also has such a good personality! The bands came off ok and I was then told to open my mouth as far as I could. It was super awkward but I managed to open and close it a good amount of times. Not near the range I had pre op but It will get better, just need to remember its very early still 🙂 after I worked with opening it I was told I could finally BRUSH my teeth! I had been doing a peroxide/salt rinse numerous times a day but nothing compares to brushing your teeth. I was very hesitant to stick my toothbrush in my mouth and could hardly feel what I was doing due to numbness but I definitely felt better after! I am super happy I am able to brush everyday now, I will never take brushing my teeth for granted again!

 

After brushing I took xrays and he said my bones and joints look super! That is so reassuring. I am excited to be able to see an xray here soon of my new jaw, I want to be able to see where he put the titanium plates and rods in my face. eeek! Finally Lena his wonderful assistant helped me practice putting the bands on by myself and taking them off by myself. I’m sure i’ll get better at this soon..I am going to be taking them off and on 2-3 times a day to do exercises now! I am also supposed to start taking all my joint medications again! Before I left the office Dr. G suggested I meet another patient who will be having surgery on Thursday. She is very nervous and anxious and feeling a lot of the same emotions I felt right before I had mine. I was able to reassure her she will make it through and be ok when she wakes up in the hospital. She reassured me with how impressed she was at my progress in only two weeks! It was awesome to meet someone else going through this same process around the same time as me. Definitely makes me feel less alone in it all! 

What a long day mentally yesterday was for me. I try not to get caught up in how far I still have to go but rather how far I have come. Easier said than done but I have made it to my first milestone post op and I know more will be coming! I am now on just a blended diet (doesn’t have to be strained or particle free anymore) and hoping to increase my range of motion a little bit every day when doing my exercises. The one thing I CAN’T wait for is when I can sleep on my side again. It’s hard work sleeping on your back the whole night! Through it all, the best feeling ever is knowing that my front teeth now touch for the first time in nearly 6 years. I’ve often found myself admiring other people who have a perfect, functioning bite and now I am well on my way to having one also!

Another thing I learned yesterday- blended up enchiladas aren’t as bad as you may think and there is no shame in trying to drink hummus 🙂

Maddie

Below is me trying to brush my teeth…haha mom was so proud!

One week Post Op!

Hard to believe it’s been a week since the big surgery..and what a week it has been!!

The weekend was the worst of it with the trip to the ER, the nausea, and the swelling. Saturday my head felt so heavy and every inch of my face felt like it couldn’t be stretched anymore. I took comfort knowing that everything I had read and what doctors had told me was that after day 3 the swelling shouldn’t get any bigger. Sure enough come Sunday evening my discomfort seemed to be alleviated a little bit! I don’t remember much of Saturday because I slept most of it, but I was able to push the fluids on my own to keep the hydration! I didn’t start my new antibiotic again until Sunday and it looks like my old one is what made me throw up. I haven’t thrown up since Friday! (knock on wood) Thank goodness because it is a scary & uncomfortable feeling trying to throw up when your teeth are banded together in three different places! Sunday was the same as Saturday with some relief coming towards the evening. 

Monday was my first follow up appointment with Dr. G. Since it was only five days after surgery it was short and simple. He pressed on my cheekbones a little to help shape the bone grafts he put in my face. I was pretty numb but this was still not the most comfortable. I felt weird popping and crackling sensation in my face along with some pressure. He said he will do more next time. He also checked my bite and answered any questions we had. Most of my questions were things like when will I get feeling in my face back, when will I be able to smile again, when will all the swelling be gone? All of these questions it’s hard to tell but I know I am jumping the gun and it will take a few weeks or months for full motion to return. It is still very early. He said my bite looked great and he was impressed with the swelling as it is no where near as big as some people get. Next week I get to take the bands off to do jaw exercises and BRUSH my teeth!! I so can’t wait for that. I am a little nervous how it will feel to be un-banded and if I will be able to move much but I’m very much looking forward to it! That is next Tuesday.

The past two days have been uneventful just filled with napping, movie watching, taking my long routine of medicines and smoothie drinking. I am on the particle free diet until next week and then it becomes blended only. So all my food right now needs to go through a strainer to be sure no small particles can get in my incision. Thank goodness my mom bought a vita mix blender (LIFESAVER) so pretty much anything we want to blend up has become pure liquid. I’ve still been able to have kiwi and strawberry and other berries with seeds because the seeds are even blended up! Yesterday during my nap I dreamed about pizza. Today during my nap I dreamed about peanut M&Ms. While I haven’t really been struggling in the daytime much with cravings yet you can tell what my subconscious really wants 🙂 Last night was the first time I slept through the night without needing more pain medicine so here’s to hoping that continues again tonight! My poor mom has been waking up with me whenever I need something in the night! A lot of the pain has been coming deep inside of my right ear. Dr. G suggested that someone continue to walk with me whenever I stand up at least for the time being. I feel pretty weak and lightheaded when I stand probably due to inactivity and low caloric intake. I also get really out of breath just walking to the bathroom and back. 

Overall I am very happy with how far I have come in a week! It started off pretty rough but every day has slowly but surely been getting better! I can’t wait to see what other sorts of progress I will continue to make! Although I can’t feel my bite yet due to numbness just looking in the mirror and seeing that my top and bottom teeth touch is pretty exciting! Thank you to everyone at home for the texts, messages, and packages you’ve sent me. It means so much to me! 🙂

Maddie 

 

Below is a picture of right before I go into surgery..I was nervous all morning but when they started wheeling me away I pretty much lost it and was overcome with emotions. The staff at the hospital was amazingly helpful and the anesthesiologist Dr. Funk gave me “bravery” medicine to calm me down right before going into the OR. It worked and I don’t really remember much else until waking up in the recovery room. That is the second picture you will see is me right after surgery. I remember really wanting water but not being able to get any of it, falling in and out of sleep, and the nurse helping me use a suction to get out all the blood that was in my mouth and that I was coughing up- yum! 😉

LeBron’s Got Nothing on Maddie!

Just as I was about to post the last entry, everything went downhill.  Maddie’s stomach decided to rebel, she got dizzy and very nauseous.  After consulting with Dr. G again, we headed back to the hospital, this time to the emergency room.

Maddie was so dehydrated that it took four attempts, and finally the use of a newborn sized needle, to get an IV started in her veins.  Because the needle was so small, it took nearly SIX hours for her to take on THREE bags of fluid.  LeBron only got two and one half bags after cramping up and leaving the now infamous “no air-conditioning” game against the Spurs this week! 

Quite a circus played out in the Santa Barbara emergency room during our six hour visit Friday night.  We listened to, among other things: a heroin overdose where the woman literally stopped breathing and they fought to bring her back to the living, a sixteen year old girl on probation who had used meth and been arrested,  a delusional woman looking for her son who had “been with the police and they were going to kill him”. The nurses said it would have been more lively but UCSB finals are next week so students are studying!

We are back at the condo now and she is sleeping.   Today is supposed to be the worst day swelling wise, then things are supposed to get better.  Fingers crossed!

Days One and Two Post Surgery

Hi – Pat again.  Maddie is very groggy so asked me to write another update.

Some other things we found out that happened during surgery (besides them stitching her eyes shut!):

1.  Her jaw isn’t wired.  Three elastic bands hold the upper and lower jaws together for the first eight weeks.  Two are attached to her braces.  Dr Gunson inserted skeletal hooks in the front of her upper and lower jaws, and fastened the third elastic band to those.

2.   Dr. Gunson inserted a screw into her forehead just above the bridge of her nose.  This was used as a stable point on her face to measure things during surgery.  After he was done, he removed the screw and she now has one stitch there.

Maddie had a fairly peaceful Wednesday night in the hospital.  Her recovery nurse Kathleen took really good care of her until she was awake from the anesthesia.  Maddie was a little uncomfortable because Kathleen wouldn’t let her drink anything.  She was so thirsty during recovery, but drinking could make her nauseous.  After about 1.5 hours in recovery she was moved to her private room, where I had a chair that made into a cot 🙂  Her night nurse was named Ashley.  Not much to report as it was an uneventful night.

She started Thursday with a visit from Dr. G at 7:30 AM.  He had only left the hospital 10 hours before…and had another surgery going on Thursday afternoon!  Yet he took all the time we wanted to answer questions.  I don’t think I have ever met a doctor with such an open bedside manner!  He took all of her head dressings off, so besides a little swelling she looked like Maddie, not a mummy 😉

Maddie’s day nurse’s name was Gilbert.  He was so upbeat, getting her up and walking her around, and he kept at her to “drink drink drink”!  He told us that Dr G has operated on patients from as far away as the Middle East, and that some even come up from Hollywood.  Of course he couldn’t name names…drat!  All day the hospital staff kept telling her that she had minimal swelling compared to others they have seen.  

Maddie was released from the hospital at 5:30 Thursday, barely 20 hours since surgery was completed!  So the fun began…I am now in the dual position of drill sergeant and administrative assistant!  Maddie is on four medications that combine for a total of 10 doses to take each day, and at separate times, and stomach must be coated with liquid 15 minutes prior, and so on.  If that’s not enough to accomplish, she also needs to: take ten deep breaths per hour, salt water rinse her mouth 8 times per day (with peroxide added in two of the times), drink at least 3 quarts of fluids (hopefully getting enough nourishment!) and take a 5 minute walk every two hours!  I finally have a chance to use my obsessive list keeping skills;-)

Today (Friday, day two post surgery) has been tougher than day one.  The swelling has increased just like we were warned, and this is making Maddie more uncomfortable.  In addition, nausea came on big time today, and we lost some ground on what she drank…uh oh!  Dr. G’s awesome assistant Rene’ had me change Maddie’s anti-nausea patch a day early and that seemed to have done the trick until evening.  Now Dr G thinks her antibiotic may be what is causing the nausea.  Ray is on his way to pick up over the counter Zantac for her.  Dr. G wants her stomach to rest and says not to give her any other meds tonight, unless her discomfort changes to pain and then she can have her pain med.