I See the Light {DAY 5}

DAY FIVE- Sunday, Jan. 8th

Sunday was my turning point. It has gotten better each and every day since then. Once the nausea was gone for good, I was feeling puny, but a million times better. Even with the reduction in my pain medication, I was able to keep my pain under a Level 5. Thankfully, my facial swelling went down markedly, too.

During the day I focused on getting down as many calories and fluids as possible, and staying on schedule with my meds. We took two long walks, one through the park and another along the bay. In between these walks, I took my much needed afternoon nap, used my heating pad, and walked around the hotel.

You can directly see that the swelling in my face went down a lot. (However, my closed mouth smile was still in need of some serious work.)

                

The beautiful sunset on the first day of my RENEWED LIFE.

Dooms Day {DAY 4}

DAY FOUR- Saturday, Jan. 7th 

• Morning

Once all of the meds from the IVs wore off, I was feeling really terrible. Saturday was my worst day of recovery. Dr. Piper and Lisa let me know that it was likely that my pain would spike over the weekend. Well, it did. I was nauseous again and started the morning by throwing up. I was also freezing. My teeth would start to chatter, which hurt my cheeks and jaw. It felt like it was time for another syringe of meds, Ensure or fluids every second. I really don't know how my Mom and Jay kept up with everything. They were my heros.

Since I was no longer on the IV steroids, my face started swelling and get getting red. (No laughing at my beautiful pics.)

I followed the orders and used the heating pad 5 times a day for 15-20 min.

Profile + Ear Pics from Day Four.

• Afternoon

My sweet, thoughtful and caring Aunt Betsy and Aunt Lindy drove 10 hours round trip to come and see me for just a few minutes. We walked the halls together and I sat outside with them for a little while. Their love, prayers, support and encouragement meant the world to me.

They were a BRIGHT LIGHT in my darkest day.

• Evening

With continuous walking and rest I was in pain and nauseous all day, but didn't throw up again until that night. However, when I did, it seemed that everything I had ingested all day came up. My family was very concerned that I had lost all of my calories, medications and fluids. Jay called Dr. Piper at 10:00 PM. Dr. Piper called back right away and said I needed to reduce my carbohydrate/dairy intake (Ensure/smoothies) and stay on clear liquids only. I had to get down 3-4 cc's of fluid before bed, so didn't become dehydrated during the night. We also thought the pain medicine could be what was making me so sick, so we reduced my Demerol to a half dose, from then on, and I only took it at bedtime and when I woke up.

TIPS- (1) It is much easier to drink out of a glass cup than a bottle, because the glass allows the fluid to flow around the sides of the splint, rather than directly into the front of it. (2) Sleep propped up and place a pillow under your knees. This will help with swelling and take the pressure off of your lower back, to help prevent you from subconsciously rolling onto your side during the night.

Keeping Me ALIVE

There is no way on earth I could have gotten through my first week and a half without the love and support of my Mom and Jay. That time period is a bit foggy for me, so I thought it would be good to have my Mom write a little (well, a lot) about her experience and give tips to help other caretakers.

A NOTE from my SUPER-MOM

It was a privilege to be able to come alongside my son-in-law, Jay, to help care for my daughter, Christine, during this critically important time.  Although Christine is exceedingly competent and independent in her everyday life, I quickly realized how much she dearly needed our devoted care and vigilance in the days following surgery. 

Christine was extremely organized and well prepared prior to surgery, and had anticipated and obtained all the supplies we would need to care for her post-surgery (prescriptions, medical and personal care items, drinks, and nutritional supplements).  This was a great help to Jay and me, as everything we needed was already at hand!  In caring for Christine post-surgery, Jay and I were continually amazed at how very busy we both were in keeping up with her schedule for medications, fluid and nutritional intake, doctor and physical therapy appointments, ambulation, various outings, rest, and in just being at her side spending time with her to encourage her as the hours passed.  Jay and I found that staying very organized and, to the best of our ability, anticipating and preparing for everything that needed to be done, was very helpful. 

On a personal note, as we all know, it is very difficult to see a loved one go through pain and suffering.  It would have been easy at times to be “soft” in our care and not challenge Christine to do all the things that were best for her (as they were not comfortable for her at the time). But as a caretaker, resolute strength kicks in and helps you to see to it that your loved one follows through with all of the doctor’s recommendations.

I must say, and Jay would wholeheartedly agree, that Christine was a wonderful patient!  She did everything we asked of her, even in the throes of many tough moments and hours.  Her incredible will, positive attitude, and faith in God made all the difference.  I am so thankful to the Lord for giving Christine such strength and perseverance, for a marvelous, brilliant doctor and medical team, for a successful surgery, for His help to Jay and me as we cared for Christine, and for Christine’s continuing recovery.

 TIPS FOR CARETAKERS

• Work hard to stay organized, even though it takes extra time and effort.   

• Anticipate scheduled needs – constantly prepare for “the next thing.”

• Write everything down as it happens.  Utilize the medications spreadsheet  provided by the Clinic. Record in detail the times and amounts of medicines and vitamin/mineral supplements as they are given.  Especially in the early days following surgery, in a separate notebook, record daily fluid and nutritional intake (at least until you are sure the patient is drinking the required minimums of fluids and nutritional supplements each day).  Record walks, rests, ice bag change times and later, heating pad sessions.  All of this attention to detail will help you stay organized and will save you from questioning yourself later and struggling to remember – potentially in a time a stress - thus allowing for the best patient care. 

•  During the hospital stay, be informed as to the doctor’s orders for your patient, and be vigilant as to the care the patient is receiving.  Even though you are not the primary caretaker, humans are fallible and can make mistakes, and you may pick up on something that has been missed by the hospital staff.  If you question anything or have any concerns, be assertive and speak up.  And always ask for anything needed, especially fresh ice for the ice pack, any special beverages or flavors of nutritional supplements that could better appeal to your patient, and extra washcloths (unless you are blessed to be right next to the hospital’s linen closet, as we were!).

• Per doctor’s orders, in the hospital, help your patient walk every 30 minutes, without fail.  Be very encouraging, as it is quite an ordeal for your patient (and for the care team -- getting everything unhooked and ready to travel!), but it is so important to recovery.  On the walks, carry tissues or a washcloth and have the small plastic pan handy, if needed.   (As you record a list of the times of all the walks, there should be a great sense of accomplishment for everyone!)

• Keep your patient’s lips moistened with medicated lip balm, especially in the hours following surgery when she is not even aware of the need.

• Once released from the hospital, provide for your patient the most pleasant environment possible for her recuperation.  Encourage walks in the outdoors and activities that are interesting and engaging. On all outings, be sure to carry supplies needed: water or other fluids, a syringe and medications if they are scheduled to be taken during the outing, tissues, lip balm, sunglasses, hand sanitizer, and a note pad for communication.

• If you are staying at a hotel, be certain to get a room with a bar sink, refrigerator, and microwave.  These are absolutely essential.

• Before the time the splint can be unbanded during daily intervals, medications in pill form must be crushed and added to fluids for ingesting through a syringe.  We found that a plastic pill crusher available at any pharmacy is not as effective as a conventional mortar & pestle.  In a pinch, crush a pill with the back of a spoon in a ceramic bowl or cup.  We made a point not to add medications to Ensure or smoothies, as the taste was unappealing and would later be associated with those needed nutritional supplements.  We usually mixed crushed pills and poor tasting liquid medications with Gatorade.

• Keep up with pain relief, as needed.  In our case, though our patient tolerated Demerol well on Days 2 and 3, we reduced the Demerol dose by half on the night of Day 4 since we thought it might have contributed to our patient being nauseous.  By Day 6, our patient was moderately comfortable with taking only Liquid Tylenol in the daytime and the half dose of Demerol at night. We would always give her a half dose of Demerol (and later, Tylenol) in the pre-dawn hours so she would not wake up in too much pain.  The surgical pain seemed to subside markedly by the end of the first week following surgery.

• The doctor’s routine authorization (on about day 5 or 6) for his patients to remove the splint during five 15-minute periods daily is a real turning point in the patient’s case.  Although it is difficult and challenging to accomplish in only 15 minutes splint removal, Therabite exercises, eating a no-chew meal, taking medications, cleaning the splint, cleaning the mouth and teeth, and re-engaging the splint and its banding, after a few times successfully accomplishing this routine, the patient feels more in control of her recovery.  Confidence is built as she begins to gain back her self-sufficiency.  Coupled with our patient then being able to eat a variety of soft “regular” no-chew foods, we found that this day was quite uplifting!  Of course, the exercises and added activity to the jaw and teeth brought a bump-up in pain, but that seemed to subside after a day.  The key in this phase is being well prepared for each break with food and medicine, as the patient cares for her splint, jaw exercises, and hygiene.   The process quickly becomes quite routine and manageable.

Hang in there -- after those first few rough days, each day will bring less pain, healing, and HOPE to your loved one! ~Janet

...

THANK YOU MOM!

I'm an Outpatient {DAY 3}

DAY THREE- Friday, Jan. 6th

• Morning

Yay, my pain level was under a Level 5, so I got to leave the hospital! I felt so free once all of the IVs and monitors were removed. However, because of all of the meds, I was feeling very dazed and out of it. I was also pretty puny and weak, but focused on staying positive and getting better.

Once you're discharged you head right to Dr. Piper's office for a checkup and CT Scan to ensure that everything looks as it should. Hooray, he said my scan looked great!

Lisa removed the ear plugs (placed in during surgery) and steri-strips from my ears. It felt good to have the hydrogen peroxide bubbling and cleaning out my ears! Then, I got my first look at them. It's hard to believe that they were cut open and peeled back for 2.5 hours each just two days before.

There was very little visible swelling or bruising. Dr. Piper is quite the skilled artist. Next up, was removing the gauze patch and steri-strips from my stomach. Once Lisa inspected the incision site to be sure it wasn't red, swollen or hot, I was good to go.

FYI- The ear stitched are dissolvable, but the stomach stitches have to be removed before you go home. Lisa will give you extra steri-strips to place on the stomach stitches if any of them start to unravel as the incision heals. I had a 2 inch area of dark bruising right above my pubic bone, from where the fat was removed. It went away after about a week. 

• Afternoon 

From Dr. Piper's office I headed to Physical Therapy at Edward White Hospital Rehabilitation Institute. After an hour of heat packs, a little massage, TENS and Ultrasound therapy, I got to head back the hotel. I was EXHAUSTED.

For a girl who showers at least once, and a lot of times twice a day, I was really ready for my first shower* since before surgery.

*TIPS FOR SHOWERING + GETTING READY

• Be sure you don't get the water too hot, because you will be feeling light headed. 

• At times when the water is dripping on your face, it gets into your nose and mouth making it hard to breathe. Don't panic. Just use your fingers to pull your cheeks to the sides and take a deep breath. Try and keep your face out of the stream of water as much as possible. When you rinse your face, do it when you're breathing out.

• Don't bend over, this makes you dizzy and you don't want to slip and fall. I found squatting was best.

• I washed my incision sites with gentle Johnson's Head-to-Toe Baby Wash and used Dial Liquid Antibacterial Soap on the rest of my body to prevent any infections.

• Q-tips will become your new favorite item. I constantly used them for swabbing out my nose and ears.

• Don't try to wrap your wet hair in a regular bath towel. This will cause a lot of pain to your ears. For my hair I used Turbie Twist Hair Towels. They are super light weight and didn't touch my ears.


• Before I left for the hospital, I placed everything I would need for showering, and getting ready afterwards, in the shower and on the bathroom counter. This makes it much easier when you're exhausted and not feeling well.

• I also laid out outfits in neat stacks for office visits, walks/lounging, and sleeping, so no one would have to think about one more thing. This really helps when you're felling puny and your brain is foggy!

Next up, an hour Nap (Dr. P only lets you nap one hour a day), using my wrap around Facial Heating Pad for 20 min. (you'll do this 4-5 times per day), and Syringing down crushed meds with Ensure, juice, ginger ale, water and Gatorade (you're supposed to drink 2 liters of fluids a day and consume 1600-1800 calories with 50% being nutritional supplements, 25% being water and 25% of any other beverage). It's hard to get all of this in when you're banded closed, because the syringe doesn't hold very much fluid. Just do your very best!

Then we went for a Walk along the bay (Dr. P wants you up and walking as much as possible). Walking promotes healing and helps to reduce nausea. I also strongly believe it is good for your mental health, especially when sweet little friends come to wish you well...

The nice thing about the St. Pete Bay Walk is that there are lots of benches, so you can sit if you feel tired. Being outside along the water in the beautiful, sunny Florida weather really lifted my spirits! I was very thankful that Jay and my Mom were with me every step of the way.

TIPS- When you're walking, always carry a bottle of water and little pack of pocket kleenex with you. Thick foamy saliva keeps building up in your mouth, so you'll need to spit into the kleenex or blow your nose to make it easier to breathe. You'll also need the kleenex for when you dribble when you drink. You'll be very thirsty.

I strongly believe that staying positive and focusing on getting better, not that you don't feel good, makes a huge difference in how you recover. Get outside and walk, walk, walk! Keep the faith and hope, because it is all worth it!

2 Night Hospital Stay {DAYS 1+2}

NIGHT ONE- Wednesday, Jan. 4th

At 7:45 PM I arrived in my room. Thankfully, that night I had all range of motion back in my face. Dr. Piper did an excellent job, and I had no facial paralysis or excessive bleeding, and no inner ear, hearing, nerve, or bone damage from the surgery. My instructions were to AMBULATE + HYDRATE!

TIP- Make sure to bring a Magnadoole board to communicate. No one will be able to understand you when you try to speak. I chose this over a dry erase board, because there was no need to keep up with smelly pens or erasers.

I was eating (well, swallowing liquids)...

I was walking every 30 minutes...

And I was nauseous, dry heaving + throwing up...

• 9:00 PM 

My surgery pain was well controlled by the IV medications and morphine pump. However, I couldn't shake the nausea. The first time I threw up I was walking the hall. I was feeling so sick that we carried my little pink kidney-shaped pan with me on every walk. The first vomit was a lot of thick, foamy, dark red blood. Dr. Piper assured us this was normal. He ordered the nurses to continue alternating giving me anti-nausea meds (Zofran + Phenergan) until it subsided.
TIP- Make sure the nurses hook up the Vacuum Suction Tube (like they use at the dentist when cleaning your teeth). This greatly helps after you've thrown up or when you have lots of saliva to excrete.

• 11:30 PM 

I got to stop walking the halls for the night, but I was still dry heaving. I slept hard (in-between being woken up by the nurses).

DAY TWO- Thursday, Jan. 5th

• 6:00 AM- Good Morning Sunshine

First thing in the morning I was up and walking again. I continued taking the meds and syringing down Ensure and apple juice. My pain was under control, but my nausea was not.

• 7:00 AM 

I vomited blood again. However, this time it was less thick and foamy, and lighter in color. I continued following all of my orders to the best of my ability. Dr. Piper came to see me on his morning rounds. Usually, you would be discharged at this time, but he was concerned that I was still nauseous and vomiting. He said I needed to stay until we got it under control to be sure I wasn't dehydrated. Again he ordered the nurses to continue alternating the Zofran + Phenergan. They also switched my pain medicine from Morphine to Demerol.

• Mid Morning

I still wasn't getting better so my husband, Jay, starting researching the medications online to learn more. Jay read that Phenergan was a shot, not an IV drug. He went to Dr. Piper and told him that the nurses had never given me a shot. Unfortunately, the entire time I had just been getting the Zofran. No one ever gave me the Phenergan :(. You're on so many meds and nurses are always in and out. My family just assumed they were following the orders.

Needless to say, Dr. Piper was outraged and took care of the situation with the nurses. Everyone who took care of me from then on out was very caring and on top of things. Once I got the Phenergan shot, in my buttocks at 10:45 AM (ouch), I stopped dry heaving and throwing up. FINALLY, RELIEF!!!

• Afternoon

I was still very weak and feeling out of it. Dr. Piper is adamant about not allowing you to be in a lot of pain, so my surgery pain was totally manageable. I cannot remember everything, but I do remember that the sides of my head and ear incision sites hurt a bit, and I would have occasional sharp shooting pains in my inner ears. I had to be careful when getting up and down because my fat graft incision on my stomach was tender as well. My drainage tubes coming out of my neck hurt whenever I would walk. The drainage collection bag was heavy and pulled on the tubes, so I held the bag to my chest each time I walked, which took away the pain. Later in the afternoon, a very kind and gentle nurse, named Joyce, removed the tubes. Overall, my pain remained under a Level 5. For years I had been plagued with neck pain and headaches and for the first time in years I had neither (woohoo).

• Evening

Dr. Piper was still pushing hard for me to get in more fluids and calories. Ultimately, we decided that it would be best for me to spend an extra night in the hospital to monitor my fluid intake and ensure that I didn't throw up again. Anna Marie, my wonderful new night nurse, allowed me less interruptions in the night, and I slept well.

WHEN YOUR GREATEST FEAR COMES TRUE

My biggest worry about the surgery was throwing up with my mouth wired shut. Well, in the hospital and on the Saturday after, it happened more times than I would like to remember. Just so you know, it does all find a way out. Don't panic if it is coming out of your nose and you feel like you cannot breathe. It usually only lasts for a few seconds (and panic doesn't help the situation). Just try to take a deep breath in between gagging. Pulling your cheeks out to the sides with your fingers helps you get more air. And on a positive note, I always felt a million times better after I threw up. That was when I did some of my best walking!!!

My second fear was that the jarring and jerking motion of throwing up would hurt the joint or that my teeth would come out of my splint and get stuck. Well, have no fear. Not only was I tightly banded closed, but there was a steel wire woven through six tiny holes in the splint to keep it together for those first 5 days. Dr. Piper assured me that the action of throwing up would do no damage. He said the fat grafts were enclosed much like an elastic balloon and that they are tough. When they get temporarily poked, they give and then pop back into shape. No damage was done at all!

TIP- The moral of this story is not to worry about it. Throwing up is out of your control. If it happens, it happens. Just MAKE SURE you get the shot of Phenergan! And really, you're on so many medications those first few days that everything is kind of a blur anyway. So, have no fear, you won't ruin the joints or be scarred for life.

Surgery Day

DAY 1- Wednesday, Jan. 4th

PRE-OP

I arrived at the hospital at 9:30 AM. As soon as I got all of my paperwork taken care of, the nurses took me back to put on my hospital gown, treaded socks, compression hose and pneumatic boots, which inflated and deflated, to prevent blood clots. Next, I got my IVs, which included an antibiotic and corticosteriod. The nurse also put a patch on the back of my neck to help prevent nausea. 

It was cold in the Pre-Op room, and the best thing ever was the blue Bair Paws Warming Gown I got to wear. It was my own personal heating system. A hose hooked directly into it, and it puffed up with warm air to keep me very comfortable. Once I was all settled, my Mom and Jay got to come back with me and wait until it was time for my surgery.

Thankfully, through lots of prayers and support from my family and friends, I had a real peace about the surgery. Normally, I would be a nervous wreck about something this life-changing. To put it in perspective, I've never even had a cavity. But, I knew I was doing exactly what I needed to do to change my life for the better. I had complete confidence in Dr. Piper and faith that everything would turn out exactly how it was supposed to be. It was out of my hands, and the only thing I could control was how I was feeling. I chose peace.

After a while the Anesthesiologist came to visit me, reviewed my chart and lab work, and started additional IV medications, which made me very tired. 

Then, Dr. Piper came to check my chart and vitals, and to answer any last minute questions or concerns. Then, I was off...

FYI- The anesthesia medications make you forget everything between seeing Dr. Piper in Pre-Op and waking up in your hospital room. Too bad the amnesia couldn't last the first 5 days ;)!

SURGERY

My surgery took 5 hours. Dr. Piper was great about letting my mom and husband know how I was doing. At two scheduled times (3:30 + 5:00 PM) he sent a nurse out to let them know things were going well. There was also a board that kept them posted on where I was from Pre-Op to Recovery.

TIP- Your family won't see you for about 7 hours. They will be worrying the whole time. Let them know how much you love and appreciate them. Make them Goodie Bags to help pass the time. I stuffed the bags with their favorite foods and candy and wrote them cards. Just stick them in your hospital bag, and as they are rolling you away for surgery, tell them that there is a little surprise in your bag for them. It will make them happy!

***

Below are the photos Dr. Piper took of my joints during my BILATERAL TMJ ANTHROPLASTIES WITH DISKECTOMIES AND AUTOLOGOUS FAT GRAFTS. 

Both my left and right joints had layers and layers of scar tissue, which Dr. Piper had to remove in order to make room to insert the fat grafts into the joints. (The fat was extracted from my stomach.)

LEFT JOINT

Dr. Piper said my displaced disk was buried in the surrounding muscle; he surgically removed it from the muscle towards my cheekbone. The disk was perforated and deformed.

Dr. Piper explained that healthy bone and cartilage should be white. Because the disk was displaced (leaving no cushion between the condyle - the top portion of the jaw bone - and the base of the skull) my joint was functioning "bone on bone."  My left condyle was very red, showing destruction and advanced damage, and the base of my skull was red and marred.

RIGHT JOINT

Although I was also functioning "bone on bone" on my right side, the joint was not as damaged as my left. Dr. Piper removed my right displaced and deformed disk. He also noted that my right condyle was flat, soft, and inflamed.

HOSPITAL RECOVERY

I was told I spent a little over an hour in Recovery, where Dr. Piper monitored me, before I was reunited with my family in my hospital room. However, because of the anesthesia, I do not remember this period at all. 

I kept ice wrapped around my face throughout my stay in the hospital. 

TIP- Monitor your ice pack. Once the ice melts, all of the water goes to the bottom and it gets really heavy. This pulls on your ears and tubes, which can really start to hurt. My Mom and Jay were great about regularly asking the nurses for fresh ice. 

 To ensure there was no damage done to the fat grafts, I was securely banded and wired closed. For five days I could not remove the bands or the splint at all. (I'll wear the splint and bands for 9 months, taking it out for specific times, starting at 15 min. increments.) I had thick, foamy saliva, which made it hard to breathe out of my mouth, and lots of drooling when I used my syringe to drink. 

TIPS- (1) Your mouth will get to feeling really yucky and slimy, so be sure to brush your bands and splint 5 times a day and swish with Listerine as much as you can. (Even when you do all of this, like me, you might get a Thrush infection on your tongue.) Don't stress about it. An anti-fungal prescription clears it up in a few days and it doesn't hurt at all. (2) Your lips will be super dry and crusty. Constantly apply medicated lip balm.

I had an oxygen tube during my hospital stay. This helped with my breathing. I also had bloody drainage from my nose from where they inserted the breathing tubes during surgery. 

Tubes were placed on each side of my neck to drain the blood from the joint. Steri-strips covered my ear incisions, and I had two dissolvable stitches on each side of my face and neck where Dr. Piper had to use a clamp to move my jaw during surgery. We called these my whiskers, as they hung around for about a week and a half before they dissolved.

And, as a bonus, I received a new haircut. Dr. Piper shaved my sideburns and around the back of my ears for the surgery.