4 weeks post surgery

Ellie can talk clearly now! :)

I took Ellie to Dr. McKenna on Monday. He was very pleased with her progress so far. He took the paper wafer - splint - out of her mouth and he also changed her bands so that they aren't holding her jaws shut anymore. This was a very happy day for Ellie! So now it's just like any other kid with braces and bands. She now says she feels much more comfortable going out to public (it never really stopped her before) because she can talk to anyone to sees now. (If you didn't know Ellie before - she is a talker!!) Her swelling has continued to go down - I would say she still looks just a little puffy in the cheeks. She is still partially numb in her nose and cheeks but she is gaining back some feeling so this will just take additional time.

She is to continue on soft foods only for the next 2 weeks. No chewing. She is gaining her strength back everyday. And she is slowly gaining some of the weight she lost back too.

She is going on our youth group mission trip - she leaves Sunday - this has always been the highlight of her summers so she is very excited that she feels well enough to go! We are just going to send her with her own (soft) food.

I finally got the okay to post pics of her before, during and currently. Just amazing quite honestly. I am so grateful for the Drs. that learn how to do things like this. And even more grateful to Dr. McKenna and the team of Doctors that assisted him through Ellie's surgery and entire process.

The day after surgery :(

2 days after surgery in hospital with Emma

X-rays BEFORE surgery

X-rays AFTER surgery

Profile BEFORE

Profile currently

Happy Camper now!

Day 16

Day 16 - I took Ellie to the Dr. for a followup yesterday. They were all so very pleased with how the stitches, her swelling, and overall health was going. We were instructed to keep on doing what she has been doing and they will see her back in 2 weeks.

So, she will continue being banded shut 22 hours a day. During those other 2 hours, she can take the rubber bands out and eat soft foods, that don't require chewing. Then brush her teeth and put bands back in. She can only open her mouth (when the bands are out of course) about 1/4" or less. He explained that she would do physical therapy to open her mouth wider once she is out of the bands. She wanted to go ahead and start start stretching her mouth to open wider but Dr. McKenna said no, not yet. She can barely get a spoon or fork in her mouth but she can if she uses a baby spoon.

I would say the most challenging part for Ellie right now is that she is hungry for meat or substantial food, but is unable to eat it. She does mashed potatoes, mashed sweet potatoes, smoothies, ice cream, milkshakes, Italian ice, yogurt, mashed potato salad, drained soups, slushees, broths, etc. She is so ready for something else! We have tried to puree chicken, BBQ, etc but I guess she is not quite desperate enough yet, because she can't get past the way it looks. I must say, food looks a lot different when it is pureed. Not a good look at all. :( I don't blame her. We hear stories about people that put all kinds of things in the blender and eat it (hamburger and french fries, steak, thanksgiving dinners, etc), so I know that this can be done and people do get desperate enough.

Dr. McKenna did take off one of her bands, so she only has 2 bands holding her teeth down, which does give her a little more flexibility which allows her to be able to talk a tad more clearly when she is shut. I think most people would be able to understand her now. :)

Ellie has continued to be amazed at people whom have reached out to her by way of a card, book, gift, flowers, ballons, food, etc. Ellie has always been a very caring person, but this has made her realize what an impact it can make by offering a gesture of doing something nice for someone when they are going through a challenging time. I can't say enough just how blessed we feel.

Day 11 - post by Ellie

10:30 pm - I keep forgetting I'm wired shut, it's the weirdest saddest feeling ever, I'll wake up in the morning craving something basic like Cheerios and I think "I'll have Cheerios for breakfast!" but then I remember I can't eat things that have to be chewed.  Then  I yawn and I remember that I can't open my mouth. This happens about 4 times a week. We went to the lake this weekend which is one of my favorite things ever to do! Bailey and Christina came with me and I'm so glad that they came with me! They keep me positive and upbeat about this entire situation! Again thank you so much for everyone's prayers and support! It makes all the difference! My mom told me today that 350 nuns were praying for my recovery and safety! That is crazy to me that people care that much!

Day 10 - Post by Ellie

4:00 pm - POST FROM ELLIE...

I feel so much better! All the love and support I have been getting is unreal. People I hardly know send me gift baskets and notes! It's so sweet!! Sometimes if I move to fast, my ears will start to ring, so I have to sit a bunch, which can be annoying but not a big deal. The worst part is when I go into public, people (that work there or if I see someone I know but they don't know that my mouth is banded shut) will try to talk to me and I just try to smile and nod or grunt at them and then they get scared or think I am being rude. But, it is okay, because in July, I will be back to normal! Thanks again to everyone for your amazing love and support!!!

Ellie

Day 9

6:30 am - Yesterday, I took Ellie to Vanderbilt for a checkup. The Drs were all very pleased with the progress she has made and how well she is doing. They did have concern over her liquid intake but felt like cutting the wires would help that for sure. They cut the wires off and he banded her mouth shut instead. Her teeth are in same position as being wired shut but the positive is that she has to wear them 22 hours a day, which means she can take them off to eat soft foods, brush her teeth then put them right back on! This will for sure be like this for 4 more weeks but I'm not sure after that what the plan is. The bands are on there tight and placed up and down while crossing over. Hard to explain but it's not like you just hook the top to the bottom. And she still has that splint in her mouth - this is to ensure that her teeth are in the correct new position. Anyway, as soon as we got in the car to head home, we stopped and got her a smoothie. She took her bands off and drank the smoothie all up. Then, as I'm driving back to BG, she tried to get her bands back on and could not. :( She became terribly frustrated and upset. She tried and tried. Then literally fell asleep crying. Broke my heart. I called Dr. Compton (thank you God for Tom Compton!) and he came over and put the bands on her. She never took them off again last night for fear of not being able to get them on again. We are going to go to Dr Comptons office this morning for a "lesson". It was a frustrating experience for Ellie and honestly this stressed me out more than the surgery itself!

The frustration is setting in for Ellie in not being able to communicate like she normally does. She tries to talk to us and we guess what she is trying to say, after about 4 guesses, she just looks defeated and walks away. I'm saying Ellie please text me! I know this has to be so trying on her patience. I suggested carrying around a notepad or just using the notes on her phone to type what she wants to say but I guess that gets old. She wants to be understood with her speaking.
Please pray with me...
• That she can master these rubber bands while keeping her teeth placed properly in the splint!!
• That she will develop a new level of patience while trying to communicate with her mouth banded shut.
• That her friends will continue to give her positive energy and being with them with lift her spirits and that everyone will begin to understand her better.

Thank you again for all who have continued to stop by with food, flowers, and gifts. It really makes Ellie feel good to know people care. And it makes me feel so completely and utterly blessed to have such wonderful giving people in our life.

Day 8

8:15sm - Ellie kicked me out of her room last night. I've been sleeping either in her hospital room or in her bed since she got home. She accused me of snoring! (What?!! Stephen has never told me that before!) And she said she wants the whole bed to sleep in. So I sat the bell and also the loud obnoxious horn on her nightstand so she can let me know if she needs me in the middle of the night. I never heard from her and she is still asleep.

Today is a big day for us. Olivia is graduating from 8th grade tonight. :( And today I'm taking Ellie back down to Vanderbilt to the Doctor. The plan as far as I know is that he is going to cut her wires today and put tight bands on instead that will keep her mouth shut still but the good news is that she only has to wear them 23 out of 24 hours a day. This will give her say, four 15 minute breaks where she can take the bands off and brush her teeth!!! And she will be able to get some foods in during this time. She still won't be able to chew anything but she will be able to have things that don't have to be chewed like mashed potatoes, milkshakes, smoothies, jello, etc. I'm going to try to think of the most fattening high protein high calorie things I can to feed her.  I'll update again after we talk to the Doctor and find out more.

Day 7

5:45 pm - Ellie has had a great day today! She's one amazing young lady! I can hardly believe she had such a major surgery since one week ago. She's been up and out of the bed pretty much all day. She wanted to go to the cabin today so we took a road trip up there for a couple of hours. Her swelling just looks better and better everyday. Her liquid intake is better today too. Overall she has just had a terrific day today. So thankful!!!!!

Day 6

8:45am - Ellie played "Life" on the iPad with Emma and Abbey until about 11 or so. They all had fun and Ellie laughed a lot - which is quite painful when she smiles or laughs - but I guess I look at it as a good kind of pain. :)
She woke up at 12:45 asking for pain med. She had trouble getting it down. It's the weirdest thing ... Sometimes she just can't get the liquids to go down her throat. It just comes out. We haven't figured out why this happens but anyway this was one of those times. The pain med kept coming back out. She was crying in frustration but managed to get about half of it down. Then at 3 she woke up and I asked her if she needed more pain med and she said no. So I was glad the half dose was enough.

She told me (wrote me) this morning that her lower jaw area and bottom lip aren't numb anymore. This is good news. There's always a risk of permanent numbness when you undergo this type of surgery. The numbness can last for months. Usually at the 6 month mark, if you still have numbness it's more than likely permanent. And it's most common for the permanent numbness to happen on the bottom due to the amount of nerves that they work around on the lower jaw. She told me a few minutes ago that she can't tolerate the ice packs anymore because now she can feel it and it's too cold. So I got her a cold washcloth instead.

She ended up drinking 18oz yesterday. Which again is an improvement but we need to keep striving for 32 (or more in my opinion)!! I can't hardly stand to think about how much weight she is losing. Can you imagine only drinking about a water bottle a day? I keep reminding myself that once she can expand her eating that she will gain that weight back quickly!!

If anyone is up for charades, come on over! I feel like it's a constant game of charades to figure out what Ellie is trying to say. Sometimes it's pretty funny. As we are all trying to guess what she is saying!!! This can be comical.

7:00 pm -Ellie had a great day today. Her face swelling is really looking better. And she has had a better appetite today - she has had 22 ounces! Thankful for progression! She had tons of friends come over today and that always makes a difference. She has the most amazing friends ever too. :)
Tonight I am thankful. Thankful for friends and family. Food, "happys" for Ellie, cards, prayers, visits, etc. Thankful for the people that make a difference. I think God puts it on people's heart ... So thank you for listening to that nudge.
Thankful that Ellie drank more today. Thankful that her pain has improved so much. Thankful that they didn't have to take bone from her hip! Thankful for answered prayers.

Day 5

8:00 am - This being a nurse is a full time job! Sorry it's been hard to find the time to update. But I so appreciate everyone checking on her! Ellie ended up drinking 16oz yesterday. Which is not where we need to be (so please keep praying about this) but it is a huge improvement!! I get so excited when she drinks. You would think I had just won the lottery. Overall I would say yesterday was her best day - lots of friend time - which always lifts her spirits.

I kicked Stephen and Olivia and MaryClaire out and made them go to the lake for the weekend. :) I told Ellie that since that didn't end up taking bone from her hip, she will be able to go to the lake much sooner than expected!! She asked if I would take her on Monday. I said yes if you feel like it. So I know her "drive" is still there and that makes me happy. She also asked me if she could go to Wesley's graduation party today (Sunday) for 10 minutes, I said yes if you feel like it. I know these little outings will lift her spirits so I'm all about trying to make them happen as long as she is. We will see how today goes.

Ellie begged me to not wake her up for pain meds throughout the night. I emailed her Dr and asked about that. He said that would be fine to let her sleep. So that is what we did. She woke me up at 3am and asked for some. And at 5 she was stirring around and I asked if it was still hurting and she said no. She's still asleep. She is getting a good night of sleep that is for sure. Sleep does a body good - this is the time that your body heals - while you are asleep. We are grateful she slept well.

She is really getting irritated with the excessive drooling that goes along with this recovery. I had read that you go through towels like crazy - and we are! She keeps a towel around her neck and basically just constantly keeps it up to her mouth to catch the drool. I emailed Dr McKenna last night for her inquiring how long this drooling lasts. Her face still has numbness and she can't close her lips yet so this is why she drools.

So prayers needed... drink up!!!!! Less drool!!!! Continued lifted spirits!!!!! No infections!!!!!!

I'm so extremely grateful for everyone that has helped out by gifts, time, food, love and most importantly praying. Thank you all so much.

4:00 pm - Ellie has been feeling a bit down today. Her pain has not been bad at all - between a 4-5 all day and she has hardly had much pain med at all. I think her spirits are down because today is BGHS graduation day and she is missing it. Then there is the graduation party of a good friend of hers that she is missing tonight. She decided she won't be able to make it tonight :( I am sure when you are 17, and school is out, and all your friends are free and out having fun... it is just hard. I knew there would be good days and bad days - ups and downs. That is life honestly, isn't it? She gets her energy from her friends, that has been very evident in Ellie's life, and that has not changed, she just needs some friend time.

So far today, we are at 10 1/2 ounces. Keeping track of this reminds me of when you have an infant and you keep track of their intake. I am reliving the baby days. :) Our next door neighbors just added on a really beautiful outdoor living space, so I managed to get her to go over there with me to check it out. She needs little outings. She really liked it and wants us to do the same thing at our house. :) (Thanks alot Craig & Debbie - haha)

She did have 2 accomplishments today - one - she was able to close her lips - yay! This enables her to not drool. Her lips and face is still numb so her lips naturally are open but if she makes an effort she can get them to close. And then she drank from one of those little bitty paper cups! It holds exactly 2 oz and it was much quicker than drinking from the syringe. It does make a mess because some of it comes out, but still this is wonderful news.

8:45 pm - 7:00pm -  What started out as a down day has ended as a good day. Ellie had a friend stop by and bring her some dry shampoo which was so sweet (she can bathe but hasn't tackled the shower yet due to her lightheadedness - momma won't let her!) and then had 2 cousin friends from Franklin stop by on their way to the lake. They took Ellie for a ride - went to Sonic. Then they were determined to get Ellie to drink up! They decided to stay and spend the night - such sweet friends. Warmed my heart. So we all cuddled up in blankets and watched Frozen. 

Ellie's swelling is improving. She's still very swollen of course but it does seem better everyday. She's only asked for pain med once today (twice including middle of night) so her pain is doing much better! She gets light headed and dizzy often but I'm sure that's to be expected when you are barely getting intake of nutrients. Her burn has been bothering her some today - she's putting medicine on it now. You know, I'm really proud of her. It's so amazing when you think what she has gone through and what she is going through. She is amazing. I love this girl! My heart is full tonight. Thank you, God. 

Day 4

12:10 am - It's been a rough night. She's not drinking enough fluids at all. Nothing tastes good to her. And if it does taste good, it only tastes good once. Like the potato soup purée - she loved. But then when we tried again, no she wouldn't drink it. I've tried all her favorite drinks. Sweet lemonade tea, lemonade, apple juice, Gatorade, watered down chocolate milkshake, etc. It's a struggle. She's feels so badly that she doesn't like anything but she says everything makes her stomach hurt, then that makes her feel like she's going to get sick. She's dizzy and light headed. Of course I'm thinking because she's only taking medicines and there nothing on her stomach. Double edged sword. She cried often today. Depressed. Sad. Regretting doing this. Again this was something that warned us of - this is all normal expected feelings during the first week. But this breaks a mommas heart!

Please pray with me that today (Saturday) will be a much better day. God give her the ability to press on and drink even if it doesn't taste good and help her stomach feel better. God give her hope that she will get better and that she sees the light at the end of this tunnel!

We have been blessed with some really great friends and family that is for sure. Gifts, flowers and food - it does certainly help when there is some stress going on in the house. We are so grateful.

8:00am - Ellie slept really good last night. I got up at 2:30 to give her meds then she went right back to sleep. Then I had my alarm set for 5:30 for next dose of medicine. I woke up and thought it seemed really light outside so I looked at my phone and it was 6:40. I checked my alarm and when I went to the alarm app it was "on" at 5:30 but it turned "off" as I was looking at it. Call it Devine intervention or what? I'm guessing someone knew that she needed sleep more than med?

I emailed Dr McKenna last night with concern over Ellie. He quickly emailed me back and said to try switching from the prescription mouthwash (which can alter taste) to regular mouthwash. So we made that change this morning and ... Good news! She has had orange juice and tea this morning and both tastes normal. She's only had 2 ounces so far but I told her she has to drink 30 more today. I suggested (thanks to a friends advice) that she be in charge of coming up with a schedule that suits her. I don't care how she does it but get the fluids in. She had a friend come pick her up with morning and they went for a short ride. It lifted her spirits but wore her out. I told her the more she drinks the more she will feel like these little outings.
She needs her friends right now more than anything. Y'all that know Ellie know what a "people person" she is!!! This is how she will recover. Please know that we welcome Ellie's friends over anytime!!!!! Our home is open to all her friends, as usual. )

3:00pm - WRITTEN BY ELLIE...
I have loved the amount of support that I have gotten from my friends and family, the uplifting attitudes and spirits make me such a happier stronger person! I love everyone coming by and all the prayers they send, thank you!!

Day 3

3:00am - Ellie has had a pretty decent night. She has taken Apple juice several times tonight and then taken her pain meds. She is looking forward to being able to swallow a pill instead of the liquids but she's doing it despite the bad taste. Her hips are killing her - because of her burn on her backside - she has been laying on her sides. Now her hips hurt but the nurse and I just got her settled on her back with lots of pillows underneath her. Hopefully this will provide some comfort and not be too bad on her burn. The positive is we will be going home today and there be more options of places to rest. We might have to break down and get her one of those tempupedic like toppers? Plus at home she will probably feel like walking more too. She is watching tv now.

7:15am - we just got the green light from Dr McKenna to come home! Yay! We will head to BG as soon as we are released and packed up. Pray for her to do okay in the car. All the movement may be rough so let's pray she can sleep the whole way.

8:45am - The depression that they warned us about is kicking in. They told us she would wonder the first week why she ever thought this was a good idea. That time has come I am afraid. She's feeling very down and very helpless. We are still at the hospital and just waiting for paperwork to be released. Please pray for her happy spirit to shine through and get her through this. She's going to need her friends for support.

2:00 pm. - We are home. She wanted to get in her bed. She drank some purred potato soup that Ann made. Now is the time she has to drink 32-64 oz a day. So I'm turning into the drink notsi. The 2 most important things besides controlling her pain, is that she has to drink (doesn't matter what, just drink!) 32-64 oz a day - they prefer 64 oz! Secondly, oral hygiene. This prevents infections. She has to use this mouthwash and kind of shake her head (can't do a normal whish when you are wired shut), and then she can't spit, so she has to use the suction device and suck it out. Then she has to use a baby toothbrush and gently brush the outside of her teeth. Prayers appreciated for both of these obstacles! I am attaching a photo of her X-rays! The doctors were so pleased.

Day 2

9:25 pm on Day 1 actually (but my Day 1 was full - it's close enough!)
Ellie perked up this afternoon/early evening. She wanted her phone a lot (good sign), she even tweeted ... "Since you are my rock and my fortress, for the sake of your name lead and guide me." Psalm 31:3
She had some family friend vistors and she really enjoyed seeing them! Made my heart happy! She even took some photos with them (I can't post them though!). But she was happy they had come to visit.
We may get to come home tomorrow. Just depends on how she does overnight and in the morning.
We need specific prayers please...
• Ellie needs to drink more!
• Ellie needs to be able to tolerate liquid pain meds!

 She got up pretty easily (as easy as it can possibly be when your attached to IV's and all that!) and went to the bathroom. We never made it down the hall to see our friend Tory. She said she wants to go see Tory in the morning.
Please add Tory to your prayer list. She broke her elbow and wrist in 2 places and she had to have plates put in. They are having a hard time keeping her pain under control.

We are thankful and grateful tonight - her back and arm are feeling better. And her jaw pain never got above a 5 or 6. We are thankful for the physicians and staff here! These people are using the gifts God gave them to bless other people! Isn't that what it's all about?

7:30am - Ellie had a pretty good night overall. She was worn out last night and slept pretty well. She took about 1oz of Ensure last night and was able to take the liquid pain med. Then this morning she just took 2oz of Ensure. They are going to wheelchair her over for X-rays this morning to see how her bones are healing. Then he said she should be able to come home this afternoon!!!

11:30am - Well we have had some setbacks but could be worse I guess. Ellie's pain reached a 7 and it had been difficult to get it under control. She went too long without pain med and once that happens it's hard to recover. They are giving her pain meds about every 3 hours now to try to calm it down. Then they had to wheelchair her to Dr McKennas office which was quite painful for several reasons. It was her peak pain in her jaw at that time and also she had to sit in the wheelchair which caused quite a bit of pain to her burn. It broke my heart to see those big tears coming out of her eyes and I couldn't fix it. :( She has a friend cousin here now - Emma - and that makes her heart happy. I'm not sure if we will get to come home today or not. Ellie just told me (via text of course) that she wants to stay here another night.

1:30pm - they are going to unhook her from everything at 2:00 today and see how she does with no IVs. It will be so much easier to move around and go to the bathroom when she's not hooked up to everything. She's been taking her oral pain meds regularly now and we will make sure that we don't skip a dose. They would like to see her pain level at a 2 or 3.  She's down to a 5 now. They delivered her suction machine for us to take home whenever we leave. This sucks out saliva from her mouth and she uses it often. Also she has to use an oral rinse mouthwash to "clean" her mouth since she is unable to brush her teeth. And she can't spit so she uses the suction machine to get the mouthwash out. I'm not sure when Dr McKenna will be back but we will decide them whether we are leaving today or not. I don't think she would enjoy the car ride home (bouncy, bumpy etc) but I think she would be more comfortable. We will just do whatever he and Ellie decide. We just got a chocolate milkshake delivered to the room. Hoping we can talk her into drinking it.

5:00 pm. - We are staying another night. She just doesn't feel good. Light headed. Dizzy. Jaw pain is a 6. They hooked her back up to the IVs too. Dr McKenna really encouraged her to get up and walk. She did get up about an hour ago and walked down the hall a bit. Next time we will try to go a little farther. Baby steps. A dear friend of mine gave Ellie a wooden cross made of olive wood from Bethlehem with a star on it and inside the star is a tiny piece of fabric that has touched Jesus' tomb at the Holy Sepulchre in Jerusalem. How cool is that?! Ellie has been holding it and is keeping it in the bed with her.

Dr McKenna was actually pleased with her liquid intake. He said since she is still getting fluids through IV, it's fine that she's not drinking 32-64oz yet.

Overall I'm so proud of her and feel like she's doing so well. I'm sure she's ready to strangle me as she's trying to tell me something and I can't understand her so I'm guessing a million things, getting them all wrong, then she finally writes it down. But I've only gotten a mean glare once when I accidentally stepped on her IV cord and it pulled on her hand. I felt terrible! She's been great and I think she is looking better - the swelling is going down a bit - however she thinks she is scary looking still.

We have all our prescriptions ready to go home tomorrow. She did put clothes on today before she walked a little and I was thinking it had to feel better just to be in your own clothes.

Day 1 Written by Ellie

This post is written by Ellie...

Wednesday May 21st 11:22am

My mouth is very sore, but my arm and back hurt even more... I look really scary and swollen. I'm scared to see myself in the mirror. I hope I get to go home soon. I just hope I can look at myself without crying soon... I really don't look like me...

Wednesday May 21st 5:02 pm

My head is a little dizzy but I'm not in much pain. Abbey came by for a little while, I liked seeing her. Tori Willis is down the hall and I want to walk down the hall tonight to see her! Ray & Jonathan and Dr Compton all sent me flowers! They are all really pretty! I think Emma and also Reagan are coming by tonight to see me!

Day 1

2:30am - Ellie has a sore (red & raised) area on her lower back/hip area. It is causing her a great deal of discomfort/pain. That is a 7 on her pain scale while her jaw is a 3. Two nurses have come in and looked at it. They are calling in a team and a doctor to take s look to decide how to treat it. For now, she is laying on her sides and not her back. Thinking back, the first thing she wanted when she woke up from the surgery is a pillow to put under her hip area. I guess it could be a bed sore from laying on her back for what was 16 hours total including prep and recovery. But I don't know. I just want them to treat it to make it feel better for her. Let's pray specifically for this area to heal and give her relief from pain. She did also ask for her phone - which is a positive in my eyes. Girls gotta have her phone. :)

4:15 - The sore spot is really bothering her. She has taken more pain med. She is bleeding out of her mouth and this is very scary to her. The nurse has assured her it's normal and not excessive. She also just wrote me a note saying that she is scared every time she coughs. I'm sure coughing while you are wired shut is frightening. Please pray for God to give her peace and comfort.

6:00am - Ellie's jaw is hurting. She woke up moaning and pointing to her jaw. It is very swollen. The Dr had prepared us for that. He said the peak swelling is day 3-5 so it's normal to get worse before it gets better. Her lips and lower half of her face are really swollen. She's resting now. They have her in an ice head wrap plus a wrap around her chin. She wanted the ice off but I explained that the ice is very important to help the swelling. Dr McKenna wants her to keep ice on it.

6:45 am - Dr McKenna just came by. She started feeling nauseous as I was giving her Advil (liquid of course through the syringe) so they just gave her some nausea medicine. The dr thought she was doing well with her jaw. The pain is a 5 and he said the goal would be a 3 or 4. He is sending the wound team in to look at the place on her backside. He thinks it's a bad bed sore from laying in the same position for so long plus that had her hip elevated because they thought they would be taking bone from it. So she is only laying on her sides. He stressed the importance of her drinking a lot of fluids today. She can have water, Apple juice, popcicles, chicken broth. Any of those things that sound good. She's asleep right now.

8:45 am - She is having several sources of discomfort/pain. Her jaw (which is now a 5), her back (which is a 7), and her right arm (which is a 6). I think her right arm has been in a bent position for so long that it hurts whenever she tries to straighten it. I'm not worried about this but it is bothering her. I'm sure once she keeps stretching it, it will feel better. They want to switch her over to liquid pain meds since that is how she will control pain at home but everytime we try it, it makes her feel nauseous and we have to stop before she's taken all of it.
Also we saw herself in the mirror and it scared her. She wrote me a note saying she looks so scary.  I reminded her that we expected that and made a note to myself .... Take her glasses off when she goes to the bathroom so she can't look in the mirror. However she has her phone. I don't think she will be taking any "selfies" anytime soon!!!!

9:30 am - They have determined the place on her back is not a bed sore. They aren't sure what it is but they are treating it like a burn. She drank 2 oz of Apple juice.

1:15 pm - Ellie is very uncomfortable. Her back, her arm (she feels like she can't bend her arm, she moans in pain when she tries to straighten it - I'm guessing must be because she has had it in a bent position for so long) , and her face are hurting her. They are treating her "burn" on her back hip as a burn. They just put some Silvadene cream on it and then patched it. We are going to try to get her to stretch her arm out little by little. They also decided to up her pain pump medicine. They want her to take pain medicine in liquid form since that will be what she has to do at home. However whenever she starts to drink it, her stomach hurts and she feels like she is going to get sick. So we will keep trying...
She cried when she looked in the mirror. I knew she would look swollen and not like herself at all but I guess it was just shocking for her. After about a week, the swelling should start decreasing however it will take several months before it's completely gone.
We need prayers for the following...
• Ellie's mysterious burn or sore or whatever it is on her back - pray for it to dissipate and feel normal.
• Ellie to be able to tolerate the liquid pain medicine
• Ellie to be able to drink between 1-2 liters of fluid a day (that's about 32-64oz) ... So far today she's had about 5oz. This is very important!!!!
• Pray for Ellie's arm to feel better and gain full range of movement
• Pray that Ellie's doesn't feel fearful when she has to cough or sneeze.
• Pray that when she looks in the mirror, she sees the sweet beautiful determined God loving girl
that's there!

Surgery Day

We arrived to the hospital at 6:15. We talked with all the people that will be caring for Ellie today. All so wonderful and sweet. All saying all the right things to ease our nerves. We got seperate phones calls from Joe Patterson, Jason Brown and Christy Allen. Ellie put each one of them on speaker phone and they each prayed with us. It was very comforting - what an amazing church family we have. We are truly blessed. They wheeled her off at 8:15 and they called us at 9:15 to let us know she did great going to sleep and they were getting ready to start. They will be doing upper jaw first.

10:15 - They just called. Said they are still working on her upper jaw. Said her vital signs are good and she is doing fine. Makes me feel kind of sick to my stomach... Glad it was a good call though.

11:15 - They just called again. The cuts have all been made on the upper jaw and they are putting the screws and plates in now. They haven't started on the bone graft yet. They put the jaw into position and then will add the bone. Thank you for praying for her. Please continue to do so throughout the day.

12:15 - They have started working on the lower jaw. Her blood pressure and heart and vitals are all good. Praise God.

1:15 - They are still working on her lower jaw. I asked if Dr McKenna was happy with the way things were going and she said yes very much so. She said Ellie's vitals are staying strong. Keep praying.

2:15 - Everything still going well. They are still working on cutting the lower jaw.

3:15 - They are putting in the screws and plates in her lower jaw now. After this, they will go in and take the bone from her pelvic/hip.

3:45 - A little scary when my phone rings not on the scheduled time and it's Dr. McKenna! However he had great news!!!! He said that he has been so pleased with how everything has gone so far. He said her bone is so stable and hard and that is something that he can't tell on the CT scans. He said he feels like we can use cadaver bone instead of her own bone! He explained that because her jaw and bone is so stable and strong that he feels like we can go with this plan - which is wonderful! He said her recovery is going to be tough enough anyway and not having to use her own bone will make her recovery that much better. Thank you for all your prayers!! He is still working on the lower jaw, as it is a very tedious procedure. Praise  God for this wonderful news!! I will keep updating as I get calls.

4:30 - They are trimming and cutting the cadaver bones now to the correct sizes so they can be placed perfectly into Ellie's upper jaw. They said that Ellie's vital signs are staying stable and steady. Please continue to keep Ellie and this entire staff in your prayers. It's been over 7 hours now.

6:20 - They are still working on the lower jaw. It's been over 9 hours now. I'm ready to see our baby.

6:55 - Let's all pray for Dr. McKenna too. I can't imagine what he is going through working on her all day long like this!!! I'm grateful to God for blessing Dr McKenna with the ability to do this.

7:30 - She is out of surgery! Everything went perfect! He was so pleased and felt really good about it!!!!! She's in recovery now and we will get to go see her in about an hour. We are so happy to see her. Thank you for praying!!

11:50 - First let me say that we have so much to be thankful for. God answered our prayers and He guided Dr. McKenna and his staff today. You all don't know how much Stephen and I appreciate those of you who have prayed for Ellie and the staff today! We are so grateful.
Okay so over 10 hours is a very long time to be in surgery. She was able to wake up pretty well. She would doze in and out. She wrote us notes. She asked for H2O (as she wrote it), she asked for a soft blanket; and asked for a pillow under her legs; and asked why they didn't take her bone from her hip. We explained to her it was because she had such good strong bones and Dr. McKenna was able to get them so stable. Then I made a joke saying that all that junk food and chocolate eating has really paid off for her. She's not really in the mood for humor. :) She got very wide eyed when she realized where the bone came from.. But I tried to just skim over that and I reminded her that she now will be able to walk up that hill at the cabin. I know that made her happy even though she fell back asleep as I was saying that.
She has been amazing and such a strong brave girl! She will wave her hand to say "hi" as the new nurses introduce themselves. When she asks for something and the nurse gets it, we can hear a mumble of "thank you".
She has a pain pump. She has used it 3 times since she got to her room which is pretty good considering she can have it every 7 minutes if she wants. She also has a suction tube that she uses to remove saliva from her mouth. She is doing it by herself. She also has drank water tonight! She uses a syringe that is attached to a soft tube. She probably drank what might be equivalent to a small cup of water. This is wonderful. They have to keep her nasal passages clear so she also has a humidifier tube that she keeps blowing in her face. She has nose sprays as well. She has to keep that nose clear as it is her source of breathing for a while.
Her lips are very swollen. Her face is swollen too but it's really not as bad as I thought it would be. They say that the swelling peaks day 3-5 so I assume hers will hit later. And she has no bruising!!
We are thankful and grateful tonight. Thankful that she was in good hands today both God and her surgeon. Dr McKenna never took a break. He never stopped working on her. Wow - is all I can say. I can't imagine. Thank you to each and every one of you who have been praying. Please continue to pray for Ellie!

Prayer Requests

Ellie and I decided to blog about her jaw surgery and recovery. I have read many blogs from others having jaw surgery and have found many of them helpful. So, maybe, we can also be helpful to someone down the road, that is also facing jaw surgery. 

I wanted to reach out and ask you to please add Ellie to your prayer list. As you may know, Ellie is scheduled for orthognathic surgery at Vanderbilt Children's Hospital on Tuesday, May 20th. She will be undergoing an 8+ hour in-depth procedure where they will breaking her lower jaw (Sagittal Split Osteotomy) & cutting her upper jaw (Le Fort Osteotomy) then will be harvesting bone from her pelvic (hip) to place in her upper jaw. This is to correct her overbite, cross-bite and align her jaws properly.  She will then be on a liquid/soft foods only diet for 6+ weeks while she is wired/banded shut. She will also come home using a walker - because of the healing of the pelvic bone and to decrease the chance of falling.  I ask that you pray specifically for the following...
• Pray for God's hand over the whole process, and for Ellie to feel His peace throughout this process. 

• Pray for the surgeons and staff that will be caring for Ellie. 

• Pray they will make the best decisions leading to the most favorable outcome for Ellie.

• Pray for no complications, infections or blood transfusions during or after surgery. 

• Pray for her pain to be under control and tolerable. 

• Pray that her nausea is minimal or preferably non-existent

• Pray for her recovery to be remarkably fast. 

• Pray for her weight loss not to be extreme and that when she is able to eat again she gains weight back quickly.

• Pray that after the surgery she does not fall or has any injuries that affects her jaw or pelvic bone. 

• Pray that her determined, fun, always on-the-go personality will shine through and help her recover faster. 

I can't thank you enough for keeping us all in your prayers in these coming weeks. As a Mom, this means the world to me knowing others are lifting Ellie up to our Heavenly Father, the greatest physician. I'll keep you posted.

Love, 

Michelle 

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