We take so much for granted ...

Claire told me since she is not able to eat she has started to hallucinate and think a lot about food. Most of her day revolves around trying to feed herself. Either she or I will prepare her food but then it takes about 45 minutes just for her to eat it. Everything has to be thin enough to be sucked up into a syringe in order for her to eat and to get enough calories she has to eat all day long. She told me when you can not eat you start to think weird thoughts, she had imagined she was eating meat sauce, not spaghetti meat sauce but a sauce made out of meat. Tonight she so wanted chocolate that she was taking little pieces and trying to stuff them back in the opening where her feeding tube goes. She told me she wanted potato chips, so I tried to make it happened. I blended potato chips, water and salt...what an epic failure! I think I will end up losing weight because I feel guilty eating around her, it is like eating a chocolate cake in front of someone starving, it breaks my heart.

Post Op Pictures

One Day after surgery, there is already quite a difference in her profile, even with the swelling.











Today Claire is not feeling well, her stomach is bothering her, her face is still swollen but you can notice the difference in her jaw line.

Great alternative medicines!

When you are only eating a liquid diet it can really throw your digestive system in a turmoil. I would Highly recommend "Good Belly," it is a liquid probiotic drink. Probiotics have been found to improve core digestive health and support the immune system.

My second recommendation is Arnica cream. Arnica cream is a topical ointment made of an extract of the arnica plant. Native Americans began using it to relieve pain associated with the muscles. The active ingredients in arnica cream promote tissue healing, reduce swelling and inflammation, and ease pain. Claire's bruises on her face are almost completely gone and her swelling has gone way down.

Arnica is generally regarded as safe to use one to three times per day for up to seven to 10 days but long-term usage can cause some reactions, like redness, itching or blisters. If this occurs they are a sign that it's time to stop using the cream.

Claire’s jaw will be wired for 5-6 weeks. She has a splint between her wired teeth so that means she can only get food and liquids between the space behind her teeth where her wisdom teeth would be located if she still had them. She was told not to use a straw so what she uses is a syringe with a catheter tube attached to to the end.
When we went for her consultaion with the Doctor, he gave us a cook book titled "Dinner Through A Straw," some very interesting and scary recipes, like "Baked Fish Dinner"

4-6 OZ Orange Roughy Fish
1 large carrot, cooked tender
6 Broccoli Flowerets, cookeded tender with butter
1 can cream of mushroom soup

Bake the fish for 20 minutes then place everything in a blender and liquefy. YUCK!!!!

Claire is not that desperate yet! We found that the Bella Bullet Blender (basically a Magic Bullet but lot less money!) is awesome, this thing will puree anything!! This morning she had a glass of prune juice (Yuck), a glass of Sunny Delight and scrambled eggs cooked in butter with a brown and serve sausage...pureed. Last night she had pureed potato and leek soup and pureed broccoli and cheese.

The inside of my refrigerator is filled with juices, pureed soups, broths, puddings and anything else we can puree. We have learned that somethings just don't work no matter how much you try to thin them i.e.; cream of wheat and broccoli and cheese.

I am sure in a week or two she will be more adventuresome, we might be blending pizza or a Taco Bell cheesy potato burrito!

Pain Charts

Every time a nurse came into Claire's room they would ask Claire to look at a pain chart and tell them where she was at in her level of pain. A friend told me a story that when his daughter had shoulder surgery the nurse would ask her "on a scale of 1 being no pain and 10 being the worse pain you have ever felt in your life, where are you?" She would say 10 even-though she was on Morphine and had a big smile and was obviously not in 10 level pain. Then he realized the problem was the question, it was the worse pain she had ever felt!

Check out this more accurate, and graphic, pain chart made by Allie who blogs at Hyperbole and a Half. It's for those times when those pain charts with frowny to smiley faces just don't cut it.

You've probably seen some version of that chart before. You may also have noticed how inadequate it is at helping you. Based on the faces, this is my interpretation of the chart:

0: Haha! I'm not wearing any pants!

2: Awesome! Someone just offered me a free hot dog!

4: Huh. I never knew that about giraffes.

6: I'm sorry about your cat, but can we talk about something else now? I'm bored.

8: The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected and I am disappointed.

10: You hurt my feelings and now I'm crying!

None of that is medically useful and it doesn't even have all the numbers, so I made a better one with all the numbers:

0: Hi. I am not experiencing any pain at all. I don't know why I'm even here.

1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2: I probably just need a Band Aid.

3: This is distressing. I don't want this to be happening to me at all.

4: My pain is not fucking around.

5: Why is this happening to me??

6: Ow. Okay, my pain is super legit now.

7: I see Jesus coming for me and I'm scared.

8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.

9: I am almost definitely dying.

10: I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Day of Surgery

We arrived at St. Anne Mercy Hospital at 11:30 and everything went as planned except that in pre-op the nurse could not get Claire's IV started on the first try, that did not make Claire very happy. Claire was in good spirit, even joking that the cross over the door was to keep the vampires out!







Claire procedure went really well. She was 2 hours in surgery and 1 1/2 hours in recovery.
She woke up with no problems and was speaking right away (even thoughh we did not understand her right away). Claire joked that she had Angelina Jolie Lips! As you can see, her face is very swollen and she had an oxygen mask on to help give her some moist air but she was still giving a thumb's up!





Prior to moving Claire to the hospital room they connected a PCA Pump to her IV and she was on Morphine for the pain. I was able to spend the night with her because she had a private room with a pull-out couch (a very uncomfortable pull-out couch). Claire had some great nurses but one really stood out, her name was Kim. At first, Kim seemed a bit cold but by the time her shift ended we were sorry to see her go. Thank You Nurse Kim for all that you did!!

We had a bit of a rough night, the Morphine named after Morpheus the Roman God of sleep and dreams did not make Claire very sleepy!
Claire's Dad stayed until about 10 PM. Kim came in at about 10:45 and told Claire's she had to get some sleep. I think we were up about once an hour until 6:30 and then we just gave up and decided to just get up.

Tommorow is the Big Day!

Claire can not eat after midnight tonight, so I plan on letting her select whatever she wants to eat since it will be 5-6 weeks of no solid food. We need to be at the hospital by 11:30, surgery is scheduled for 1 PM and should last about two hours. After surgery she will go to recovery and then they will move her to a room where she will stay overnight. I will pick her up on Friday. Keep Claire in your prayers and send her lots of healing energy!

Plan B

Met with Claire's Surgeon on Monday. After reviewing her CAT Scan he has determined he can not perform the Sagittal Split Osteotomy because her jaw bone is too thin so he will now be doing a Intraoral Vertical Ramus Osteotomy (ivro). The difference between the two surgeries means for one thing she will be wired shut for 5 to 6 weeks BUT there is less likelihood of damage to the IAN nerve. Damage to the IAN nerve can cause permanent numbness and tingling of the lower lip and up to the middle of the chin.

So for the next 5-6 weeks Claire will be on a liquid diet, she will have to sleep in a lazy boy for two weeks and will have to learn to talk with her mouth wired shut.

Royal Bloodline? Hmmm....

Pathologic mandibular prognathism is a potentially disfiguring, genetic disorder where the lower jaw outgrows the upper, resulting in an extended chin.

The condition colloquially is known as Habsburg jaw, Habsburg lip or Austrian Lip due to its prevalence in that bloodline. The trait is easily traceable in portraits of Habsburg family members.

It is alleged to have been derived from Cymburgis of Masovia from the Masovian Piast Dynasty when she married into the Habsburgs and passed her protruding lip to her offspring. This would become a particular physical characteristic of most members of the Habsburg family for many generations until the 18th century. Not only did Cymburgis have a protruding lip, tradition has it that she was also known for her exceptional strength, which, for example, she showed by driving nails into the wall with her bare hands and cracking nuts between her fingers.

Traits such as mandibular prognathism that were common to royal families are believed to have been passed on and exaggerated over time through royal intermarriage which caused acute inbreeding. Due to the large amount of politically motivated intermarriage among Habsburgs, the dynasty was virtually unparalleled in the degree of its inbreeding. Charles II of Spain is said to have had the most pronounced case of the Habsburg jaw on record. His jaw was so deformed that he was unable to chew!

By the way, Marie Antoinette had abnormal prognathism and was considered to be quite beautiful!

So what the heck is a Sagittal Split Osteomy You might be asking!

Definition from Wikipedia: First, a horizontal cut is made on the inner side of the ramus mandibulae, extending anterally to the anterior portion of the ascending ramus. The cut is then made inferiorly on the ascending ramus to the descending ramus, extending to the lateral border of the mandible in the area between the first and second molar. At this time, a vertical cut is made extending inferior to the body of the mandible, to the inferior border of the mandible. All cuts are made into the middle of the bone, where bone marrow is present. Then, a chisel is inserted into the pre existing cuts and tapped gently in all areas to split the mandible of the left and right side. From here, the mandible can be moved either forwards or backwards. If sliding backwards, the distal segment must be trimmed to provide room in order to slide the mandible backwards. Lastly, the jaw is stabilized using stabilizing screws that are inserted extra-orally. The jaw is then wired shut for approximately 1-5 weeks.

Who is Claire?

Claire is my daughter, she will be 17 on July 28th 2010. On August 5, 2010 she will be undergoing Ortognathic (Jaw) Surgery. The procedure she will have is called a Sagital Split Osteomy to correct a condition in which her lower jaw outgrew her the upper jaw, resulting in an extended chin and under bite.

There are several reason I have created this blog. I wanted to document this procedure primarily for her sake, I am sure there will be times while Claire is healing she will wonder was this worth it. Perhaps, if she see the changes and progress being made she will be able to answer that question clearly. I wanted a place to post her progress for our friends and family. I also wanted to provide information to anyone contemplating this surgery in the future. Most of all, I did this because I love Claire!!