Saturday, October 29, 2005

Day after surgery

Yesterday was a rough day. We got to the surgical center at 6:15 and everything started around 7 am. They gave him the versaid, which made him very loopy. He was so funny. Singing in a really high pitched voice waving Little Quack around and slurring his words. They then wheeled him off--fully dressed--I was surprised. We had to wait about 6 hours. A BIG thank you to Eileen who sent me the book of Sudoku puzzles. When I was just sitting there, I was a mess, but as long as I did the puzzles, I was able to keep my mind off things and be more calm. Brian's addicted to them now too.

They called us right to the recovery room as soon as he was wheeled there. He wasn't awake at first, but it didn't take long for him to at least appear to start waking up. The doctor said he wasn't really awake. It was probably the most awful thing I've ever experienced. It took 4 people to hold him down because he was thrashing around so much. He was crying and yelling "Stop that," over and over. They had to give him something in his IV to make him call down. I couldn't hold back the tears through it. Thankfully, he didn't see me crying and according to the dr., he won't remember any of that anyway. Later he woke up again more calm. We watched some Lion King and he eventually drank 4 apple juices(!). Here's what he looked like. The nurse made Little Quack look even more like him. He now has "cups" over his ears under the netting. He has a bandage on his belly, where Miles does (from one of the skin grafts). LQ's is much cooler though, because they cut it and drew on it to look like an elephant. He even has a little IV thing hanging off of his right "ear" that is kind of like the drains on Miles'.

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Miles has the cups on both ears under the netting. He has 2 drains on the right ear, which we need to empty every once in awhile. He has a bandage on the skin graft on his abdomen with a bulb like thing there too. It's a marcaine pump which releases pain medication to that area on a regular basis. We will have to remove that "catheter" like thing from the skin graft ourselves in a couple of days. Yikes!

Here is Miles coming home from the surgical center:

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Miles laid around for awhile after coming home, but by evening he was running around. It's unbelievable how these little guys recover. Here he is with brother Jack in the courtyard of our hotel. They were walking/running around the pool area.

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Last night was exhausting. We took turns staying up next to him to make sure he didn't roll on the right side or pull at any of the tubes. I didn't get much sleep.

Miles' left ear (the one they took the skin graft from) started bleeding through the cup and bandages last night, which worried us some. We took him into Dr. R. this morning, who changed the dressings, cups, and netting. It was absolutely awful again. It took 3 docs, a nurse, and Brian and I to hold him still to get it done. He kept screaming, "He's grabbing me," over and over. Afterwards he cried for a long time and kept saying, "Somebody hurt me," over and over. It just broke my heart. Here is a pic of the incision above the new ear (warning: kind of graphic). We didn't actually see the new ear. They just changed the cup and other dressings.

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Miles is doing much better now and currently watching "Bob the Builder," his favorite. Here is a pic of my little "teletubby."

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Friday, October 28, 2005

In surgery

We may be called to the recovery room any minute, so I'm typing as fast as I can. We just discovered there was a wi-fi here and we could log on. Here are some pics:

Mile at the pre-op yesterday with Nurse Pam who was showing him a head with the netting and one of the cups he will have. She also gave Little Quack some netting (no cups since he has no ears).

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Here's Mr. Jarhead with the cup and netting:

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Miles talking to Dr. Reinisch:

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The last pic of Miles' little ear ever:

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Miles waiting at the surgical specialty center this morning:

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Miles took this pic of Little Quack:

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Here we are talking to the dr. that is assisting Dr. R today. Miles is already loopy from the Versaid:

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Miles totally wasted:

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Okay, we called in after I posted that last picture (this was about 6 hours after that picture was taken), but I wanted to post a pic of him being wheeled into the OR. What an awful feeling for a parent.

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He made it thru the operation okay. It was horrendously stressful, not sure I'll even be able to describe, but I will try later and post some post op pics. Right now I need to take care of my baby and rest. All in all, everything is well.

Thanks for your prayers. We love you!

Friday, October 21, 2005

Would you like to help?

Write to your senators and congressmen asking them to support the following legislation:

Mike Ross of Arkansas has re-introduced the new-and-improved version of the Reconstructive Surgery Act. HR4022 will force group and individual insurance plans, managed care plans (HMOs), and self-insured plans, to cover reconstructive surgery for kids, teens and adults without age limitations.

For those of you living in a state where there is already a mandate, you should be aware that many plans are exempt from state law as states only regulate insurance companies; employer (self-insured) plans are not covered. HR4022 will close that loophole and amends ERISA to prevent companies from denying or delaying medically-necessary care and payment for same.

Complete details on HR4022, including a press release and media contact details, and a sample letter you can use to urge your elected officials to co-sponsor and support the bill are available at the Association of Independent Craniofacial Advocates (AICA) website. Information on the Treatment of Children's Deformities Act is also available at the AICA website.

Birth anomalies aren't the only reason patients require reconstructive surgery...car accidents, cancer, burns, disease...this legislation affects us all!

Please write to your senators and representatives, urging them to support this legislation. You can find out who your reps are at http://www.congress.org/congressorg/dbq/officials/?lvl=L. You can email them directly through that website.

A sample letter you can send follows:

Dear (rep's name),

As your constituent, I am writing to urge you to cosponsor The
Reconstructive Surgery Act (HR4022), introduced by Rep. Mike Ross of
Arkansas. Under this legislation, health insurance and managed care
companies will be forced to recognize that ongoing medical procedures
needed by cleft/craniofacial patients like my son are not cosmetic, but
are reconstructive in nature.

There has been much documentation of families and individuals having to
fight to receive the medically-necessary treatment and reconstructive
surgery needed to live a normal life.

I encourage you to research and cosponsor HR4022. This legislation is
designed to protect citizens from discrimination in health care. The
need for this initiative is far greater than you may think.

I look forward to hearing from you or your health care legislative
aide, and to seeing your name on the list of co-sponsors of HR4022.

Sincerely,

(Your Name)

Wednesday, October 19, 2005

Close up

Thanks to Grandma Sharon for providing this picture, which is a better close up of Miles' ear.

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Monday, October 17, 2005

A Little Background Information

Miles is 3 1/2 years old. When he was born, we were surprised to find that the ear on his right side looked kind of like it was folded over. We later found out that his condition is called microtia and atresia. "Microtia" literally means "little ear." Miles has grade III microtia, the most severe. His ear is just a little flap of skin; it kind of looks like a peanut. Here is a picture that shows what his ear looks like (a cute one of him kissing his baby brother):

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"Atresia" means that he has no ear canal. He does have an inner ear, but since there is no ear canal, he hears very little out of that ear. An operation called a canalplasty opens up ear canals, but we recently found out that he is not a candidate for that operation.

There are two types of surgical procedures commonly used to construct a new ear for children with microtia. The first, more traditional, type of surgery is called a "rib graft" surgery. In this procedure, the surgeon harvests cartilage from one of the patient's ribs and carves it to form the framework for the new ear. I believe that a skin graft for the new ear is usually taken from right above the patient's buttocks.

The second type of surgery is called a "medpor" surgery. In this procedure, the framework for the ear is made from a synthetic, polyethylene material called medpor. Skin for the front of the new ear is taken from the back of the other ear and skin for the back of both ears is taken from the lower abdomen.

We chose to do the latter type of surgery for the following reasons: 1) it requires (usually) only two surgeries, whereas the rib graft requires three or four, 2) it is less invasive, since no rib cartilage is harvested, 3) it does not require an overnight hospital stay, like the first rib graft surgery does, 4) it can be done at a younger age, since children do not have to be big enough to have enough rib cartilage, 5) medpor ears project out from the head like "normal" ears, whereas rib graft ears lie flat against the head.

We have chosen Dr. John Reinisch at Children's Hospital in Los Angeles to do the surgery. We chose him because he developed the procedure and is the most highly recommended doctor that does this procedure. Also, we have met a little boy who underwent surgery with Dr. Reinisch, and we were impressed with the results.

So, on October 27th we will be flying to LA to undergo surgery on the 28th. We will be there for several weeks (spending part of the time between appointments at my parent's retirement house in Mesa, AZ). There will be two post-op appointments after the surgery, and we will leave LA after the last one on November 11th.

Friday, October 14, 2005

Hello Friends

Welcome to Miles' California Trip. We will try to keep this up better than previous blogs.