Hair washing and bandage change

I'll be really glad when the head sock thing can come off. One tip - if you have to wear a bandage like this, invest in some spirit gum. It's a skin-friendly adhesive that you can buy from a costume store - it's what they use in plays and such to put on fake mustaches and whatnot. Not perfect, but it does help.

Kelley got a bath and a hairwashing last night. I'm pretty sure she had the dirtiest feet on the face of the earth. It went fairly well, but her hair was that knotted up mess again from the head bandage. John washed her hair in the sink and combed it out with the conditioner in it - that went better, actually. So, she's all clean, and the ear is starting to look better. The swelling has gone down a little, which was a big relief to us. It's nice to see that it's healing.

Kelley woke up in the middle of the night last night and got in bed with us - all four of us in the bed....and we swore that would never happen. Oh well. Sometime in the night, her head bandage came off, but her ear cup stayed on. It was a relief to see that her hair naturally falls in such a way that the part that was shaved will not show really while it's growing in.

That's all we have to report at the moment. The last picture is a sample of what our poor son Ryan gets to put up with. The pink things on his head are Kelley's Princess iPod (pretend) headphones. Her goofy sensibility is still in tact.

Cheers!

Pics - as promised.

Here's the pics that I mentioned yesterday. You can see that her stitches on her tummy are healing nicely, although it is kind of tough to see huge a huge long scar. I know with time it will fade, though. And they're doing such great stuff with scar revision these days if she ever comes to me and tells me that it bothers her, we'll look into it. (Joey...... :)

So, the first pic is right before we left the hotel and started heading home. Ryan was such a trooper through this whole thing - he just went with the flow. We discovered on this trip that he loves trucks. On the way home from San Diego, he was very fussy in the car - except when he could see a truck (commercial-type) on the freeway. It was pretty funny. "Aaah" stop. "AAAAHHHH" stop. "AAAAAHHHH!" Stop.

Not much else to report. Spring break is tough to keep Kelley occupied, but she's having fun with her TV and computer games, and if there's ever a time when you can indulge your kid with TV and computers, it's post surgery, huh?

For your reading pleasure - here is a link about the type of implant that Kelley received - her "new" ear is made of a medical-grade plastic called MedPor. (Eric Peterson, this one's for you.) http://www.porexsurgical.com/english/surgical/sprodauri.asp You can see by the picture that the product is shaped like the cartilage of your ear.

Cheers everyone.

One week post op today! And we're home!

Ok, we are one week post-op. Kelley's steri-strips on her tummy came off yesterday, and she hasn't had any trouble with them so far. She was quite curious last night about the stitches on her tummy, though. She wanted to know all about that yesterday - "What are stitches?" "How do they put them on me?" "Will they always be there?" Kind of hard to explain to a 4 year old, but she seemed to understand.

The doctor warned us that she would get swollen on her right cheek and under her eye, and sure enough, she did. It took a little longer than we thought it would, but it doesn't seem to be slowing her down. She looks a little like she has a healing black eye. We will be changing out her bandage again on Thursday, so I should be able to get pictures of her post-op ear then.

The flight home Sunday was uneventful, and we are home. The lines at LAX were unreal, but we got there in plenty of time. Several people that were in the line with us missed their flights because from curb to gate was over an hour. It was CRAZY.

A special thanks goes out to Kevin Corcoran for driving us to and home from the airport, and to Kristin and Julie. I cannot tell you how awesome it was to come home to a clean, picked up house. I'm utterly and totally embarrassed at how messy it was, but you both know me well enough to know that my house never really gets "clean."

And what a strange place Los Angeles is. Everything is "tagged" with gang graffiti. I thought this was a wierd place for 'tagging,' - a grocery store bathroom toilet seat. So, people are putting their butts down on the name of your gang and doing their business. Oh the irony.

We drove through Beverly Hills - the richie rich parts, or as my Dad refers to them - "Got Rocks Acres." We drove by a home that had about 2 million dollars worth of Ferrari's parked in front of it. I got a picture. Who lives like that? Dang! And...my last celebrity sighting - we're standing curbside at LAX, and I'm giving Kelley some pretty stern safety instructions - you know the kind - "Stay close, make sure you can always touch one of us, etc." I looked up and immediately to my right was Diana Ross, and her 'people.'

Anyway - it's good to home in a place where I can drink water out of a drinking fountain and not gag. Yay Portland. I'll be posting current pics as soon as I can.

big warning - yucky pics ahead.....

Ain't gonna lie. Today was not easy. We went to Children's Hospital LA to haver Kelley's bandages changed out and her suction catheters removed. Removing the catheters was painful for her, but honestly washing and combing her hair was worse.

First of all we got to the clinic and waited for more than an hour. Kelley didn't mind, because it was a cool kids waiting room, but still! Anyway - they called us back, removed her head sock, and you can see by the medusa picture that her hair was a total disaster.

Dr. Reinisch removed the suction catheters and it scared her and it hurt, so she cried a little. They had a TV in the exam room and she was soon distracted by The Fox and the Hound.

Nurse Pam washed her hair, and when John started combing it out she got really scared. I mean real, deep, fear. She kept begging him not to comb the hair on the side of the surgery. Nurse Pam brought her a Fairytopia Barbie, and she was happy about it, but still really freaked. Her hair was a matted mess, and was still super tangled after washing and conditioning, so it was a tough stretch.

We succeeded (Rather, John succeeded. What a man.) and she got a new head sock, much to everyone's dismay. It's a pain in the butt. She has to wear it with the ear cup for 2 more weeks at least, and it makes her itch so bad we're in for a long stretch I'm afraid. We are going to have to change it ourselves next week. Bummer.

So, the picture you see of her ear is pretty gruesome, I know. Right now, it is very swollen and is standing away from her head quite a bit. The swelling will subside over the next few weeks, and as it heals will start to pull closer to her head. They did have to cut a large section of her hair, and that was in order to access a piece of the anatomy called the fascia. It's what gave her new ear it's blood supply. The site on her tummy was to give her skin behind her ear - they wanted to try to match the color on the outside of the ear from the skin behind it, and needed to replace that skin with skin from her tummy.

We let her choose where she wanted to go for lunch, and she chose "Grape House" aka Olive Garden.

We had a but of a scare this evening as when we got back to the hotel she started getting a fever. We gave her an extra dose of antibiotic and some Tylenol and the fever broke. Phew!

We are headed home tomorrow and should be back at the house in the early evening. Thank you all so much reading and for your support. It means so much to us.

Warning about the pics - might be a little yucky....

Sorry for no word yesterday - a few members of the family like the computer. (John. Kelley. Talking to you both.)

Anyway - yesterday we ended up laying low again. As you can see by the pictures, the marcaine pump removal kind of sucked. Kelley was scared (I sure would be) but we tried to play it down. Papa Gene first pulled off the sitcky saran-wrap like stuff that was covering the pump site and her graft donor site. (Her poor little belly button was squished.) Then she started complaining that she had to go to the bathroom. Of course. The worst possible timing in the world. So, my dad - Papa Gene - got everything ready and then pulled the pump catheter out of her tummy. The tears came. Mine would have too. But, the good news is, she didn't cry for very long. We've had hair combing meltdown sessions that lasted longer.

Unfortunately, at this point, the itchies started. Where her head wrap is, the stretchy stuff covering her head in the pictures, are causing her horrible itchies. Her hair is coming out of it and is a total knot. Last night (Thursday) was pretty rough, because she was thrashing about and at one point woke up crying because her head itched so bad.

We got up early this morning and took a road trip to the San Diego Zoo. Awesome zoo. I am in the process of uploading the pictures - along with the Disneyland pics - to a picture site. I'll post the link as soon as I decide where. Kelley did really well today. Her choice of fashion wasn't exactly what I would have chosen (A button-down boys shirt and her Sleeping Beauty nightgown. Yes, nightgown. ) That, coupled with her post-op bandages and the pink safari hat we bought her - lots of looks. Oh well. Screw em. My kid's happy, she thinks she looked fabulous, and she had a good time.

That's an interesting thing, actually - having your child be the object of looks and the "I'm looking but I'm trying really hard not to look but I just can't help it" thought process - mostly by adults. I really appreciated one mom at the zoo today who asked. She said "Did she have brain surgery?" I was given the opportunity to briefly explain why she had a head bandage on. I was grateful. I'd rather explain than try to ignore the people openly staring at my daughter.

More thoughts on Beverly Hills - the Police drive Mercedes M-Class cruisers. Wha? We stopped in a children's store called Bellini. I could buy an outfit for Ryan (4 months old!) for $68.00. It was a t-shirt and pants. John and I got a grown-up dinner last night (thanks Grammy & Papa!) and noticed a woman with her children and the nanny getting in the car. The woman made the nanny sit in the back! Jeez!

Anyway - tomorrow Kelley is getting her dressings changed, and Dr. Reinisch is going to wash her hair. All of us are excited about that. I will post pics and an update tomorrow. We are heading home on Sunday and will be back at the house in the early evening.

Thanks for reading.

Update on day 2

Thought I'd show off a picture of our princess with a princess. We took that picture this weekend at Kelley's Princess Luncheon at Ariel's Grotto.

First off, thank you guys for all your nice comments. It's nice to know that you are reading.

Today we layed low. Kelley got tired around Noon, and took a lengthy nap this afternoon. She had some pain in the late afternoon - enough to really slow her down post-nap. She hung out and watched Scooby Doo, then a little bit of Mary Poppins. We gave her some medicine and now she's back to her old self.

Her head bandage is starting to itch, so I'm sure it's going to be an interesting few days trying to keep her from itching too much. Other than that, she's doing quite well.

Tomorrow will be possibly tough - we are removing her marcaine drip and bandages from her graft donor site. Thankfully my Dad - Papa Gene - will be here to help with that. Say a little prayer if you think of it. It looks like it might be a little scary for her. (and us!)

So, a few comments about where we are staying - Beverly Hills. What a wierd place. So completely removed from any sort of anything looking like reality. When John and I walked to the pharmacy to pick up Kelley's antibiotic, we witnessed a car accident between a new truck and an extremely expensive Mercedes. John thought the car was worth about $80,000. It was crunched up but good, too. It was surreal.

We see a lot of extremely expensive cars, extremely skinny people with fake tans, and a surprisingly diverse population. I expected Beverly Hills to be lily-white. It's not.

I've had my second celebrity sighting - my parents and I went to pick up some dinner at this fast-food-ish place called Koo Koo Roo - really good, by the way - and we walked by some kind of premier or party at a store on Beverly Drive. I saw an E! News van, lots of the above mentioned skinny people with lots of make-up on and fake tans, and when we walked by with our food, I walked by Ian Ziering from 90210. He smelled pretty good. :)

More to follow. Thanks for reading!

She's baaaaccckkkkk.....

We had an ok night last night. John snuggled with her in the sofa bed last night so that he could take care of her and make certain that she didn't roll over on to her surgery site. I took Ryan duty. She woke up at about 1 am crying in pain. We were nervous to give her any pain relief before she fell asleep earlier in the night because Tylenol with Codeine can exacerbate nausea, and we wanted to make sure that she got hydrated first. So, she woke up crying and scared because she was hurting, and the intubation from the surgery yesterday had irritated her throat so she couldn't breathe real well - her throat hurt. John and I got up, gave her a cracker and some water, and then gave her the pain meds. she fell asleep a little while later, and this morning....voila! She's back to her old self.

In fact, we're already having to try to keep her from running around all over the place. I've bribed her with dessert. Everytime she runs or jumps, she has to wait 10 more minutes for a treat. Not the healthiest, but hey - you do what you have to do, right?

So, we are laying low in the hotel today, doing laundry. Between the Spit Up King himself and Kelley's pukey episodes, we have a few things to wash around here.

I took a few pics of her today - some close ups of her suctions - called Jackson-Pratt suction catheters - and her skin graft site. This was apparently a muscle graft, which is fairly deep. It provided her surgery site with enough blood vessels to give the prosthesis a blood supply.

Thank you again for all your thoughts and prayers.

The really sucky part....

Post-op sucks.

Kelley went to recovery at a little bit after 2:30, and she woke up almost immediately after arriving in the recovery room. The tough part is that she opened her eyes and started crying that she was hurting. I almost lost it. The nurse, Sara, was wonderful, and gave her a little more pain relief. She drifted off a little bit and a few minutes later woke up again asking for something to drink. She was allowed ice chips initially, and we slowly started giving her some sips of water during her recovery.

Sara, our recovery nurse, was very kind and helpful, and to make her smile she blew up a glove and drew a princess face on it - it's really cute.

She was quite woozy, but after some water and some time, we got her up and went back to the hotel.

Of course, Ryan starts freaking out at this point for a snack (mommy's on duty), and so we had a lovely ride back to the hotel with one kid screaming and crying for food and the other one of the verge of throwing up. Poor girl, she was totally green.

We've had trouble tonight with her keeping food down. She's thrown up nearly everything we've given, and has only started keeping food down in since about 8:15 or so. She's sleeping right now.

As you can see by the pictures, she has a large sock-type headband bandage on, and it is keeping an ear cup that protects her new ear in place. She has two suctions coming away from the surgery site to keep the fluid from collecting around the site. We have to drain it occasionally. (Not for the faint hearted.) She also has a marcaine pump attached to her muscle graft site on her stomach (where they took the graft from). Marcaine is a topical anesthetic and it is keeping her tummy skin comfortable. She will wear the pump for two days.

She's such a trooper. She was sitting on the couch tonight watching The Little Mermaid (we completely reinforced the Princess obsession this last weekend) and while she was feeling really sick she said "Mommy, I don't like this surgery." I asked her why and she said "I don't know, I'm just sad. This doesn't feel very good." But she rallied and her spirits perked up until she finally drifted off to sleep at around 9:15.

The good news is, that the surgery went very smoothly, and Dr. Reinisch was cautiously optimistic that we wouldn't have to have a second surgery for refinement. That remains to be seen, however, but we certainly hope that is the case.

Thanks again, everyone!

We're waiting.....

Everything went smoothly this morning. We had to be at the surgery center at 6:00 am. Those of you who know me understand the pain involved in that for me, but I was anxious enough that it was a tad easier than any random Tuesday.

We arrived, got settled, and surprisingly enough, at 6:15 in the morning had our first Beverly Hills celebrity sighting. Anyone remember Craig T. Nelson from Coach & Poltergeist? He was there this morning with his wife having a procedure done. I was filling out paperwork at the same time.

At any rate - Kelley played in the kid's area (smart!) until they called us back, where she layed down and got some "milk of amnesia" - Verced. She has had this before, and she is quite humorous once it hits. I really hope this isn't a preview of the teenage years and college functions. She giggles, slurs her words, tries to talk and we can't understand her - she's very funny. The anesthesiologist, Dr. Jumper, was wonderful. He established a rapport with her right away and made her giggle, talked to her about Princesses (the Disney Post will follow shortly) and made us all feel comfortable.

When it was almost time for her to be taken back to the O.R., she asked me to snuggle with her. Of course I complied. It seems like everyday she gets a little bigger and a little more mature, and so I really want to take advantage of those times when she needs her mommy.

Even in her groggy state, she wanted Ryan to take a ride with her in the gurney - so he rode with her, she hugged Ryan and kissed him, and then she was taken back to the O.R.

And now we wait. It will be probably later in the afternoon before we can take her back to the hotel. More to follow!

Thank you all so much for your thoughts and prayers. We are doing ok while we wait, trying to keep busy.

Some background while you're waiting......

This is Kelley's "before" picture:

This is commonly referred to as Grade III - a rather severe manifestation of the birth defect. (Called Atresia/Microtia http://en.wikipedia.org/wiki/Aural_atresia )
This particular birth defect can be indicative of other syndromes - Treacher-Collins Syndrome http://en.wikipedia.org/wiki/Treacher_Collins_Syndrome )
and Hemifacial Microsomia ( http://en.wikipedia.org/wiki/Hemifacial_Microsomia ) and Goldenhar Syndrome: ( http://en.wikipedia.org/wiki/Goldenhar_syndrome )

Fortunately, we determined that Kelley's incidence of Atresia/Microtia seemed to be isolated - a random developmental event in utero that caused her ear not to form quite correctly. We feel very fortunate that Kelley was born with her inner ear anatomy - auditory nerve, cochlea, etc all in good function. Her ability to hear on her right side was given to her via a procedure called a canalplasty in July 2006. Her surgeon's name was Joseph Roberson of California Ear Institute in Palo Alto, California. I love these people. Please support them....they have a non-profit branch that brings this awesome surgery to children in countries where medical care is difficult to obtain, and to children in this country who may not have insurance, or are denied the surgery by their insurance carrier: http://www.californiaearinstitute.com/ and http://www.letthemhear.org/

Ok, done plugging.

So, we have been anticipating these surgeries since Kelley's birth, and after meeting with doctor's in Portland, I stumbled on a Yahoo message board comprised of parents and individuals who are managing this condition. It was a wonderful connection to make because it has led us to these wonderful doctors. We are currently in Los Angeles seeing Dr. John Reinisch, a reconstructive surgeon who, as we speak, is performing surgery on Kelley to give her a new ear. Here's all about him and his work: http://www.hopeforkids.com/body_microtia.html

Here we go!

Welcome to Kelley's blog! This is to keep everyone in touch while we are in California seeing Dr. Reinisch for Kelley's cool, cutting-edge ear reconstruction. We're so grateful for all the love, support, and prayers we have received. We wanted to create a way to keep everyone up to date on what's happening, so voila! Blog.

Kelley was born with a birth defect called Atresia/Microtia, where she was born without an ear canal, and without an outer ear. In July 2006, at the age of 3, we travelled to Palo Alto, CA where an awesome place called the California Ear Institute and a wonderful surgeon named Joseph Roberson performed something called a canalplasty. Shortly after this surgery, she could truly hear out of her right ear for the first time in her life. Exciting stuff.

Now, we are headed to the Los Angeles area to see a man named John Reinisch, of Children's Hospital Los Angeles. Kelley will be receiving something called a Medpor Implant, which will create an outer ear for her. This part of your anatomy is called a pinna. Traditionally, this reconstruction has taken place with a surgery called rib graft - where a part of your own rib cartilage is used to construct the outer ear. With Medpor, this invasive surgery is no longer necessary, and the child has a shorter recovery. We were keenly interested in providing this for her, as the idea of having to surgically open up her chest and take out some of her rib cartilage gave us what I call that "uh oh" feeling. Thankfully, through the Atresia/Microtia Yahoo! message board group, we connected with other parents and subsequently other surgical possibilities.

So, here we are! We are leaving in the morning on March 16th, and this weekend we are taking a little side trip to Disneyland, where my princess gets to meet some princesses (she's a *tad* obsessed with them. This is going to be the highlight of her little life so far.)