Tuesday, December 30, 2008

One more on Dr. Jones

In looking for a picture and bio on Jordan's surgeon I found this article. We are so blessed and so thankful for the care Jordan recieves. I wanted to include his picture and tell you about him so that as you pray for Jordan you would pray for him. Each upcoming surgery I will plan to do this. I love praying for her doctors even beyond their time in the operating room with Jordan. I pray that they would be saved and that we would have some lasting influence on their salvation. Thanks for praying with us.

(OC Register)
Surgeon who turns toes into fingers joins UCI

July 23rd, 2008, 12:00 am · posted by Gary Robbins, science writer-editor

An award-winning microsurgeon who helped pioneer the process of turning patient’s toes into thumbs and fingers so they could overcome injury or deformity is joining UC Irvine as director of the university’s new Center for Hand and Upper Extremity Surgery.

Neil Jones was recruited from UCLA, where he created a similar center that became known worldwide for reconstructive microsurgery that’s done on hands, elbows, shoulders and wrists.

The 59-year-old Jones is one of the few surgeons in the world who has performed several hundred “toe-to-hand” transfers, and is regarded in the medical community as something of a wizard in treating very small children.

“Their blood vessels and nerves are so tiny you must wait until the child is large enough for you to join the vessels and use sutures,” says the Oxford-educated Jones, who has been listed in the Best Doctors in America database since 1992. The sutures are thinner than a human hair.

This photograph shows the hand of a 2-year-old boy who originally was missing four fingers and a thumb. Jones took two “second toes” — the ones next to the great toe — and constructed a thumb and a finger on the child’s hand so that he could “pinch and grasp.” (Click image to enlarge.)

“When you look at the patient’s foot you can’t tell there is anything abnormal other than the scar,” says Jones, whose operations take eight to 12 hours. Typically, the nerves grow back and the patient has very good sensation in his or her hand.

Jones also performs toe-to-hand transfers on adults. His patients have included everyone from a girl who went on to become a top gymnast to a young boy who is gaining a sense of normalcy after Jones transferred a toe to the child’s hand to serve as a finger.

“His mother said he was able to ride his tricycle and feed himself,” Jones says. “It’s hard to describe the feeling you get from that.”

Jones also treats other type of hand injuries and disorders, and his patients have included many celebrities, including actor Brad Pitt. He will work out of UCI Medical Center in Orange and is expected to expand his practice to Children’s Hospital of Orange County.

Latest with Dr. Jones

Today Jordan and I met with Dr. Jones. We love every one of our surgeons but I think I have to say Dr. Jones may be my favorite. He's British so he's a bit stoic but every once in a while you see a crack of a smile and a really sweet man behind that surgeon's mask. For any of you who have dealt extensively with surgeons you know they are their own breed. They are like machines, so highly skilled in such a specific area or expertise that there is hardly anything else - at least from the patient's perspective. I often find myself wondering what they are like at home with their wives and children and grandchildren. We are one of many patients to them but to us they are part of our story, part of our lives and the ones who are helping Jordan so much. They mean a lot to us. I often find myself vowing to crack the surgeons, to make them smile and show warmth and even laugh. With our sitution we've had the same surgeons for a while now for multiple surgeries so we get to see them fairly regularly. A while back I asked Dr. Jones to separate Jordan's toes (they were webbed together). He said there was no need, they were fully functional the way they were. I explained that while he is merely concerned with function I, the mother of my daughter, am concerned with form. He told me that they'd just grow back together anyway. I begged him to "humor me" and do it since it would only be a few extra minutes and a little snipping here and there. He actually chuckled a bit and agreed to do it but insisted they'd grow back. We are more than one year out from the surgery and every single time we see him he peeks at her toes to see if they've grown back together and every time I say "Ha! You might as well stop looking, it's been long enough and they have yet to grow back." I even jokingly told him once that he needed to say out loud, "Jennifer you were right. Her toes look wonderful and they indeed have not grown back." Today, as usual, I went to our appt with the plan of attack to make Dr. Jones smile. I didn't have to work very hard though because Jordan put on quite the show. As we were heading back to the room Jordan was marching herself down the hall (she gets quite full of herself when she has her pig tails in and now that she's even peeing in the potty she's larger than life). Dr. Jones didn't notice her and ran into her. She looked up at him with recognition and a look or horror on her face. She stared up at him as she stumbled around him and realized I was heading for a patient room and she started screaming "No Dr. Jones!!! No Dr. Jones!!!! Noooooooo!!!!" It was the funniest thing ever and guess what - it made Dr. Jones laugh a bit. She is so fearful of doctors now that we can hardly get her in the room much less near anyone in a white coat. She eventually warmed up to him today and did fine and we had a very nice visit with him.

Our appt was to discuss her next surgery. Here's a recap:
--- He will take bone from her fibia (outer, lower leg bone) and will pin it to the existing bone in her short/floppy thumb to make it a little longer and more stable. It won't bend but it will give her a pincer grasp on that hand, which she does not have currently.
--- The surgery, amazingly, will be outpatient unless there is a pain management issue. The surgery will probably be at CHOC and will be around six weeks from now.
--- She will have a cast on her leg and a cast on her arm. Ideally she'd have a splint of some sort to immobilize the thumb and protect the pins but the last time she had a hand/arm cast she got it off twice so he thinks she'll need a cast up above her elbow. Yes, another leg cast and an arm cast all at the same time - three weeks after getting her current leg cast off. YIKES.
--- If I'm understanding correctly, the leg cast would be on for six weeks and the hand/arm cast will be on for 6 weeks up to 3 months (same as the current leg cast - I guess three months is typical for a pin). This will be good timing so she will not spend the summer in casts. She'd be done by mid Spring.
--- A tough decision we need to make is which leg to take bone from. Shan and I really want it taken from the right leg since she already has so many scars on that one but I'm not sure what they'll say since she is supposed to be in a brace on her right foot for six months and also taking into consideration the fact that her right leg just came out of a three month cast. They may want to give that leg a break and use the left.

Okay a ton of details but I like putting it all on here so if anyone is curious you can go back and read it. It also helps me put things down clearly so it's together in my mind.

I am dying to post on our current potty training with Jordan but I just haven't had a chance. I plan to do it tomorrow or the next day so check back when you can. She's doing surprisingly well and I'm so thankful. She only had a few accidents all day today but she is really getting so much better.

Thanks for checking in - Happy New Year!

Saturday, December 13, 2008

Friday, December 12, 2008

Surgery Follow-Up Pictures - preview before showing your kids

I am finally able to post a few shots of the new foot. I know that some people may have a hard time looking at them. I was hesitant to put these pictures on here and went back and forth but really thought that more than a few might find it interesting and no one who knows us has even been able to see this pin I'm talking about because it's covered by the cast. It is truly amazing to me that it is just sticking out of her foot. Weird huh? I have had a surprising amount of people offering to take the pin out...actually I've had many people offering someone else to take it out...Jenny Weber offered her brother's services (he's a general practitioner), Lindsey Veale suggested Darin Johnson (a surgical nurse), Tobi Thomas suggested her dad who is a firefighter, Sarah Cox suggested her husband because he's really good at medical things and my dad was at first saying he could probably do it until he saw the pictures. He has now offered to meet me there so he can be the one to go in with her when the doctor does it rather than me. We've decided that would probably be best. Shannon thinks it would be no problem to have someone take it out but I'm a little more nervous. He says he's fine with whatever. So the 23rd it is - my dad will meet us in L.A. early so we can have breakfast in their wonderful cafeteria (truly it's so nice, we love eating there) and then we'll go upstairs. I guess my dad will take her in and hold her while I wait outside. I'm so torn because I am abandoning her but at the same time I really have drawn this mental line and feel totally unable to do it. I'm being lame, I know. Regardless, I'm looking forward to breakfast with my dad and it'll be nice to have him help.

Outside the doctor's office with her new cast.
I thank God all the time for his answer to my (MANY) prayers begging Him to work out the details for us to go to UCLA. We love it and have SUCH confidence in her care there (keeping in mind that God is the ultimate surgeon and the one who decides every detail of every surgery - talk about being in good hands!!!).

Here's that nasty pin. Next poll I'm taking is whether or not I should keep it in her keepsake box...??? Any thoughts?? Hey - most parents keep their kids teeth right? Not that different.

What a long morning! She was out cold in the car. We left home at 5:45 and didn't get back home until 5:30 that night. We had so much going on that day with appointments and things that it was SUCH a long day for both of us.
I love this picture - look at her pretty lips. Her surgeon did a great job on her lip it is so full and beautiful!

This is the bigget scar from this surgery. It goes up pretty high. I was really surprised but glad I didn't know before hand. I am really amazed at the fact that her foot now has an arch to it. Where you can see an arch there she used to have a rounded bottom like a rocking chair (hence the term Rocker Bottom Foot). Her foot looks so much better. She still has a lot of fatty tissue and if that doesn't go down her plastic surgeon said he would want to lipo it out during her next face surgery (around her third birthday). You know you live in Orange County when...your three year old gets liposuction! Ha. That's funny. The extra tissue/fat on the foot will make it possible for her to comfortably wear the same size shoes and also it will help make her foot look more "normal." We are not obsessed by that but want to do what we can for her and it sounds pretty non-invasive, minor in the scheme of things.

Tuesday, December 09, 2008

Brief Update

I am having some major technical challenges trying to get this blog post done. I am unable to post pictures right now because of our issues. Sorry - check back tomorrow night for some hopefully.

I am so tired and still have a few things to do before going to bed so I'll make it short.

My dear friend, Sarah Cox, took such great care of Noah for us while we went. She had him over last night for his first "sleepover" and then kept him all day today even while she wasn't feeling well. (Much more on this story later) It was weird going to an appt without Noah and really reminded me that he is carted around with us on appts constantly. What a champ! Jordan was sad without him today and confused. She kept looking over where his car seat usually is and saying, "Noah? No Noah? Noah sleeping Ivy's house? Why?"

Our appt was at 8:30 but I thought it was at 8:15 so I planned to get there by 8:00. We left at 5:45 and hit no traffic, making it in record time (other than our surgery trip at 3:00 a.m.). Jordan and I got there at 7:00 sharp. We ate donuts and I had Starbucks in the cafeteria. It's a familiar place and I actually love going there. We had a really fun morning. We chatted in the waiting room with other families who are so thankful for Dr. Oppenheim.

I will preface this by telling you that Jordan is TOTALLY freaked out by doctors and nurses. This is the understatement of the year. The nurse tries to take her temp at the pediatrician's office and Jordan screams as though she is being burned alive - honestly. It scares people but I don't know how to stop her from freaking out. Imagine when the guy today turned on the saw. You can imagine the blood curdling scream. The guy almost dropped the saw. I'm serious. He closed the door and started to cut the cast and she was shoving at him, clawing at me, screaming, and I'm starting to freak out wondering if it's really hurting her. He says no but by her fighting I wasn't so sure. It took all I had to hold her down. We were all out of breath by the end. Then he can't get it off so he has to use these giant clamp scissor things to pry it open. She's starts up again. Then when I saw what it looked like I had one of those moments where you know that you have two choices - snap out of it and get it together or lose it completely. I am really very strong with this stuff and have no problem usually holding her down etc. It's for the greater good so it's worth it to me. Today was different somehow. I really almost said, "Forget it. We're coming back when someone else can do this because I'm done." I asked the resident if someone else could hold her leg when they take the pin out and this guy (younger than me probably with no kids) looked at me like I was being dramatic. The doctor decided to x-ray before taking the pin out. Yet another thing Jordan "loves." It took two x-ray techs and me to hold her down for that one. We all came out sweating and everyone was staring at us (docs and staff). The doctor came in and said that the surgery results weren't as good as he would like but he does see improvement (BIG bummer!). The x-ray before surgery looks close to the same as now to me but she for sure has an arch to her foot now that she didn't have before. He didn't seem all that pleased but was pointing out the positives (the foot arch and a small improvement in one of the bones). Either way he did his best (which is darn good) and it needed to be done regardless of the outcome. He opted to put a short leg walking cast on but he left the pin in for two more weeks. He said that I can pull the pin out (yeah right) or I can make an appt for his resident to do it. He'll leave this short cast on for four weeks after that (total of six more weeks) then she'll wear a brace for six months. I really don't want to drive up there, wait 2 hours to see the resident to do something that can be done at home. It's totally not a big deal apparently. Everyone kept showing me how to loosen it and pull it out. The doc said to find someone to pull it out for me if I can't do it and don't want to come. He was chuckling that I thought he was crazy to think I could pull it out myself. Anyone want to give it a shot? Seriously? Two weeks from today we can take that sucker out. Let me know if you know anyone who would do it.

For some reason today was a challenge to me more than any other day, even surgery days. I think as she is getting older, responding more to pain, stress, etc. it's getting harder for me. It's easy to get discouraged as I look ahead to more and more surgeries. I feel so bad for her but there isn't anything I can do. It's tiring to hold her down again and again while she screams. After the cast removal (the saw part) today she was so freaked out and I was totally stressed so I started singing Jesus Loves You and reminding her of God's love for her and the fact that He never leaves us or forsakes us and that the proof of that love is shown in the sacrifice of his own son for us. I said, "Just think - if God loves us enough to take away our sins with his own boy don't you think he loves us enough to be with us when things are scary and hard?" As I was talking to her about God's love and his prescence and how thankful we were to be for all He does she totally calmed and not surprisingly so did I. I prayed with her and honestly the rest of the appt went pretty well. She let the cast guy (the saw man) put a new cast on her. Even though she was still freaked she didn't scream. He shut the doors just incase. :) :)

One really funny quick thing...as we were leaving the office we were strollering past the reception desk and Jordan said so loudly with such conviction, "THANK GOD!!!" A lady whipped her head around and said, "Did she just say what I think she said??!" I repeated Jordan, "Thank God." That woman was cracking up. The whole front office staff started laughing. Jordan was still pretty serious and really meant it - THANK GOD!!!! She was so glad to be leaving that office and I can't blame her.

She's not putting weight on her leg tonight and just cries saying it hurts. Pray for that. I have to get to bed but will post pics when I can.