[Abdulina]

Cross posted from a yahoo group so hope you all don't mind. Here goes:

I'm writing this w/ a huge knot in my stomach at what I saw today and still am in shock somewhat. Won't bore you all w/ history. Make that part short. 7 special needs kids all internationally adopted.

August 3rd, two of mine had ortho surgery at the same time. Bojan is 8yo and had surgery on the tibia/fibula in regards to his congenital clubfoot. Both stayed overnight in the hospital. Won't go into detail w/ Bojan as he is fine. Alyona is also 8 and had surgery on her right forearm to give her more function as she had radial
articulation in that arm. She could not rotate it, couldn't really hold or throw anything either. I know w/ any surgery there is risk. Shoot, that's why we all sign those stack of papers--LOL. BUT, I also wanted reassurance we were making the right decision due to all her other issues. I mean, not being able to use it the right way was really limiting her on what she could do. Keep in mind, Alyona is also dx'd w/ FAS/ FTT(failure to thrive)/ delayed bone growth of two years/ microcephaly/ SI/ devel. delays/ holes in heart/ ONH(optic nerve hypoplasia)/ suspected dwarfism.

Anyhow, she went into surgery Aug. 3rd. Doc came out saying eveything was fine and they'd have Bojan back in a minute. Fantastic. Well, they never came and got Bojan so I knew something was not right. Sure enough, surgeon came back in and said her arm was not pinking up. So, he decided to go back in. Artery was
occluded on hte bone he'd broken and it was cutting off her blood supply. Assured it would be fine just more numbness in the beginning.

Next step was casting after the 10 days so that swelling would go down. They first took x-rays of both kids. When he held Alyona's up, I said why is it broken!? He said that is normal not to reset the bones that they will grow back together. I said even w/ all the other bone issues she has & that she hasn't physically grown in 3
years? He said yes. The one bone was broken completely in half. Take both your first fingers and touch vertically tip to tip. Seperate about an inch and move the bottom finger over to the right. That's how it looked on the x-ray. Again, assured it would heal fine and this is all normal. So, hard casted for 4 weeks.

Today was the day the casts were to come off. Yeah, I thought. Bojan, no trouble. Healed nicely and everything aligned. Okay, they took off Alyona's cast and the room was a "gasp" for words. Literally. My husband said that is broken! I knew too. The
radiologist was there to take her away for x-ray. However, the doc's assistant said " I think we need Mankin in here now." Mankin came in again saying it should be okay. Off to x-ray she went. Keep in mind, this chlid is fragile and only weighs 30lbs. Maybe 31 soaking wet==LOL. It was time to look at the x-rays. Even the doc said "now that's not what we want to see after surgery." Her arm is way worst than it was when we got her casted!!! BOTH bones are broken badly
and twisted. The metal plate holding it together broke as well. We knew then and there it went horribly wrong. She can not straighten out any of her fingers. Probably permanent nerve damage. We asked to have the cast put back on. Surgeon said no, he wants her to try to move it some and heal up a bit. Now, he knows the family situation at home. NOT conducive to healing as lots of rough-housing and acccidents happen. Remember, I have mostly severely mentally and
behaviorally challenged kids. We felt a cast would be safe for her. This bone is literally almost through the skin. Told she has to heal up some before he could even think of going back in. However, he thinks still it will heal. Agreed to allow her to have a brace. Not much protection as it is just this foamy thing. There is no meat on any of her bones remember. She is to go back in two weeks for another x-ray in hopes that it has healed up some. Given that it has gotten worse over the last few weeks, I don't htink it's going to happen. You can just tell there is something horribly wrong about
all this. I don't know how a metal plate could have broken. Even the PT's that fitted her w/ the brace looked concerned. No one wanted to say anything though. You could tell. I said w/t he plate broken is there risk of infection? He said no. Remember, she has
holes in her heart. So, I'm calling the cardiologist just to be sure. This is such a mess. What is supposed to have given her more use may have ultimately taken all usage away. I 'm distraught. Husband keeps telling me I didn't do it to her, the surgeon did. He knows he messed up. Next question will be, how will we ever fix it. It can't stay this way. --it is deformed. Not worried about the
look, just the fact she can't remain w/ broken bones. My husband thinks they'll end up having to do metal rods. Don't know and hope to know more in two weeks. I've talked about going to Duke for a second opinion. Right now, just too distraught to figure it all out. It is so close to being out of the skin, one bump and that's it. The plate is that close to the skin and you can feel it coming
up. Risk of infection again is high w/ a heart patient child. I'm worried on so may levels here.

I need advice, help, anything you can think of at this point. I don't know what to do. we are goign to think more clearly tomorrow but even then, don't know what on earth we will do. Thoughts and prayers are greatly appreciated at this point in time. She lives in an "unsafe" house in this particuliar situation. I mean these kids
love to run, chase each other, ride down the steep hillls on the skateboard and bikes, etc. And yes, she runs too. One fall though, and there is nothing to protect this fragile arm. How? How will she be protected in school too? VERY concerned. So sorry to carry on. Ideas on how to protect her from normal and not so normal
(RAD/FASetc.) play?

Thanks for listening and sorry for the long post. My faith in this doctor is lessening w/ every minute. especially, since he didn't believe me in the beginnning days after surgery when I said I think something went wrong. I was so hoping for a different outcome today. The guilt is just eating away. I swear I did this to help her be able to do more things. Had NO idea this was even possible. If you could have seen that x-ray today. You'd be speechless.
Doctor added it's impossible for it not to heal up. My husband kindly reminded him we are living w/ many "impossible" medical situations w/ our kids that became possible!

Anyonw out there that has any clue, let me know. Have a great weekend. I've got a slumber party w/ 15 girls...yikes!!! Again, how to keep her not getting bumped from dancing and such.

Take care,

[linda512]

I am so sorry to hear about this. I have been lurking and following your story. I am a pediatrician and think you should absolutely get a second opinion as fast as possible. If there is any chance of reversing the nerve damage, time is important. If you don't trust this doctor, find someone you do. I am sure Duke has some good pediatric orthopedists.
I am so sorry. How awful for you and your daughter.
I know you feel guilty and understand that, but try to give yourself a break. You are trying to give her the best life and the most opportunities. A professional told you this would help her. It's not your fault that there were complications. Your intentions were good and we can't always control outcome. You make the best choices you can based on all available information.

[momraine]

Number one, Stepnanie my friend, you know that I have been where you are, you know how much we have in common *(though don't think I have told you how many issues we are having with M, major behavioral and attachment issues and food issues, we go to talk to a developmental ped, on Monday about a tube) Anyway, it's NOT your fault, you are an awesome, awesome mom. You are doing great. I will also second what Linda said (welcome to the board Linda!) Go get a second opinion right away, get another surgeon or ortho doc to look at it, preferably at a different hospital. Call them, ask to speak to thier nurse, tell them it's an emergency and tell them the story. If you have to also put it in writing and get it to them do it. Bug the new doc until he will see her. She needs to be seen now! I wish you could come here and see our doc, he is awesome! Wanna fly to Texas? You can stay with me! LOL
Let us know what happens. We love you!
Lorraine

[mrsred]

I have no ideas or advice, but just wanted to let you know I am praying for your little girl. Also praying for you and dh, this has to be so hard for you.

[LoveBeingaMom]

Always trust your gut. It is obvious your gut is saying get into another doctor immediately, like Monday. You do NOT need to wait untill tomorrow to think more clearly. From experience, I find that with kids, your feeling in the moment is almost always the right one. This is how God provides for our kids' survival. Moms know when something's wrong immediately and they move.

This may be cliched but some surgeons (not all) have such a God complex that they can't admit when they are wrong or even when something beyond their control and expectations happens. And this can result in permanent damage. Listen to Linda's professional advise.

Photograph the arm, get copies of all medical records, surgical notes and all x-rays (you'll need these for your next dr anyway). But keep a record for yourself. I hope you have insurance that is covering this costly surgery and that it will cover fixing the mistakes (photos might convince the ins co if you have problems).

I seem to be chanting this mantra on all the boards but Document, document, document. You never know when you are going to need something. You're just protecting your kids. No better reason to fill a basement full of paper or to irritate the medical and legal communities and state agencies.

[amyfk]

Man, Im very sorry to hear this Stephanie.

I would count to ten, I know because you are frustrated as heck.

And then I would follow what the others are telling you. I would right away get a second opinion(maybe even a third) from respected pediatric orthopedic surgeons in your area. And do it soon.

Please keep us posted on the outcome.

Sorry to hear your unfortunate news.
Amy K, NJ

[Abdulina]

Just a quick update as I'm up late. DH is at the ER w/ one of the girls. Urghh. She stepped on a huge nail tonight and dragged her foot acrossed it. Her entire bottom half of her foot is sliced opened. She doesn't feel pain so for her this was no big deal. She just waltzed in the living room tonight saying I think I hurt my foot. URghh. We jumped up, got her to get dressed and she's off to the ER. This cut goes way deep. Honest to goodness, I don't see how she missed the bone. She'll be fine, I'm sure. Just wished she could feel pain sometimes. I mean, she can but nowhere near you or I. Any of ht erest of us in this house would have literally passed out from the pain.

Anyhow, onto Alyona and her arm. Long story short. No other doctor would take her case except one. Earliest they could see her was Oct. 19th. Not acceptable. Well, she fell on the bus one day this past week. It was Tuesday, I think. Fell on her arm. Took her to the ER. Oh yeh by now Wakemed should have a seperate wing for our kids Everyone was coming to look at her x-ray. they were in disbelief. Well, unbeknownst to us, the surgeon who originally did her surgery was down in the OR at the time we were in the ER., They got a hold of him and I think really had a good conversation w/ him! He called us at home. Profusely appologized for what he'd done. Promised to make it right by her and by us. Said we wouldn't have to pay a dime for anything related to this next surgery. Hmmm, wonder why???-- just kidding. He knows he could be sued up the river and back for what he did to her. There will be someone else, a hand/arm specialist in the OR w/ him this time as well. I feel confident Monday's surgery will go well. We still will not know for quite some time if she'll ever be able to use her arm again. surgeon is saying yes but we have our doubts.

I'll let you know Tuesday how surgery went on Monday. We have to spend the night. Thanks for asking about her.

Take care,

[Laura Milcsik]

I am terribly sorry to hear of the situation you are in. i am new here so don't know anything about you and whether you have considered what I'm going to suggest, but thought it couldnt hurt. If you live near Maryland, or could possibly travel there, you might want to consider contacting the Kennedy Krieger Institute, which is affiliated with Johns Hopkins Hospital. It is a clinic which deals solely with various children's birth defects and diseases, but one of the programs that I know about is dedicated to orthopedics-specifically a disease called osteogenesis imperfecta, which is sometimes known as brittle bones disease. Even if your daughter doesnt have this condition, the doctors there are very very experienced in dealing with children whose bones are so fragile that they cannot even walk. Also, and this is a total guess on my part, but if your daughter is from Eastern Europe, I have been told that OI, although rare, is most frequently found in people of EE descent. The OI clinic at Kennedy treats adults as well as children, which is why I know about it, because I have OI and am going there after surgery on a broken ankle went very wrong. I had a serious break and which required surgery, then my bone "rejected" the pins and some came out, requiring a second surgery, and now my surgeon wants a 3rd surgery because things are still not right. Thats when I decided I needed a specialist and through a lot of research found the KKI. I was thinking that if you contact them perhaps they can help you out in some way by either seeing your daughter or giving you a referral to someone closer. I don't have their website handy now but if you are interested in it, please post and I will post it on the board or email it, whichever you prefer. They deal with all kinds of special needs at Kennedy Krieger so other people may want to look into them as well. I hope this is helpful and I wish you and all your family the best of luck.
Laura

[Abdulina]

Laura thanks.

She goes into surgery tomorrow morning. My son just got out of surgery right now from an emergency appendectomy. My daughter was at the ER all last night as her foot was sliced open by a huge nail. Almost broke into the bone. My other son has been having some severe asthma attacks as well. Been nuts here. I want out of my house!!!

Surgeon appologized profusely. Has vowed to make it right by her and us. There will be someon else in the OR as well, I believe a hand/arm specialist. I'll let you all know how it goes later this week. I'll be at home as 2 are recovering from surgeries. Shoot me now--LOL.

They say God can't give you more than you can handle but right now I'm SO questioning that saying! Wish me luck. Won't be back on the boards until probably Tuesday or Wednesday. Thanks everyone for asking about Alyona and trying to help us find a solution.

Take care,

[Tigger2]

Prayers to you and your family!

[athikers]

Wow. You are in my prayers.

[riverview]

children's hospital is your best bet, is there one close to you??????

[Dmommab]

is DEFINATELY in order in this situation in my opinion. I would contact another orthopaedist ASAP and explain the situation so you can get in as soon as possible. Good luck to you & I'm so sorry this has happened.

[momraine]

You know I am praying for you. I can also update everyone when I get your e-mails.
Her son with the apendectomy is doing well, she is with her daughter and surgery. She is blessed to have good friends bringing her family food.