[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,