We had an appointment with the hand clinic just a few weeks after Ellie arrived home. Tests and Xrays confirmed that she does, indeed, need surgery to release the amniotic band from just above her left wrist. Without that, she would likely lose her left hand, as it would self-amputate, as her arm continues to grow. I did speak to them about the possibility of amputation, but they feel confident that they can optimize the use of what little hand and fingers she has with the option of lengthening her arm and fingers as she grows. Surgery was scheduled for late fall, but then an unexpected opening became available so that we could go ahead and get the surgery completed before school starts in late August. We met with hand surgeon Dr Gogola a few weeks ahead of time... LOVED her!!! We are to check in 24 hours before scheduled surgery for pre-op, and then expect to spend several days in the hospital afterward.
When we arrived at Shriner's they treated us like royalty from the moment we walked through the front door. After we checked in, we were taken to Ellie's room, where a stuffed animal was waiting for her in her crib. They also invited us to a pizza party being thrown for all of the patients currently hospitalized. We, of course, joined the other families for the party- complete with pizza, sodas, and a gift individually wrapped for each child - including Ellie! I was stunned! I'd never experienced anything like this before! The following day Ellie's surgery was completed in 2 and 1/2 hours and all went perfectly as planned! Her amniotic band was very tightly attached, all the way to the bone, pressing on her vessels and tendons- making the circulation to her hand very limited and it almost impossible for her to move her little "boo-boo" hand at all. This forced Dr. Gogola to practically sever the hand from Ellie's arm and reconnect it with a zig zag stiching. Ellie came out of surgery wrapped to the shoulder with a soft cast. We'd have to wait ten days to see if the surgery produced the results we were hoping for...
I actually really enjoyed the time in the hospital with Elle - It allowed us some time alone away from our crazy household where there is always someone trying to "steal" my attention from my new baby girl. And since I was the very last one that Ellie accepted into her circle of "love", it was good to finally have her build a new level of trust with me and look to me for the comfort she needed. She is one strong little girl though... She did not cry once from the pain! The only indication I ever got that she was in pain was the way she would begin to sweat profusely and get a little quieter. This makes me sad, realizing that she had learned at a very young age to internalize her pain and deal with life (and hurt) on her own...
It was a thrill to watch as they removed the soft cast to reveal the results of surgery! Ellie sat in my lap for the "unveiling" unaware that this would prove to be a special moment! I wish I'd had a camera to catch the look on her face when her hand suddenly bent at the wrist. Her little head snapped around and looked at me as if to say... "Did you see that?"...then back to watch herself do it again and again! She could move her hand at the wrist and her hand and little fingers were warm and pink! Sweet success! Dr Gogola was thrilled. This would enable Ellie to use her wrist to hold small objects and open up the possibilities for lengthening her arm and fingers in the years ahead. Shriner's will take care of Ellie through out her life and will provide any further surgeries she will need along the way in addition to providing a prosthetic hand, should she want one as she grows up. Right now, her hand hasn't proven to be an "issue" at all... There is absolutely nothing Ellie won't try and usually succeed at and her fine motor skills already appear to be ahead of children her own age! She is absolutely amazing and yes, the JOY of our home! My cup of blessings is overflowing!
|Ellie- a "disability"?|
This is a truly amazing story! God bless you all and espesially Elle!ReplyDelete