Count of Chicks for Children

God's Plan For Us

This is our journey - God's incredible plan for our lives. When we followed the moving of the Holy Spirit, He opened the windows of Heaven and poured out upon us blessings we never dreamed of! Indescribable joy!

" For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Monday, February 6, 2012

Description of Xiaoyun's surgeries -from a non-medical mom

For those of you who are considering adopting a child with scoliosis (or already have a child that needs surgery), I wanted to give you the medical terminology for what each of the surgeries entailed. In the perfect world, I would have a definition by all these, but I'm finally resigned to just getting this much done, and one day when life slows down (LOL!!!!) putting definitions by everything.

Background: Xiaoyun had congenital scoliosis that had never been treated. Her curvature was 160 degrees and was an S-curve. The area where the right scapula would normally be located is actually a part of her spine, and those vertebrae are turned around 180 degrees from the way they should face. Her lungs were compromised, because of curvature and her lung function was at 33%. Had her lung function been any lower she would have been considered too high risk for the operation. Also, because her lung function was so low, they decided it was too risky to wait another year or two. Pneumonia could have been deadly for her. Thankfully, though her heart had to work overtime to push the oxygen through, there had been no damage to her heart yet. As she aged the wall of the right side of her heart would have thickened, until the point that it caused her to go into cardiac arrest. This was truly a life saving operation for her. It was also not without quite a few risks - pneumonia, paralysis, infection, or worse. Because of the severity, her surgeon decided to do the surgeries in four parts- each a week apart if all went well from the previous surgery.
1. Halo placement - four pins inserted into her skull - they screw in between the outer and inner skull, two in the temple area and two behind the ears. The halo was then attached to a pulley system and weights were added until she finally reached 18 pounds of weight stretching out those muscles and ligaments.
2. Posterior spinal osteotomies, rib resection w/ spinal instrumentation, MEPS (removed part of 5 ribs, length of incision was about 12 inches - almost entire length of back).
3. Anterior spinal fusion, discectomy, thoracotomy, T6-possible T10-T11, Solera instrumentation, local bone, BBB, infuse, EM6, SSEPS, NIM, cell saver.  (The incision started under right arm and curved around to the front. She had a chest tube inserted just below incision area, one rib was removed and 'banked' at the hospital until last surgery, There were three different methods they used to monitor the nerves to make sure none were being compromised. The cell savor was a machine that captured the blood she lost, circulated it, and placed it back into her body. 6 discs were removed, as well as a wedge shaped piece of two vertebrae.)
4.Posterior Instrumented Fusion T2 - L3, Solera instrumentation, Cherron osteotomies, scoliosis correction, autograft, Infuse, SSEP, MMEP, NIM. (Placed two hooks - T1 and at T5 (T3 crumbled) and inserted a rod, also rod placed coming up from L3 - L1, rods attached to each other, the bone removed previously and banked, was ground up and used as the 'glue' between to vertebrae, they went in the same posterior incision as before, but had to cut up a little higher than last time. Halo was then removed. Because right portion of spine was turned completely around, they would have had to cut through all her muscles on that side. They would never have healed properly, so they weren't able to put a rod on that side.)
Instrumentation used was titanium so she will be able to have MRI's if needed.
She needed a unit of blood during each of the surgeries, and after 3 of the surgeries she needed an extra unit.

This seems overwhelming looking at this list, but please know that it is now February 6, her first surgery was on January 4, and we are now home, she's gained at least a pound since getting home, has grown 4 1/2 inches, and now has a FUTURE without heart damage and difficulty breathing. It is a miracle, especially when you consider that is has been less than a year since we first looked at her file.
God has been SO good to us and has blessed us with many, many people who have come along side us with love, support and PRAYERS. We are truly grateful that God has allowed us the privilege of watching a miracle in the process!!!!

7 comments:

  1. Hello. I have been following your blog for a few weeks. I found it through a FAITH email requesting prayer. I have also met your husband through our other homeschool co-op at the station for a field trip. I just wanted to say that I am so thankful that all has gone well and that this child now has a bright future. Thank you for your love to these children, but most of all may God bless you for showing them Jesus.

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  2. Thanks so much for the update - WOW.
    What a lot she's been through, but it seems almost like a miracle that they can do it! Looking forward to following the progress of your lovely family!

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  3. Wow, what a strong little girl and an inspiration to us all!

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  4. Wow. What a mouthful. Bless her heart.
    I am so glad to hear she is doing well and gaining weight. Thankful she has all this behind her now and can focus on healing and bonding to her family.

    Thanks so much for keeping us updated on her progress.
    Praying for her daily,
    Karrie

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  5. She is a strong little girl held by the arms of our dear Savior, Jesus Christ. So thankful for her speedy recovery and how you all are back home together! We love you all!!!

    Joy and Andy

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  6. I am blown away by the courage of all of you and the beautiful and full future for Xiaoyun!

    Karin, Jerry and JunFen

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  7. Cindy,
    I really appreciate the information you have been posting. My son, adopted in Dec 2010, has congenital missing ribs (left side 6-8, 9&10 fused together), and scoliosis. When we started his treatment plan, we discovered he had a tethered spinal cord with menigocele which was completely interior. He had surgery to correct this in November 2011. We see the orthopedic surgeon later this month to schedule his VEPTR implant (rod to support his rib cage) though straightening his spine completely is not on the table. They say he's too old for a growth rod though his skeletal age is 5 yrs and not the 8 yrs of age he is chronologically. However, his curve is 58 degrees and much less severe than Xioayun's. Anyway, just saying "Hi!" and glad to have found your blog.

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