Ok folks..I feel such accomplishment in making this post.
I spoke with so many department heads here at Cincinatti's Childrens hospital about how they DO NOT have a plan in place on handling children who are adopted, abused or neglected and havent gone through their international adoption center. (we are from Florida)
My issue is straight forward..my child was adopted at 2 1/2 years old...her history is vague and questionable. I do not have much info on her at all. The entire adoption was much harder than parents who adopt at the age of 6 months old. If you were to ask me, our Gotcha Day in China was pretty close to being classified to kidnapping in her mind. She didnt know who we were, where she was going and understand why she is not with her orphanage friends. Not to mention she didnt understand us. Very traumatic..then pop her in a plane for 28 hour flight to USA to be greeted by more strangers/family...
We had attachment issues right off the bat...she did not want to be touched , handled or looked at..
We have made SO SO SO SO much progress with our therapists. She is now exclusively attached to my husband and myself and of course her brothers...
Things are good...so I thought
Here are just a few issues I have here :
-We arrive here in Cincinatti childrens Hospital and enter a room with a crib with bars..Ok flashback..she became combative and unmanageable...but I have to force her to stay in the crib
-she flips when they put a blood pressure cuff on. The constriction and restraining feeling throws her into a tailspin
-she has had surgery in China and has developed a fear of the white coat..she went ape shit in the cafeteria when the chef came out with a white coat...
-having a different nurse every shift and everyday is NOT good...
-then my biggest problem is this...my child has an issue with being restrained , held down , papoosed or having arm restraints on...This is reflected I am sure from the past she has had. To be told that THEY HAVE to get an IV line in or catheterize her by 5 people holding her down is barbaric and out of the question .
These issues caused us to take 30 steps backwards ..just when I thought we were making progress...NOT
I fought tooth and nail and advocated for my child and refused treatment unless she was put under general anesthesia...very draining...especially when my family and spouse arent here for leverage..
anyhow here is where we stand...I met with a social worker here at the hospital and works for International Adoption...She is spearheading a new program or method which we call "Myah's Way". This is still in the works but clearly Myah fell through the cracks. A child psychologist should of been involved on how to medically care for her in a less traumatic way.
And yes the route they would of taken was exactly what I stood up for..general anesthesia and fentanyl for agitation...
either the nurse, surgeon, radiologists, Picc team ..someone should of notified a child psychologist when they saw how the "standard " doesnt apply to Myah..Thus why I had to have things done "Myah's Way"...
This program will be for all children..whether adopted, neglected, raped...whatever...someone needs to think outside of the box and not treat without understanding what effect this will have on the child...psychologically
So to all my blog friends that are coming to Cincy for treatment (and there are a lot)...this will be in place and done Myah's Way...
Our journey to Adopt our daughter from China Born March 7, 2006
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11 comments:
Let's hear it for our little Tammy Faye child advocate!!
I'm so very proud of you. You are totally going to need to sleep when you get home. Operative word there: w-h-e-n.
I've had folks contact me asking for your blog address. Mainly thru one person/yahoo group...and I knew that ya'll had tons in common. I see where some have posted on here...and they'll be headed to Cincy in the near future. What you are doing will be of utmost importance to them, too. Time to have that team in place to see to the individualized needs of these children.
You ARE a Nobel Prize Winner!!
Vicki
OMG!! That is awesome!! It is such an honor to be your bloggerbuddy:)
Myah's Way..... I love it!!
Rina,
I am so sorry that Cincy has been so difficult for your baby and for you...it is so difficult. Sophie had her surgery a month after we got home from China. And there are things I certainly had done differently ( and have told every momma I could going to cincy) They let sophie and I sleep in the same which helped.
I couldn't agree with you more about Cincy just not having a good way to help children with traumatic beginnings....and their families. Thank you for battling for all the babies that will come after you and your girl finally get home.
I hope that the rest of the time goes smoothly. If I lived in Cincy Soph and I would stop by.
peace and safe travels home.
Oh, WOW!!! That is such tremendously wonderful news!!!!
That is wonderful! I'm sorry that you had to be the one that had to fight for this, but at least something good will come out of this for others and for the remainder of your stay. We did not experience much of this, but our stay was short. My daughter will have another surgery when she is done with her meds. for her tonsils and adenoids, but at least I can demand different treatment. We did see one ENT from Children's that is not going to work for us and I have another name that should be more child friendly. You would think that the doctors and nurses etc. working there would be child friendly!! Thanks for speaking up and staying the course.
It sounds like you are getting the procedures changed for the better in the hospital,I knew it would take a person like you to do it! Happy to hear Myah is doing better. I will call you around 10 pm, only kidding. I will call when we get home from Daytona.
I would love to meet you, shake your hand, give you a hug and a pat on the back. I will be there on Monday with my China angel daughter for tests. I'd be honored to meet you for 5 minutes between appointments.
What you are doing is amazing. Inspiring. How can I help to keep things going once you go home? I'm local. But also have friends coming from out of town to CCHMC for tests and surgeries.
You are an inspiration.
melicombs
You are my hero! Thank you for all your doing. We will probably be at Cincy this summer with our new little boy from China. Let us know how we can support you and the new "Myah's way".
I would like to introduce myself and offer any assistance I can. Annalise and I were in Cincinnati Children’s Hospital 10-11/08 for her PSARP redo with Dr Levitt. She is just a few months younger then Myah and also from China. I will share some things here but please email me so I can share more regarding urology issues and cathing. My email will come though this post.
First of all if she does not have heart issues and you don’t think she is going to keel over in the middle of the night refuse all night vitals and all blood pressers from hear out so you both can get some sleep. Did they get you egg crates for your bed that parent bed is the worse. I went to the pharmacy downstairs and got Tylenol and Benadryl and put myself out so I could get some sleep. That is all Tylenol PM is made of. I too refused to leave Annalise because they just cage them into the crib and turn the TV on. Going to the store during nap time and getting frozen food was a life saver. I even got Annalise something for the day she got to eat and I was so glad I had an Asian frozen dinner waiting for her. We were called back to the hospital after being released for urology testing and diagnosed with a neurogenic bladder. I have just posted our story on No Hands But Ours so I won’t go into it here. You will get out of there soon and be on the other side of all of this hang in there and please email me if I can offer anymore help. The sure do need a program for these kids so they better understand what they are going through.
You are in our prayers
God Bless
Paulette and Annalise
Rina,
Wow, what a road you are paving for those of us coming after you!
Myah's Way will help hundreds of children to come ... mine included, I'm sure of it.
Your honesty and willingness to share her story has been very encouraging to me. Thank you for sharing it.
Margie
We have not met, but soon I too will be mother to a child with IA from China. I wanted to thank you for allowing us to share your journey through your blog and for ALL of the effort you and your precious Myah are putting forth to ensure all those who follow will have the best possible care; the best "Myah's Way" care! Thank you, thank you, thank you.
Jane
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