Rex Shunt for Sonya August 28, 2011

by Clint on August 28, 2011

August 28, 2011

I received an email update from Tatyana early yesterday concerning Sonya.  Tatyana has granted me permission to post that email message below, and for the benefit of people not familiar with Sonya’s story I want to direct you to the link (see below) to the post on my blog that gives you detailed information on her story.  If you scroll to the bottom of the page and work your way up from my original post dated 04-14-2011, you will get more of an idea of what this little girl and her family from the Ukraine have been through since the early part of this year.  Sonya is in Chicago right now awaiting a rare operation called the Rex Shunt Procedure for Portal Hypertension.   In Sonya’s case, no one can undermine the danger she faces regarding this procedure, or what her prognosis will be if doctor’s do not intervene.  She has already had six bleeds to date since the early part of this year.

Due to the high cost of travel and medical expenses Sonya and Tatyana are here alone from the Ukraine, but Shelly Hart (yay Shelly) a Mom whose own daughter Aubree had a Rex Shunt 5 year’s ago will be spending the day with Tatyana while Sonya is in surgery on Monday (August 29th).  Shelly heads up the parent advisory at Children’s Memorial.  Kelly and Amy are 2 other mom’s who have offered moral support to Tatyana.  Both Kelly and Amy’s kids are facing the same surgery and their schedules may possibly allow them to see Tatyana within the next week or so .

For Sonya’s story click here:  http://www.portal-hypertension.com/little-sonyas-plight-update/

Dear Clint, 

Thank you for your prayers.  The bleed stopped and Sonya is feeling much better now.  Her Hb (hemoglobin) is 9, so Dr. Superina says she will receive a blood transfusion during the surgery. Doctors let us go back to Ronald MacDonald house for the weekend where we now are staying.

Yesterday we spoke with Dr. Superina about her CT-scan results, and he feels like the area near the liver doesn’t look so promising  for the Rex Shunt, but anyways he is going to try to proceed with one if he can.  If after opening the area near her liver and he doesn’t find a vessel good enough to attach a Rex, then he is going to talk to me about the opportunity to do a Mesocaval Shunt instead.  I am hoping that he finds a vessel good enough for a Rex Shunt.   We could go to Moscow for a Mesocaval Shunt,  but we are here for a Rex!    But it doesn’t depend on the doctors desire, it is all dependant on Sonya’s anatomy.  Dr. Superina gave me a bit of hope by telling that CT-scan doesn’t give a 100% garanty that a vessel exists or doesn’t,  but he can only tell for sure when he opens up her liver and has a look. 

I feel so afraid for my little one, even though I trust Dr. Superina, as no other doctor in the world.   I can’t imagine Sonya continuing to suffer from pain and it makes me sick and crazy. I pray for heavenly comfort for her and me during that rough time for us.
 
Shelly is coming on Monday to support me, to be my family at that day. I’m so thankful for her!
Please pray for Sonya as they will start the operation at 8:45 am (6;45 am MST)
 
Blessings,
 
Tatyana

August 25, 2011

For those of you who have been following the story of little Sonya Danilenko from the Ukraine – I have both good and some ‘disconcerting’ news to share with you this evening.  On the good news front, Sonya and her mom arrived in Chicago from the Ukraine last Friday to begin the process for Sonya to have the Rex Shunt procedure which is to be performed by Dr. Riccardo Superina at Childrens Memorial Hospital early next week.  On the bad news front, Sonya was taken into the hospital earlier this morning with a bleed.  This is Sonya’s sixth bleeding episode since February when they first learned about her Portal Hypertension.

Please keep Sonya in your prayers and I will update you as soon as I hear of anything new.  As you might expect Tatyana is very tired from the long journey, and add this latest ordeal to the mix well I am sure you can only imagine how she might feel. Prior to writing this latest post I had started to write a more detailed update  a few days ago which included how they got this far in the journey but I will leave that for another time as this obviously takes precedence!

In the meantime if you are just learning about this little girl, you can view the prior posts by clicking the highlighted words within this sentence.  Thanks for caring and praying!

Until next time,

Clint

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{ 4 comments… read them below or add one }

Donna Limbaugh September 1, 2011 at 10:07 am

My husband and I met Tatyana and Sonya on the last leg of their journey from Frankfurt to Chicago. We sat next to the brave Mom and sweet Sonya on the airplane. Tatyana was exhausted and Sonya was very good for most of the flight. We chatted and I helped with Sonya as much as I could and learned of her icredible story. My husband and I helped her to customs and gave her our information in case she needed anything. I have emailed her personal email but was glad to read the update on the blog. I sincerely hope that all goes well for this strong and brave mother, fighting for her adopted daughter’s life. And little Sonya is sweet and smart and deserving of a long and happy life. Please post any updates. We are anxiously awaiting news.

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Clint September 1, 2011 at 1:09 pm

Hi Donna,

I did not know Tatyana had connected with you – but this is so good! Thank you for encouraging her and following up for updates. I promised to call her today, but will wait till after supper now. Shelly has been sending me updates as of course she has connected in person with her and Sonya also. As soon as I hear I will update the site, but the last post was information I received yesterday via Shelly.

You are right Tatyana is strong and brave for sure, and absolutely Sonya deserves a long and happy life. With anyone it is hard to see them suffer, but with kids it is even harder!

Bless you,

Clint

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Greg Heimel April 19, 2012 at 8:30 pm

You are doing nice work here Clint, Thank you for providing an invaluable resource for those of us afflicted with Portal Vein Hypertension and Portal Vein Thrombosis

Reply

Clint April 20, 2012 at 12:30 am

Greg, You have been a tremendous help to me also! I pray you continue to do well and that you have no serious events associated with PVT. Bless you friend!

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