September 8, 2011
For those of you following the story of little Sonya and her Rex Shunt operation in Chicago last week, her Mom sent me an update this morning.
As you know after over 11 hours of surgery with Dr. Superina at Children’s Memorial he was only able to do a Mesocaval Shunt instead of the Rex Shunt as many attempts to do that were met with clots which disallowed it from working. Now the problem is whether or not the Mesocavel Shunt is actually working and they will not know anything for a day or tw0. Sonya’s INR blood is fluctuating too much so they are trying to understand this more. Dr.Superina has ordered an ultrasound to see if they can figure out what exactly is going on with her system. They are concerned with her levels because she is still bleeding from her incision, and she has also been bruising. Another grave concern is the fact that she still has gastric varices and she could also be at risk for bleeding again.
Sonya also continues to have digestion and reflux problems. She could not eat the regular formula or baby foods, and had trouble keeping anything down. The nutritionist in the hospital gave her a special formula called EleCare formula and it seems like Sonya is able to digest that. They provided Tatyana with 6 cans supply of this formula, which was covered from an emergency fund from the hospital. They also gave here a Warfarin supply for 2 months, which was covered from the same fund. Tatyana will still have to buy liquid Omeprasol for her, and it is expensive at 184$ for 300 ml which is her monthly amount. She still needs to buy formula and Coumadin plus other medications to take home for 2 months after when she leaves and she does not know how she is going to pay for it at this point. They are going to stay in Chicago one-month post-op for follow-up, so they will need funds for food. She also mentioned that they would need to purchase warmer clothing; however Shelly has rallied some people from her Facebook who will provide in that regard. Shelly also will be donating her profits from the sale of an on line women’s speciality store and here is the address for that: http://www.mythirtyone.com/shellyhart/ all orders in the US will be shipped directly however orders to Canada will have to be shipped by Shelly herself.
Also a big thanks to Shelly for setting up another important site just today for donations to families of children with PVT/Rex Shunts – check this out: http://www.everribbon.com/ribbon/view/1399 (I can see this directly helping not only Sonya’s family but many others in the days/years to come).
Please continue pray for Sonya’s needs – first of all for her health problems and secondly for financial issues that have arisen from her recent discharge.
Thank you for the informative update! Tatyana and Sonya, you are in my family’s thoughts and prayers. Sonya is a very brave, strong and beautiful little soul. Please take care, we have faith that you will get thru this difficult time. You are not alone! Thanks again for the update Clint! Where would we be without your constant dedication to every one of us and the illness that has little awareness?!!!
Thanks Claire for your kind words.
When it comes to younger people with PVT like yourself and that of others I feel really bad about the challenges of the disease and how it affects that person and loved one’s around them. To bring awareness to the condition and also to encourage those with the condition has become part of my mandate.
Next year it will be 10 year’s since my diagnosis, and I believe to have survived through some of the earlier scares I had since then is nothing short of miraculous! We have better medical care now and a worldwide consensus in the medical field on treating the disease, but we have a ways to go before actually finding a cure that works for everyone. It is a mysterious and scary condition, but for me I believe that God has showed me His grace through my suffering and I attribute that to prayer and the hope I have for eternity.
Lastly you have encouraged me in many ways you may not even think. Your journey has been one of seemingly insurmountable obstacles and my heart goes out to you as you deal with those issues. The pain you have to deal with must be very disheartening at times, but you always seem to remain hopeful. I know you have had other challenges in your life, like most of us do, but you have a resilience to bounce back despite those obstacles and that is encouraging. Keep fighting the fight – I’m praying!
After meeting these two on the plane, I have not been able to forget them and their incredible journey. I am glad that there are resouces available to Tatyana both financially and emotionally. We are hoping to visit them real soon and are hoping that things continue to improve. I echo your words Clint….keep fighting the fight!