It’s been just over a year since Jakob Temple had Rex Shunt surgery in Chicago at Children’s Memorial Hospital under the expertise of Dr.Superina. I know it’s been a long time coming, but I am happy to report that his 1 – year check-up was good and he is leading a normal life now. Jakob’s mom Jen recently posted an update on a Facebook site called Portal Vein Thrombosis and Portal Hypertension in Children and Adults …
“I just wanted to let all of you know that Jakob had his 1 year check up last week and he got a clean bill of health! We are so blessed and grateful! We also got to meet another PVT family! We all go through so much with our kids and this group of people have been so supportive and I am so glad to see new people joining who are looking for support because they are sure to find it here! Jakob was so excited to meet his new best friend who also is a PVT kiddo who touched our hearts and his mom Kelly is amazing! There is something to be said about this group of people when you have never met someone in your entire life and when you finally meet them you start crying and have an instant connection with! I will forever treasure my PVT moms! I hope that one day we can all meet up! Jakob was so amazed to see that someone else has the same scars as him! I almost forgot to mention Dr Superina took Jakob off of his aspirin now! So as of tomorrow – no more aspirin – no meds – no nothing – so happy! Now I will continue to pray for all of your children and hold you all close in our hearts and minds … Hugs from Canada”.
Everyone loves a happy ending when it comes to the health of any loved one and I might add especially children, and Jakob is no exception. Like Jen stated in her post and I agree wholeheartedly, we need to pray for all these children with PVT and hold them close in our hearts and minds. For the happy endings and there are now more than a few, we are thankful for the work of dedicated specialists like Dr. Superina and others around the world, however there are those children (and adults) whose cases are far too complicated or advanced for surgery of this kind.
On the note above I want to segue into Kory Kohler’s current situation. Kory is currently facing a possible rare type of surgery called the Sugiura Procedure and this is due to the fact he was not a suitable candidate for the Rex Shunt. (Kory is pictured above with Jakob Temple). Kory is in good hands with Dr. Superina; however we need to remember him and his family in our thoughts and prayers as they look toward the next step in Kory’s journey. You can read more about Kory’s journey and donate to his cause by clicking here: http://www.caringbridge.org/visit/korykohler21
I’ve talked about Jakob and Kory here, but there is another little guy by the name of Carson Kommer who just had Rex Shunt surgery this past Monday (Feb. 2oth) at Children’s Memorial by Dr. Superina. According to a message I received earlier today from Kory’s mom, Carson is doing relatively well and the flow on the shunt seems to be working fine. He is not totally out of the woods yet – so we can continue to remember him in both our prayers and thoughts.
To date there is not yet an ‘official’ foundation set up to help families whose children are facing surgeries of this nature, but there is a site where people can donate to help families differ costs such as travel, food, or lodging when in Chicago for the Rex Shunt or related PVT surgeries. The site is called PVT/Rex Shunt Family Fund and was set up within the last year by Shelly Hart whose own daughter Aubree had a successful Rex Shunt procedure done a half a decade ago. Your donations to the fund would be appreciated as I know there are families who definitely could benefit from this. Click here to view the site. Thank you in advance for your consideration to this most worthy cause!
Until next time,
I am so moved and happy to see these little men. My heart and thoughts are with their families. Our little man unfortunately didn’t make it through the surgery but seeing these boys gives me hope for so many more families enduring such an overwhelming journey.
Thanks for your comments Tracie!
When posting I am always conscious of you and your family and what you went through. Blessings to you for continued strength in the days ahead!
Kindest regards, Clint
hello clint, pls i need your help, my 10 year old died in 2015 at kings college hospital in london because he did not receive any treatment depite discovering he was developing portal hypertension in 2009, we were told it was treatable and nothing to worry about but then no treatment or procedure like the rex shunt was offered him and he was not put on any medication for six years until he started vomitting buckets of blood in september 2015 after an mri scan showed he had grade three varices.He lost all his organ as he vomitted blood for over 30 minutes at kings college hospital, london with no blood transfusion which caused his heart to stop for 45 mins and later started, he suffered 16 cardiac arrests while on life support machine after loosing all his organ function and later died. please i need you to help me with an expert in this field who i hope to use as an expert witness in getting justice for my son.i am wondering why my son was never offered any medication or any treatment for six years even though we were told it was treatable in a hospital where Dr Nigel Heaton works.i am totally demolished and devasteted,i need help please
I’m so sorry to hear about your son! I can’t imagine your pain. I live in Canada so I don’t know what the exact treatment protocol is in the UK compared to here. All I can say is when a patient is diagnosed with portal hypertension after radiology tests and blood work, doctors will in most cases prescribe a beta blocker to slow the heart rate in order to stave off potential bleeding from varices which form due to clotting in the portal vein and splenic veins. Also from the dialogue I have had with several people around the world who themselves have portal hypertension or a loved one (in most cases a child), are prescribed a blood thinner.