Get Conner to Nebraska: Part Deux
Donation protected
Conner's doctors at Texas Children's Hospital in Houston, TX have been in contact with specialists at the Nebraska Medical Center about the blood clot causing his bleeds and we need to make another trip to Nebraska. We are set to leave on October 25, 2013.
The reason for this visit is two fold:
1. They're going to do the evaluation for liver and small bowel transplants.
2. Based on the imaging and other information gathered during the evaluation, they may decide to do a shunt revision surgery.
A Bit of History
You may be wondering why Conner would need a transplant. While Conner has a rich medical history, I will use this space to focus on the transplant related issues.
Conner was diagnosed with "Portal Hypertension" at just over one years old, due to an old (pre-birth) blood clot that was discovered. He had a procedure at Texas Children's Hospital where a shunt was installed to release the pressure in his blood vessels in hopes that it would stop the random bleeds in his esophagus and gastrointestinal track. Unfortunately, the success was short lived and after a few balloon-ings of the shunt, Conner was sent to the Nebraska Medical Center in December 2011, where a new shunt was installed, using a piece of his jugular vein.
This shut was more successful, but scar tissue, again, caused the vessel to narrow. While the shunt has been ballooned numerous times, the doctors feel that this continuing to balloon the shunt isn't a long term solution and other avenues must be considered.
Given the location of the clot and that the doctors aren't sure why the blood clotted in the first place, they feel that a liver and small bowel transplant are quickly becoming viable options.
What We're Asking For
We're asking for our friends and colleagues to give a little bit to help get us to Nebraska and back. While insurance may cover the medical stuff but it doesn't cover things like travel, lodging, and feeding everyone.
We have a pretty good feeling that this won't be the last trip we make to Nebraska and should he qualify for a transplant, more fundraisers and donations will be needed to fund that stuff.
Knowing that, we're not asking for everyone to give hundreds of dollars, instead we're asking for smaller donations. If everyone we know gave around $20, it should be enough to handle all the expenses and have some left over in case they decide to keep us in Nebraska for a surgery.
We're mostly looking to offset these costs as much as possible. Any donations help with that.
What the Money Goes To
We wouldn't ask you to donate without knowing exactly where the money is going to go. Traveling to Nebraska has some expenses like traveling, lodging, & food purchases.
Donations made here will go towards the following:
* Gas. It takes gas to drive a car from Houston to Omaha, NE. Some the money is going to go to gas.
* Lodging while in Nebraska. The hospital has a small hotel, usually reserved for transplant patients but if rooms are available we'll be assigned one. When we stayed last time the cost of this room was $68/day (plus tax), we're currently planning for 10-12 days for the evaluation which means around $820 total. This could be more if a surgery is done, as we'd be there longer.
* Travel lodging. It takes about 2 days to travel to Nebraska from Houston, Tx. Meaning, we'd need two nights in a hotel while traveling (one on way there, another on the way back). Last time we stayed at Hampton Inn each way which was around $85/night.
* Food. Both for traveling and while there. We'll be able to offset the food costs a bit as the hotel room has a fridge and a microwave, but there will be a good amount of eating at the hospital cafeteria. But most definitely, some of the money is going to go towards feeding the family a little.
The reason for this visit is two fold:
1. They're going to do the evaluation for liver and small bowel transplants.
2. Based on the imaging and other information gathered during the evaluation, they may decide to do a shunt revision surgery.
A Bit of History
You may be wondering why Conner would need a transplant. While Conner has a rich medical history, I will use this space to focus on the transplant related issues.
Conner was diagnosed with "Portal Hypertension" at just over one years old, due to an old (pre-birth) blood clot that was discovered. He had a procedure at Texas Children's Hospital where a shunt was installed to release the pressure in his blood vessels in hopes that it would stop the random bleeds in his esophagus and gastrointestinal track. Unfortunately, the success was short lived and after a few balloon-ings of the shunt, Conner was sent to the Nebraska Medical Center in December 2011, where a new shunt was installed, using a piece of his jugular vein.
This shut was more successful, but scar tissue, again, caused the vessel to narrow. While the shunt has been ballooned numerous times, the doctors feel that this continuing to balloon the shunt isn't a long term solution and other avenues must be considered.
Given the location of the clot and that the doctors aren't sure why the blood clotted in the first place, they feel that a liver and small bowel transplant are quickly becoming viable options.
What We're Asking For
We're asking for our friends and colleagues to give a little bit to help get us to Nebraska and back. While insurance may cover the medical stuff but it doesn't cover things like travel, lodging, and feeding everyone.
We have a pretty good feeling that this won't be the last trip we make to Nebraska and should he qualify for a transplant, more fundraisers and donations will be needed to fund that stuff.
Knowing that, we're not asking for everyone to give hundreds of dollars, instead we're asking for smaller donations. If everyone we know gave around $20, it should be enough to handle all the expenses and have some left over in case they decide to keep us in Nebraska for a surgery.
We're mostly looking to offset these costs as much as possible. Any donations help with that.
What the Money Goes To
We wouldn't ask you to donate without knowing exactly where the money is going to go. Traveling to Nebraska has some expenses like traveling, lodging, & food purchases.
Donations made here will go towards the following:
* Gas. It takes gas to drive a car from Houston to Omaha, NE. Some the money is going to go to gas.
* Lodging while in Nebraska. The hospital has a small hotel, usually reserved for transplant patients but if rooms are available we'll be assigned one. When we stayed last time the cost of this room was $68/day (plus tax), we're currently planning for 10-12 days for the evaluation which means around $820 total. This could be more if a surgery is done, as we'd be there longer.
* Travel lodging. It takes about 2 days to travel to Nebraska from Houston, Tx. Meaning, we'd need two nights in a hotel while traveling (one on way there, another on the way back). Last time we stayed at Hampton Inn each way which was around $85/night.
* Food. Both for traveling and while there. We'll be able to offset the food costs a bit as the hotel room has a fridge and a microwave, but there will be a good amount of eating at the hospital cafeteria. But most definitely, some of the money is going to go towards feeding the family a little.
Organizer
Michael Koby
Organizer
