Update from Omaha
Sebastian has been listed in Omaha since August of 2018 and since has continued along the transplant journey, still waiting for organs.
After returning home in August we received a phone call shortly thereafter for an organ offer. We leapt at the opportunity but, alas, after arriving to the transplant center the organs were grafted and after the journey they proved unsuitable. So we returned home in a short 48 hours.
During the month of October the COTA team had two successful fundraising events; Wealth Wave Summit, bringing organ donation awareness and Life Take Guts Silent Auction. WW event raised over $2000 and was matched by World Group Financial and the LTG Silent Auction raised over $15,000- such a tremendous financial blessing from friends and supporters! There also was a wonderful surprise from Concept Connections in Plano challenging to raise $2000 in 24 hours then matching it! A wonderful boost to the organization.
To elaborate on Sebastian’s medical status, it was briefly mentioned in “Our Story”, because of his condition the liver is most affected, he suffers from portal hypertension caused by cirrhosis of the liver.
Portal hypertension is an increase in blood pressure within the system of portal venous veins, veins from the stomach, intestine, spleen, and pancreas merge into the portal vein and then it branches to smaller vessels throughout the liver. In cirrhosis, the scar tissue blocks the flow of blood through the liver and slows its processing functions. While the body is trying to get blood to the liver it causes varices, large swollen veins similar to the look of varicose veins, around his ostomy. The varices bleed with surges of pressure, more activity or dry heaving/vomiting.
The medically necessary, continuously running IV nutrition is processed by the liver, to break down this nutrition it is like the liver running a marathon nonstop. Sebastian’s liver is the only thing keeping him alive and is just barely holding on.
The varices bleed acutely every day, but just after Thanksgiving he had a large rupture and lost over a liter of blood in a matter of 10 minutes. The bleeding stopped on his own but he required blood transfusions and other blood products like platelets and plasma. Once stable he returned home, however he wasn’t ever truly the same. Sebastian was more easily fatigued and much more fragile.
On the day of his birthday party, January 19th, he was admitted to the hospital for a blood line infection. It resulted in an OR trip on his actual birthday to replace the line as a precaution and the infection cleared- whoo hoo! Just a day prior to discharge he dry heaved in the morning and lost another 1.6 liters of blood, in mere minutes, from the same area. He was then moved to the ICU and stayed there for a few days to ensure the bleeding stopped. A few hours after being from ICU to the floor, he had to dry heave again and bled another liter.
At that point, there was no guarantee that the bleeding could be controlled and it was urged to be transported to Omaha. This was the most likely of the two transplant centers to have organs sooner. Sebastian was emergent transported up to Omaha on Valentine’s Day and is anticipated to remain here, whether inpatient or outpatient, until the time of transplant.
The family wants to thank everyone for their continued support and prayers! We were able to secure a spot at the Ronald McDonald House of Omaha, where the staff are most gracious and accommodating. We hope Sebastian can be discharged soon, 35 days in a hospital and he is ready to bust out!