June 7th Update
I’m happy to report, that Ethan seems to be doing well. There was some concern, that he had an infection in the healing drain tube wounds. Unfortunately, the anti-rejection medications are causing headaches and upset stomach. Rebecca is taking Ethan to his daily doctor appointments. Blood draws are required, to ensure that his anti-rejection medications are at their proper levels. These appointments will be ongoing for the next several months.
Evan will be having his annual heart biopsy surgery to determine his level of transplant rejection. Ethan, Evan, and the family, must remain in Rochester near the Mayo Clinic. Thank you to all who have had Ethan in their thoughts and prayers! Please continue to pray for Ethan’s healing and recovery. The family also needs your continued prayers and financial help. Please consider a substantial one-time, or ongoing monthly gifts.
My twin grandsons Ethan and Evan were born with Long QT Syndrome – Type 3, a very rare heart condition. They are two of only twenty-two people in the world who have this condition, and they are the only twins with the condition. Also, both boys are autistic, and have learning disabilities. Eight years ago, Evan’s heart failed, and he received a transplant, while Ethan has survived until now with his birth heart and implanted pacemaker and defibrillator. Unfortunately, Ethan now needs a heart transplant too. To complicate things, Ethan must have an O-Negative donor heart.
On March 25th, Ethan had 8 defibrillations and was transported by flight for life helicopter to the Mayo Clinic. He was hospitalized on a lidocaine drip, in an attempt to control his arrythmias. Mayo did a transplant workup wanting to list him as a 1B, with the hopes of going home to the most comfortable setting, until a suitable heart becomes available. Ethan was released on April 3rd, however, within 2 hours of being home his heart had 31 V-Tach and Torsade episodes, and 6 more defibrillations. His port was accessed, and a lidocaine bolus was immediately administered, in an to attempt to stabilize him. He was again transported by flight for life helicopter back to the Mayo Clinic, where he remains at 1A status and on a lidocaine drip until he receives a suitable heart transplant.
This family must keep and maintain their home in Brownsdale, MN, while they must now live in Rochester during this trying time. The federal government will cut off Ethan’s monthly SSI payment once he’s been hospitalized for 30 days. Nursing and general care for Evan needs to be available around the clock, as mom and dad attend to Ethan’s immediate medical needs. Short-term housing in Rochester is very expensive and is totally out of their budget. They really need your help!!!
Please consider a one-time substantial gift, or ongoing monthly contributions. I have established a separate bank account for this need. Thank you for your kindness and generosity.
PLEASE NOTE: Unfortunately, the Rochester Ronald McDonald House, and the Transplant House, are not available to my daughter Rebecca and family. RMH does not permit non-family members inside the building, unless an adult family member is present. Evan must have nursing to administer his anti-rejection meds, and Rebecca must be at Mayo with Ethan. The Transplant House is only available post-transplant, however, non-transplant children (Evan), are not permitted.