UPDATE- school, surgery, friends 9.9.19

Good morning Y'all,  since our last update on 8.30 we have all been crazy busy figuring out a plan for schooling and getting our families situated in housing to ensure we can be comfortable as possible  through these times. Also the Transplant Team has been working tirelessly as they continue to put together a plan so we can take our next steps towards transplant.

Marcus as some of you may know has continued to live with a chest tube for the last couple months which from my understanding can be one of the most uncomfortable ways to live your days. The tube is very important because it keeps a continuous suction of air out of his lung which keeps his lung from collapsing. The chest tube was inserted in hopes that the air leak would heal and the lung would stabilize its self and the tube could be pulled out. That unfortunately has not been the case and Marcus's lung continues to leak air. As we look at the big picture in Transplant, a patient can NOT be transplanted if they have a hole in there lung and have a chest tube inserted, so in our case that would take our road to new lungs away from us. In talks with surgeons they had came up with a plan to go in with a camera find the air leak, cut it out, staple it and take pictures of Marcus's lung so we could get a closer look at it.

On Friday afternoon Marcus was taken to the OR and the transplant surgeons went forth with this operation. They were able to find the leak, cut it out and patch it up. We also were able to see his lungs for the first time since 2016 which showed us how fast his disease has progressed. Marcus came out of the OR this time with 2 chest tubes and vented. He was taken off the vent in minutes and Docs seemed happy with how surgery turned out and we have now gotten through the weekend with no air leaks. Our next goal is to heal and look to pull these chest tubes out in hopes of his lung staying stable on his own. Marcus is in alot of discomfort and pain and his nights are restless but he continues to stay focused on his fantasy football teams, snap chat and video games which tells you how strong this boy is!

In this time we have also got him enrolled in Houston public schools and he will begin his first week today with his new teacher, Marcus is secretly really excited about this! His attitude may tell you different but he has always enjoyed school, it's just getting there which can be the issue which alot of us can relate to!

Also we were blessed to have CNORD fly in to town to visit his buddy "Marky Mark" last week as well as Pat who Marcus has become very close with through the online gaming world. We are so grateful for our visitors and will continue to thank them as they come, as they bring the closest feeling to home to Marcus!

September 11th is right around the corner and on this day the Transplant Board will come together and vote if Marcus makes a good candidate for a lung transplant. We are crossing our fingers in hopes that things will fall into our lap in a timely manner. We will continue to update you when we know more and look to keep you all in the loop as we move forth. Thank you to everyone that has reached out and helped support us and we couldn't do this without you. With all of our Love we will continue to fight. We love you all and Thank you!

-Team Marcus

Comments

  • Tammy Matzke

    I am so glad the surgery was successful. Wednesday can't come soon enough! Happy 1st day of school Marcus!

  • Debbie O'Malley

    Many Prayers and hugs always! Thinking about you guys always! Sending much Love to such a strong little man.

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