Health Update and Prayer Request

 Thank you to everyone who answered my call to join us in prayer last night...I hate vague posts so I apologize, but Alex is 18 and I wanted to know how much he was comfortable with me sharing. I only told our family and a few of my closest friends last night what was going on.

So the very quick explanation is that he is having a pretty severe flare up of colitis with bleeding. What that means and what the next little bit looks like is a bit more complicated, so bear with me as I try to explain this. In 2017,  Alex had his ileostomy surgery. Over the next several years he had multiple severe flare ups of Diversion Colitis. The severe pain and GI bleeding is what led us to move forward with a total colectomy in 2020 (Removing his whole colon, leaving only abut 4-5 inches of colon/rectum left) They leave this "rectal stump" because the surgery to remove that is horrific and very often healing is a major issue. However, leaving that bit of colon means you can still have diversion colitis in that area. Alex has not felt well all week. I have made him take his temperature multiple times and even joked that an ambulance ride in the ice storm was not really what I had in mind for the week! His Temp was fine, but he felt pretty bad and required extra stress doses of his steroids all week. He was having some bleeding and pain, but nothing alarming. Fast forward to yesterday when he started having much more bleeding. Unfortunately there aren't any good treatment options for this. Here is where it gets a bit more complicated/concerning...Alex was transfusion dependent for most of his life. He could not keep his blood counts up. As his health has stabilized his need for blood transfusions has diminished. His last transfusion was in 2020 after his surgery and he had a life threatening reaction called a TRALI (Transfusion Related Acute Lung Injury). Those of you who have followed our journey probably remember much of this. We wound up in the PICU struggling to keep his O2 Sats up on 14 liters of high flow oxygen and very close to being put on a ventilator. Alex has been anemic over the past few months, but the decision was made to try and give iron infusions to try and get his body to bring up his counts without a transfusion. We completed two of the three infusions, but missed this week due to the ice. So as you can see we are holding in a precarious balance right now. We are at home. Short of giving blood there isn't anything they can do at the hospital. Alex has started a medication to try and get the colitis under control. If he declines we have to head to the ER. If he is okay through the weekend, our GI has asked that we check back with him Monday to figure out what to do next. Hopefully, you made it through that lengthy explanation and have an idea of why we desperately need prayers right now.

Alex is the bravest, toughest human I know. He goes through more than most could imagine and he somehow manages to do it with joy and a love for life that few have. If you have had the privilege of meeting him in person than you know his smile and his personality are completely infectious and he makes an impact on everyone he meets. So in true Alex spirit instead of spending today at home or in the hospital, we are heading to DBU to interview to get into a special housing/mentoring program that he wants to be a part of next year. So as you are praying for his health, please pray for this opportunity as well.

I don't know what this day, or week or year hold for Alex, but I know whatever happens we serve a loving God who has walked beside us every step and has used Alex for his glory every day of his life and I have no doubt he will continue to do so.

Thank you for your prayers.

Ali