Mayo bound

Well, it's about time for another update. Many of you have already heard, so stick with me while I fill everyone else in...

Alex was admitted to the hospital during our last visit to Cleveland in early March. Dr. Shen dilated some strictures in his small intestine and then admitted him for blood transfusions because of severe anemia. He also administered IV Ig-a blood product that he felt would increase Alex's endurance and overall energy. Unexpected hospital admissions are never fun....


Upon returning to KC, Alex's local GI doc (Dr. Doumit) initiated a new Crohn's medication that is similar to the Remicade that Alex has taken before. Some patients who do not respond to Remicade will respond to Humira. He also added another medication after his latest scopes for a more aggressive approach to medical treament. This is similar to the combination of drugs Alex was on in March of '09 when his disease was well-controlled and he felt so good.

For the lasts several months, we have been alternating between scopes in Cleveland and scopes here in KC about every 6 weeks or so to manage the dilation of the strictures and monitor disease activity with biopsies. Alex had a follow-up scope in late May (just recently) with Dr. Doumit. He was not tolerating food as well as he had been in the past, but had assumed it was due to his recurring strictures needing dilation again. Dr. Doumit actually discovered an ulcer in his lower stomach/upper intestine that was affecting his ability to empty his stomach and digest food effectively. He recommended a liquid diet and addition of medication to attempt to heal the ulcer. He also spoke with us at length about receiving another opinion as he felt like Dr. Shen had exhasted all treatment options as well. He has said several times that Alex's case is severe, likely the most complicated case even the doctors in Cleveland have seen.


After much discussion, research and prayer, Alex has decided that Mayo is the best choice, so it is off to Minnesota we go! We are awaiting an appointment with Dr. Loftus at Mayo, but in the meantime have initiated TPN (IV nutrition) at the hospital where our family practice doctor is located (Menorah Medical Center). Alex has maintained his weight with the liquid diet, but even this has been a struggle. He is very thin and any additional weight loss would not be good. The TPN will hopefully bulk him up a bit and give him the needed energy that he has lost since the liquid diet started.


Alex and I both want to say thank you for all of your many thoughts, prayers and kind words over the last couple of weeks as we have needed to make some big decisions. We cannot thank you enough for all of your support, love and kindness. We will start updating the blog more frequently...maybe then the posts won't have to include so much info-like this one!


Many of you have wanted to know what to pray for specifically, so here it is...
-Tolerance of the TPN so Alex can return home and manage it safely there
-Quick scheduling with Dr. Loftus
-Wisdom, clarity and guidance for us and the doctors as it is likely that even more big decisions are to come


Thank you again for everyone's support. We love you all! Oh, and Alex would like to add prayers for a future filled with Z-mans and fries at Oklahoma Joe's BBQ sooner rather than later :). If I didn't know better, I would swear smoked meat is the only thing he thinks about sometimes...