Well here is the most recent update I have on Mateo. We saw Dr Zallen, peds surgeon yesterday. He spoke with Dr Muir ( new Gastroenterologist) who found the cause of Mateo's bleeding and they made a plan.
With in the next couple weeks, we will drive to Doernbecher where Mateo will have yet another endoscopy, and Dr Muir will inject dye where the staples are that are causing Mateo trouble. We will then drive home and the following day Mateo will go in for surgery. This will be hard on us, since we will spend the day at Doernbecher, and then drive home, all the while Mateo will be on clear liquids ONLY to prepare for surgery. I hate when he can't eat. It literally breaks my heart. He is still young enough that he doesn't quite understand why he is hungry and no one will give him anything to eat. He gets upset, sad, and then angry. It's so hard to see him like that and not be able to do anything to help.
Dr Zallen said that he cannot do this laproscopically, which I am pretty bummed and upset about. Laproscopic surgery is easier on the body, the recovery time is less and there is obviously less scarring. In this case, He said he will have to make a new incision, and it will be a vertical one next to his belly button. The plan is for him to open Mateo up, pull his intestine out, find the dye spots ( staples/ulcer) and either revise or remove them depending on what he sees. He said recovery can be from 3-5 days on average. So we are looking at around a week in the hospital. :(
I received a 'MyChart" message from Doernbecher saying we have an appt scheduled with the peds gastro on the 14th of August, so I'm assuming that is the day the scope will be done and then the 15th will be surgery day...
My anxiety is through the roof. Mateo hasn't had surgery for a couple years now. He is older and wiser. I am worried at how he will handle it. I'm anxious about recovery. I'm worried that something could go wrong. There are so many "what ifs". I swear that when you have a child with a 'disease", it NEVER gets easier, even though some may think that it would or should. You learn to live with the day to day stuff... the meds, the appointments, the procedures, being so called "different". But when you put your child's life in the hands of a surgeon, friends, it does NOT get any easier.
I am going to call the church and request blessings all around. I want Mateo blessed before surgery and I need a blessing of comfort. The waiting is torchure and The day of is going to be hard on us all.
Please keep Mateo, our family and the medical staff in your prayers as we head on this next adventure.
I will post more updates as I get more information.