Happy 4th of July 2010!
Hard to believe four years ago today we were all heading to Omaha for day before check ups and blood work.
In May we celebrated one year of Trey not having any overnight hospital stays! This past year did come with a lot of ER visits, doctor visits, Xrays, labs, phone calls to Omaha and a handful of visits to see the docs in Omaha. Over the past year and even more this year Trey has complained of his tummy hurting especially by his spleen. Every month this year he has had it where it would last 7-10 days. When it is at its worst he can hardly move, can’t sit up, walks bent over, can’t sleep and is in pain! He also has had a lot of fevers. Every month we call Omaha, see the doc here, do xrays and it is always just a virus. Having had enough of seeing him in pain, us and Trey’s doctor here called Omaha and said something is not right it is time to find answers.
He had a ultrasound done here and one in Omaha. He also had a MRI done here. We did get a scare….after his MRI we were sent to Omaha. There they told us he had several swollen lymph nodes around his spleen, stomach and they could see a couple on his back. Of course the worry was PTLD (cancer). The days of waiting were long and stressful. His EBV came back negative so they didn’t think a biopsy was needed.
At the beginning of June they did a MRI of his veins to watch blood flow.
We took a couple days off and enjoyed some time in KC. Trey and all of us were given some free tickets to Worlds of Fun through Make A Wish. We also visited Great Wolf Lodge and really had a great time. While in KC Omaha called with results from the MRI. From watching the blood flow, his still growing spleen and collateral veins that have developed around his spleen they suspect he has a blood clot in his portal vein that was sewn into his new liver.
On June 25th he had a upper and lower scopes to check for bleeding in his stomach, esophagus and rectum. They were also looking for enlarged veins and if so how big and how many. I was encouraged by the fact that he wasn’t vomitting or stooling blood. Trey could only eat clear liquids the day before the test plus he had to drink a ton of Miralx to clean him out. This was very hard on him and us. Thankfully the test got moved up to 8 am. The doctor asked if I wanted to go back when he was put to sleep. I said sure I’ve done this before and he wasn’t happy about leaving me. As soon as Trey saw the gas mask he started freaking out. It was hard watching him. Even though he has been put out so many times it just doesn’t get any easier and I always have a few tears. The GI doc visited with me for a long time afterwards and he did a great job of explaining all of the pictures. Trey has a large varix