I'd like to start this update by thanking all of you who have kept us in your prayers and recognizing some very ordinary people I've encountered, there is a lesson here, kindness goes a long way.
When Austin and I arrived here, a very kind lady took over the wheelchair for me and got us directly to where we needed to go, took away a little stress, providing me with a little break from pushing the wheelchair.
Just ordinary conversations and smiles make a difference, one of our housekeepers and I got on a nice distracting conversation about genealogy, she told me a little about her family’s roots and I told her how for years I'd been search for my mother's grandparents. When Austin is quiet and doesn't need me I've been doing a little searching and darn if I didn't discover a marriage I wasn't aware of for a great aunt and actually found her marriage application and it listed her parents’ names.
Last night Juan from transportation was an angel. Austin had a CT scan at 12:30 am and I had no idea how he would do, he wouldn't drink the contrast no matter what we put it in and I had no idea what would happen when they did the CT. Well Juan and Austin got to talking about Disney World and they both got to doing their best Goofy or Mickey Mouse impersonations, we had Austin convinced what he was going to do was just like a Disney Ride - he did Awesome. Although, when we got back to the room at 1 am he was ready to stay up awhile, didn't want to get into bed. I wouldn't turn the TV on and just let him sit in the chair while I crawled into my bed, he sat there quietly and finally got into the bed and mom then tucked him in.
A little kindness, a soft smile, and a little humor has made our stay a lot more bearable. I'll be honest I've had some very difficult periods where no matter how hard I try to keep a smile on my face for Austin the tears just fall.
Yesterday was not a promising day. Our hemoglobin count dropped below five again so he had another blood transfusion last night. Just got an update from the nurse, it's back up to 5.9 again (can't get too excited about that any more since we've gone up and down so many times).
Surgery is going to happen quicker than we thought, possibly today or tomorrow. They gave him the necessary vaccines he would need prior to having his spleen removed. I meet with the surgical team yesterday who just briefly explained what they would do, along with our other doctors from internal medicine and hematology. Our hematology doctors also want to get a sample of his bone marrow. We know Austin could not tolerate having that done so they will do it when they have him under for surgery. They just want to verify that there is not another underlying condition that is resulting in his hemolytic anemia.
Please keep us in your prayers that the surgery will go well, and most importantly that once it is removed the hemolytic anemia goes away. Hugs, Sally
Mom surprised him with a little gift before he does another round of IVIG treatment. Here we go again an IV in each arm.
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