Back to the dreaded 3rd floor at Vandy where JT and I have never been given good news. Makes my stomach turn just thinking about it! As always, everyone was great! Will loved his pre-op nurses and instructed them on what they needed to do - height, weight, give arm a hug (blood pressure), temperature, etc. JT doesn't go to all of the lab appointments with me so I think he was even surprised by how well Will knew the routine. The nurse brought him some washable markers and cars and told him he could draw racetracks on his sheets. Yep, markers on sheets - this is going to go over really well once we get home! He had a blast! He didn't want to go back to the OR and put up a little fight, but of course it all worked out, just involved some sobbing and refusals.
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| They drew a race track for the cars. |
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| On your mark, get set, go! |
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| Cruising around |
Venogram - This was requested by Cincinnati. They are looking at the vein structure in his right leg and foot. They wanted to see his deep vein system and look for dilations in his large vein. Basically we wanted to see if the large vein was not important so we could eventually do an ablation of it. I do not understand the details of what was found, but I think the large vein probably has to stay. We will get a better explanation when we got to Cincinnati in October.
Cystoscope - On the MRI in May, a spot was found on the bladder wall which was thought to be part of the malformation. Dr. Thomas did a scope through urethra up to the bladder for a better idea. He found lots of inflammation and redness in the urethra. There isn't really anything that can be done about it. Hopefully the Rapamune is keeping it under control. The malformation is present through the bladder wall, but luckily just a small area. We discussed surgery to remove that small area and decided that was probably the best plan. Dr. Snyder had already mentioned this being an option when she originally spoke with Dr. Thomas before the procedure. None of these findings were a surprise to us.
I contacted Cincinnati and Dr. Adams wanted to talk with Dr. Thomas about the surgery. I had a feeling she wasn't comfortable with it, and sure enough the nurse called today to cancel it. We rescheduled another cystoscope in 3 months. I'm not sad about it - I don't want Will to have surgery, but I feel like we are just finding more and more things that we can't do anything about. We are going to be hopeful that the Rapamune is going to continue helping. Who knows, maybe the spot on bladder was much worse before we started the medicine and we are just seeing it now because we looked for the first time.
The saddest part of my day was that it was Dr. Snyder's last day. Will picked out a superhero card for her and even signed his name. We didn't get to see her but dropped it off at her clinic. She was such a great source of knowledge for me and I already miss that I don't have her to explain all of this to me. Now I am struggling with going back and forth between Vanderbilt and Cincinnati and making sure that they are communicating (which they are, but Dr. Snyder made it easier).
