Yesterday, we brought Summer in to Children's for a CT scan with contrast to check whether or not fluid injected into the cyst will leak. The only appointment time available was one without anesthesia, which I was really apprehensive about since she had never before been awake during a CT scan.
Dr. Browd was scheduled to do the injection of the contrast, but was in an emergency procedure when we arrived, so a couple of resident doctors who have followed Summer's case came down to help us instead. They swabbed the area around her Ommaya reservoir with iodine, then inserted a needle and withdrew some of the fluid from the cyst, replacing it with the same amount of contrast solution. The contrast acts like a dye. It's a clear liquid, but is visible on the CT scan.
Summer wasn't happy about it, but who would be? I think she was mostly just upset that we were holding her head still and people were messing with her. She bled a tiny bit after they removed the needle, but all-in-all it was a pretty uneventful procedure. She'll have to go through the same process (except they'll inject Interferon rather than contrast) twelve more times over the next few weeks.
We had to wait for a little while for the contrast to disperse, and then they brought us in to the CT room. I had to lay Summer down on the table, with her head positioned between two padded tension paddles and held down by a padded strap to keep it still. Then they swaddled her body onto the table so she couldn't squirm around. They left one hand free so I could hold it during the scan, and gave me a flashing Mickey Mouse light to distract her with. Yeah, right!
She was NOT happy at all about being strapped down on the table while it slid back and forth through a big machine that made a loud whirring noise. Luckily, it was all over pretty quickly, and they got the scans they needed without having to do it again. I felt awful for her, but honestly she screams much more forcefully when she's getting her hair rinsed out in the bathtub at home...so it can't have been too bad. She calmed down as soon as we got her unstrapped from the table and I was holding her again.
The scans showed no leaks from the cyst, so we're set to start with the first Interferon injection tomorrow at 3pm. This one will be slightly different from the rest of the treatments because they'll withdraw as much of the fluid as they can from the cyst before injecting a small amount of the Interferon. Going forward, they'll only remove as much fluid as they will replace with Interferon so they can tell if the cyst is continuing to produce fluid on its own.
This week, Summer will have had four doctor's appointments in five days. Today was Summer's two-year checkup with our pediatrician, Dr. Anderson. We talked about a lot--vitamins, diet, development, etc.--but there's not really anything major to report. Summer weighs 22lbs 12oz (6th percentile) and is 33" long (35th percentile). She had to have one shot, and it was a breeze. I miss the days when I would agonize over taking her to the pediatrician for shots because it seemed like such a big deal...
Now I see the answer to my earlier questions. God be with you and Summer in the days and weeks ahead. I pray that the Interferon treatments will get easier and easier as she gets used to the routine. Love, Aunt Nora
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