Scans/Tests Day #3

Could my post titles be any more original?

Generally speaking I think that I have handled most of the scans and tests fairly well. It is a bummer that she usually has to have an IV and get poked and be sedated, but it has never really bothered me even slightly. That is until today. Today was a hard day that turned out to be comical in a way. I am sure that I am the only one that finds it comical, but oh well.

Originally today we were just supposed to go have the radioactive isotope injected for the MIBG scan tomorrow, but after Dr. B realized we hadn't had an abdominal CT scan this was added to today's schedule. However, I wasn't informed that this CT scan would require Brynlee drinking a dye. Usually when we have the CT scans they just push a dye through her IV, so I wasn't expecting this. Basically Brynlee doesn't drink anything other than her milk. She doesn't like juice or anything, so when I informed the nurse/tech people that she wouldn't drink that they were somewhat shocked and surprised. They told me to try feeding it to her with some gatorade anyway, and, of course, she only drank about 1/5 of what she needed to, which was 1/5 more than I thought she would. So after sitting there for awhile and realizing that no one was coming back to check on us, I found the nurse practitioner and told her that she wasn't drinking it and that we needed to do the NG tube.

They finally came and had to try both nostrils, but eventually did get the NG tube down. To put it nicely, Brynlee didn't care for this one bit. She was pretty ticked off. Then they didn't have a big syringe, so very slowly they syringed the rest of the drink down her tube, little squirts by little squirts. Since she was upset it was time to place her IV. Usually Brynlee cries for a few seconds when they do the IV but immediately calms down. This time, she was beyond ticked off. She was a sad girl, and as I sat there waiting for the hour to pass by that the dye had to be in her system before we could do the CT, I felt overwhelmed and sad. I said this is too much. By day 3 of sedation and scans and IVs and trips to the PCMC, I didn't find myself to be okay with it so much anymore. It's in those moments that I've had enough and I want my life back and I don't want to know all that I know and I don't want all of the radiology nurses and techs to know us by name without even looking at the chart and I don't want my daughter to have to go through any of this anymore.

And then all of a sudden as I sat there holding Brynlee watching her sleep it all became quite funny. See I had forgotten to dress Brynlee in CT appropriate attire (no metal snaps), so they had me dress her in this awful dress that someone made for just such situations.  

They also gave us a prize - another blanket - since it had been a rough day. I sat there and found this all funny for some reason at this moment and teared up and chuckled all in the same breath. See, apparently blankets make everyone feel better. We've received several blankets from the hospital since diagnosis because they must have a healing power, and at that moment as I held Brynlee and we both snuggled up under this new fleece blanket on a hard rocking chair everything was just a little bit better even though it had been sort of a long and not so fun day, Valentine's Day even. I'm sorry, but isn't that dress just awful? Maybe you have to see it in person. But thank you to whoever makes blankets to help us and thank you to whoever made this shirt/dress thing so my little Brynlee didn't have to be scanned naked.

So on to the CT scan. Brynlee was awake for the scan but was sedated enough that she didn't care. She chattered the whole time with a drugged up glazed look on her face. It was funny. Here she is getting scanned.

Recovery was easy, and Brynlee ate her bottle and was ready to go by the time the nuclear medicine guy came to inject the radioactive isotope for the MIBG scan. I don't know how many of you remember, but this was the isotope that Fed Ex lost the first time we attempted to have this scan done back at the beginning of all of this. I was glad to see that it arrived this time and have even contemplated taking Fed Ex off of my official naughty list. We'll see.

Next up, MIBG scan tomorrow.