This week is Jesse’s scan time. I delayed making any mention of it because my brother is taking his huge pharmaceutical boards on the same day as Jesse’s scans, and I didn’t want him to be thinking about Jesse when he needs to concentrate on his test.
But due to a strange fluke, her scans have now been delayed to an unknown time.
Jesse and I headed out for CHKD yesterday morning to get her IV placed in her arm for blood draws, the MIBG radioactive isotope, and anesthesia. The plan was to take her blood when the IV was inserted, then go downstairs to radiology at 1pm for the isotope to be put in through the IV. And afterwards have an ultrasound of her kidneys. Then today we would have returned at 7am to get anesthesia and have the over an hour long MIBG scan.
In the oncology clinic, Jesse’s line went into her hand easily. She barely cried, and needless to say I am very proud of her for being so brave. She was excited to get the hand wrap with the purple hearts.
Afterwards we headed down to get the isotope. Luckily the technician asked if I’d given Jesse her SSKI drops to protect her thyroid. And I had totally forgotten! I even had the reminder in my phone, and had forgotten! The technician was able to order some for us to pick up. And we decided while we waited for the pharmacy to fill it to do the ultrasound.
While she was working out the details with the ultrasound technician, the radiologist came in. He was very concerned that a set of MIBG scans he just looked at where not as clear as they should be. He asked our technician contact the engineer. They asked us to check with them after the ultrasound because they might have the camera fixed then.
Jesse and I stepped next door, and had the ultrasound done. Jesse complained bitterly that it was uncomfortable on her stomach. I am wondering if she didn’t like the gel they use because she complained when I put sunscreen on her stomach today.
The technician spent a lot of time looking at her left kidney, and even started to act a little funny. To me with an extremely untrained eye, the kidney looked the same. I told her that we knew the left kidney was enlarged. My knowing that seem to make her feel better.
We then went back to the MIBG room, where they told us they didn’t know when it would be fixed. So they had to cancel her MIBG. We asked if we could at least do the CT Scan, but the radiologist wanted to do that with anesthesia because the contrast can give the kids a funny feeling. And that feeling can cause them to wriggle on the table messing up the CT Scan, which is a one shot only deal.
Jesse was extremely upset by all of this, and I don’t blame her. However, I would feel beyond guilty if we pushed for the scan with a broken camera, and missed a newly forming tumor or growth. And I am glad we found this before we put the radioactive isotope in her because I would have been more upset that she was exposed to that for no reason.
I explained to Jesse that we had to go back upstairs to remove the line from her hand. She became really upset. “I don’t wanna take the tubies out! I want to take them home!” As the nurse, who did a great job putting it in was taking it out, Jesse started crying, “But I don’t wanna take a shower tonight! I don’t wanna go to swim lessons tomorrow!”
When I told her that I wouldn’t make her take a shower she calmed down. And luckily this morning she changed her mind about swim lessons, and was amazing in class!
With the IV out, Jesse and I headed home to wait for news of when the scans would be rescheduled.
I did hear from her nurse this morning. Jesse’s blood work looks outstanding! Hemoglobin was 12.5, platelets 298, and ANC over 1900. The ultrasound shows no change in her kidneys.
Funny how things work out… Now I have a better chance to remember getting her SSKI drops in her before the scan 🙂