We've just completed all of Jonathan's standard tests to re-evaluate whether he still has cancer / tumor cells or not. This time he had three tests done, the CT scan, the bone marrow aspirate and the MIBG scan (where he has the radioactive isotope injected into his body). The CT scan and the injection was done last week Wednesday (11th Oct) with the first and second MIBG scan occurring on Thursday and Friday. When we normally go for an MIBG scan, the second scan is always optional and we normally get a phone call at the night of the first MIBG scan to let us know whether we need to come back in for the second one. This phone call is important not only to let us know that we need to come in, but to make sure that Jonathan remains NPO - doesn't eat anything after mid-night and stop drinking fluids about 6 hours before going under anesthesia.
Apparently this time, someone dropped the ball and didn't call us so we didn't keep Jonathan at NPO. Around 1 pm I receive a phone call inquiring whether Jonathan and mom were on their way - to which I replied - nope. What followed was an ensue of phone calls between various medical staff and myself. Of course the medical staff recognized that they dropped the ball but they still wanted Jonathan to come in for them to try and get the scan with him awake. As an aside note: the only reason Jonathan goes under anesthesia for the MIBG scan is that this scan requires the patient to be still for anyway between 60 to 90 minutes. Kids of Jonathan's age wouldn't be able to stay still so long so the normal procedure is to put them under.
Unlike the CT scan - which Jonathan does without anesthesia - Jonathan is adamant that he wants the 'sleepy' medicine, i.e. go under anesthesia for his MIBG scans. Friday was no different, and when Gabby asked him if he'll do the MIBG scan without the sleepy medicine he said no and started to cry. This was unfortunate and one of the things I know is that once Jonathan makes up his mind about something it is very hard to get him to change it. The additional challenge in this case was that the idea of 'holding him down' wouldn't work because in this case we needed him to stay still and plus it was a scan so it wouldn't have been possible. At this point I was asking Gabby, "do you want me to fight this battle and tell the medical team he wouldn't be coming?"
Gabby didn't want to have to make a trip to the hospital just to prove to the medical team that Jonathan wouldn't stay still. They are supposed to take our word for it. I fought the 'battle' well but in the end we got word that our primary oncologist wanted us to do it (regardless) - so Gabby took the kids to the hospital for Jonathan to get his second MIBG scan. Afterwards I found out that Jonathan did the scan very well. He lay quietly for the 15 minutes. Apparently the reason he didn't put up a fight was that he was very tired and his back was still hurting from the bone marrow aspirate biopsy from the day before. All I can say is that I feel like such an arse now. I don't know if I'm going to battle for Jonathan's defense in the future.
We have one more test to do - an eye exam - but this test doesn't add any results for confirming whether he has tumor cells or not. This test is to study the effect of the drug on the rods in the patient's eyes. The last time we did the eye exam it was a very traumatic experience. Both tests required Jonathan's eyes to be dilated but one of them required that contacts be placed inside his eye and subjecting him to bright flashes of light (and yes he was awake). It required both Gabby and I to hold him down. The silver lining for the tests on Wednesday is that he shouldn't be getting the (same) test with the contacts so hopefully it should be a less painful experience.
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