We went to GOSH on Tuesday for Fintan to have an electroretinogram (I may have the wrong name here) - electrodes were placed on various parts of Fintan's head and he was then exposed to flash/pattern stimulus and lights and the results recorded. He was allowed to watch a DVD when there was no stimuli present, but as this wasn't often he soon got fed up and kept asking to go back to his Mickey Mouse DVD! The test took about 45 minutes, but felt a lot longer! Fintan then needed a blood test; not an easy task, but after a bit of screaming and a few tears the job was done and we headed home.
We returned to GOSH on Wednesday morning for an early 7.00 am start. Due to the cancellation of the first procedure of the morning, Fintan went down to theatre earlier than expected at about 10.00 am and was back in recovery by midday. However, before he could return to the ward he had to stay in recovery for another hour or so because the incision in his groin (where the catheter to administer the drugs was inserted) continued to bleed and pressure had to be applied to the site. Fintan had the occasional moan, but was very tolerant of all the fussing around him. Back up on the ward he had to remain semi-reclined in bed for 4 hours, but was able to watch TV and have something to drink and eat.
Taking it easy
Before treatment we had been made aware of all the possible problems that could occur, but post-procedure everything appeared fine; no swelling around the eye, no droopy eyelid and no immediate vision deterioration. However, once they got a urine sample from him it became more clear why they had been chasing him for a wee all afternoon! His urine showed a high glucose level so blood sugar levels needed to be checked; the result was high and it was then explained that the steroids given in theatre and the follow up steroid medicine can affect blood sugar levels and would need monitoring for several hours. Fortunately, we had come prepared for an overnight stay!
By midnight Fintan's blood sugar levels had reduced and remained low, so after a very long Thursday morning, and a brief visit from Elmo, we were allowed home after lunch. Fintan has to have a daily blood sugar level test until Monday and as long as it remains stable he will then just continue with steroid eye drops until his EUA at the Royal London in 4 weeks time.
