OHSU visit

We just got back from Griffin’s OHSU adventure. Wednesday he had his MRI. That was an ordeal. We were to arrive an hour early so that they could put lidocaine cream on his IV sites so when they started it, he wouldn’t feel it. Well, the receptionist came out and put the cream on the tops of his feet and one hand. I thought this perhaps was a bit fishy, but what did I know? After waiting the required hour, we went back and the RN right away said that he had no visible veins in the feet. She tried his hand, which he screamed bloody murder on. She called the anesthesiologist who came and tried the outside of his foot (no cream was put there) and while Fin continued to turn purple with screaming so hard, she too couldn’t get it. They informed us that they now needed to put him under with the “gas mask” as I call it. They gave me a pacifier with some sugar water and I rocked him while he fell asleep until they were ready. When they said we couldn’t go back with him, I informed them that I would be going back with him and I would talk to whatever supervisor I needed to because I would kindly tell him/her what I thought of their inadequate use of the lidocaine cream. Needless to say, I went back with him and held him while they put the mask on him. He never woke up and drifted right off to gassy sleep.

We saw Dr Koch and when he walked in he said, “The good news is that there is a lot of good news!” He was really encouraged because of the fact that Fin’s EEG done on May 9th was completely normal now – the low seizure threshold found in February had resolved. The MRI showed no surprising results and Dr Koch put it in analogy form like this: When Fin got sick, it was like he had fallen and really skinned up his knee. The MRI done right after his illness showed swelling, acute trauma, and inflammation. On the MRI done on Wednesday, none of that was present and instead just the scars remain. Dr Koch anticipates he might forever have those scars, but developmentally, those scars have not affected anything. The area of the brain where the scars are present is a rapidly growing part of the brain and hopefully the scars will diminish as the new tissue forms. Dr Koch was more impressed with the findings with the EEG because although the MRI is a nice picture-taking tool for diagnostics, it doesn’t necessarily reflect functioning. The EEG showed 1hr of pure normal brain function.

He’ll see Dr Koch one more time in 6mo, closer to his 1yr birthday to check his development one more time. If everything goes as he anticipates (which is developmentally appropriate), then he’ll discharge him from OHSU care.

Closing on the best note ever: we have been given the OK to start tapering Fin off of the Phenobarbital. It will be a slow 6wk taper, but eventually he will be Phenobarbital-free. As he left the room, he said, “He’s now thrown into the ‘Normal Kid' Bucket’”. Ahh, finally.