point yet where we're scratching tally marks into the wall.
Otis is supposed to have an MRI at some point today, but because he was an add-on to the schedule (someone either forgot to order the test or schedule it before we got here) we're still waiting on a time. Otis has been under fasting orders--nothing to eat or drink--since midnight. It's 9:40a.m. now, and for once we're actually glad that he's rarely hungry in the mornings...although we're still pretty antsy to at least get some water in him.
A phlebotomist was in at 8 this morning to draw some more fasting
blood for some of the many send-out tests Dr. L ordered, but they weren't able to get nearly enough blood, probably because he is dehydrated from the fast. We keep bugging the nurses to find out how much longer until we can get him down to anesthesia and then to MRI...and the nurses, in turn, keep bugging the MRI schedulers for information, but still no news so far. We were told that if it goes much longer, they will start O on IV fluids. This was a bit of a relief to hear. He still has the IV port in his ankle they placed on Thursday night. The nurses have been keeping it flushed, so that's still good to go.
We were able to give him seizure med this morning. It's the new one--clobazam (Onfi), and so far, it's not helping. It's hard to say whether it's too low a dosage right now, or if it's that his feeding schedule has been so sporadic since we've been here, OR if it's just the stress of everything he's been through over the course of the past week (or some combination of all of these), but his seizure numbers have been higher and more frequent the past 2 days or so. We have this on our list of things to discuss with Dr. K when he comes by to see us on his morning rounds.
The plan is for us to be discharged once O gets the MRI and wakes up from anesthesia, but given the late timing and the likelihood that they'll need to get more fasting blood from him, we're wondering if our stay might be extended by another night. We are on the waiting list for the Ronald McDonald House for tonight if we do happen to be discharged as scheduled. If that doesn't work out, we'll try to get a room in the same hotel we stayed at last Tuesday.
Ryan spoke to the airline yesterday and after a couple of initial strikes with cranky unhelpful people and one dropped call, was able to connect with a representative who was sympathetic to our situation (Ryan had her at "baby") and who was able to magically change our flight free of charge. So if all goes smoothly, we will be heading home tomorrow afternoon.
With all of the information gathered from the EEG, PET, and MRI, Dr. L will present O's case at the pediatric epilepsy team's board meeting tomorrow morning. Our hope is that we'll have time to meet with Dr. L before we leave town to discuss the outcome (the outcome being whether or not O is a candidate for epilepsy surgery) rather than having to do it by phone.
If you're wondering about the PET results, we were told that there are no clear findings on the PET alone, and that they need results from both PET and MRI to compare and get the answers they're looking for.
It is now 10:25 and Otis and Daddy are snoozing away. Still waiting for news on the MRI.
I'm sorry there are no photos--we've taken some, but can't figure out how to upload them on this &@$!% iPad. Grrr...
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