Well, #4 is complete. Love it. There have been annoying hiccups in the journey, such as being detained by US security at the airport for hours before someone coming in and apologizing for the mistake, or delayed flights, forcing us to miss connecting flights and travel for 20 hours. Or showing up at the hospital at 7:30am (which is 4:30am our time) to find out Trey’s dose has been pushed, then showing up in the afternoon on time but waiting for over an hour before going back for dosing (during which time Trey cannot eat). But in the bigger picture, these are minor annoyances. The big picture is that Trey has 30mg of enzyme in his brain!
Because this was Trey’s fourth dose, the trial no longer requires waiting for lab results to come back with the white count before dosing. So, Trey was asleep less than 15 minutes for the lumbar puncture & dose, which is awesome. Now he’s in hospital until Friday, check up Monday and fly home.
This month, there’s not a lot more to update. Next month is going to be a doozey. We fly to UNC March 4, regular appointments March 5, and then Trey gets an IT dose March 6, during which time he will have an IV placed for the duration of his hospital stay until Friday, March 9 (keeping an IV in for 4 days and 3 nights with almost hourly blood draws is no fun).
Trey will get a new IT port placed March 13 (he had his first port removed Oct. 28, 3 weeks after placement and a week and a half after his first intrathecal dose, due to infection. He missed his November dose because of the infection and has had his December, January and February doses, and will get his March dose, via lumbar puncture. I was hoping a new port might be approved before we had to put the old port back in because it has so many issues, but new port approval looks like it is still many monthes away, and popular opinion seems to be that too many lumbar punctures is a bad idea, so we will put back in a less than perfect device). I’m really nervous about this surgery and device, given what happened to Trey and all the issues the other kids in the trial have had with it, but I’m not feeling a lot of alternative options.
We’ve got to stick around UNC for surgical check up and a neuro exam until March 18. The following week we have off and then we’re due back at UNC for end of study tests (all the same stuff he had to qualify for the trial in August: echo, EKG, audiology, MRI, ABR, lumbar puncture to test pressure in the brain, neurocognitive tests etc etc etc.) March 27-30. Then Trey gets his next IT dose April 3! After that 5 week trip to UNC, we’ll be finished with the 6 monthes of 10 day trips and onto five day trips: fly Sunday, check ups Monday, dose Tuesday, stay in hospital overnight and then fly home Wednesday or Thursday! Yahoo!
The above picture was taken this past Friday at the stable where Trey will begin horseback riding lessons upon our return in April! It took me two years to get enough tests (X-rays and MRI’s) and see the right doctors before I could convince Trey’s metabolic doctor to sign off on this activity. We’re both EXCITED!
