Another week

Rylie had her 7th ERT on Friday . . . but without her catheter! On Thursday morning, I opened Rylie's P.J.s and her tubes were hanging out. I still do not know how it happened, but I've been concerned since the beginning that the catheter was not securely placed. For the treatment, the nurse used a typical IV since we didn't have the catheter access. But now Rylie is scheduled another sedation and surgery for Tuesday to replace the catheter in her chest. Lyle and I are going to see if we can reschedule the surgery for when we will have to sedate her for another MRI in Minnesota in another few weeks when we go for the transplant. This would mean another three treatments without the catheter, but the IV seemed to work okay on Friday. Although Rylie doesn't like to be poked and have a big IV on her hand all day, it might be better than another morning of fasting and sedation. I'm trying to weigh the options and make sure we are doing the very best thing for Rylie. Yet again, it seems like there aren't any good options. Option 1, surgery right away and avoid three pokes. Option 2, surgery with another needed sedation and avoid fasting an additional morning and the risks of sedation (which are higher for Hurler patients). The latter seems better, but I still wish there was an option 3.

On Thursday Lyle's grandma Dorothy passed away. I'm glad Rylie had several opportunities to sit on her lab and babble a song to her. We believe Rylie got her red hair from Dorothy, and we pray that she will also inherit her strong faith and commitment to God. We're in Wichita until late Monday for the visitation and services.