One LONG Day!!!

I must say, today was one of the longest ones we've had since we've been here. We got up to the hospital at 9:30...fully expecting to have drs. coming around doing pre-op stuff. Then, as you read in my previous post, surgery got officially scheduled for Friday. Next, we had to wait for a dermatology consult. While we were waiting, Tom and I decided to bathe Jaime. You can see his skin breakdown in the photo of him undressed. After his bath, Cayse had to change his bedding, so Renee (R.T.) had this WONDERFUL idea to let ME hold Jaime while she held his tubes and Cayse changed his bedding. Thank you so much, Renee...it was great to hold Jaime again!
After that, Cayse and I swaddled him, put his star music box on (thanks Bev & Jeanie-Jamie LOVES it) and he fell asleep-you can see that in his "after-bath" photo.
Finally, after 5 hours, derm came. They are thinking that Jaime may have something called "Epidermolysis Bullosa (EB). It is a rare disorder caused by a mutation in the keratin gene. The disorder is characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma."
We do not know this for sure, but they are taking the EB precautions just in case and Jaime will be having a skin biopsy tomorrow afternoon. We were told that this biopsy will be sent to Stanford for an electron microscopy. This takes a few weeks, but will confirm this diagnosis. Also, the dermatologist sent a wound culture of his facial sores just to check them for any infection. A new dressing plan has been implemented where no adhesives will physically touch Jaime's skin. Mr. Jaime sure gave Cayse and the R.T.'s a run for their money today!
Jaime's vent was re-taped just before shift change tonight. The R.T. girls were so clever in coming up with a new way to secure the vent without tape. (Thanks, Ladies for your time and patience with the new dressing!) You'll see the clever new set up in the photos. Having said that, we're not sure how stable the vent will be, so Mr. Jaime has to be sedated for a while until we know for sure. While Tom and I HATE seeing him so sedated, we know that he won't be in pain, so overall it's a good thing. Cayse surround Jaime's bed with a screen, to try and keep the noise level and lights down, hoping to keep him calm without too much sedation. We'll see how that works!
So, now it's 8:30, Tom and I came back to the house at 7:30 for dinner (leftovers for me and cereal for Tom!) We're just relaxing a bit before we go back to the hospital to say good-night to Jaime.
That's today's update. Like I said, it's been a very long, exhausting day!

Please continue to pray for Jaime and Carter, as they both seem to have had rough days today!

Thanks,
Sheryl