ERT #2 - Shands at the University of Florida

So Gracie had her second ERT treatment yesterday, and true to Gracie-style, she did beautifully. On the downside, it was an incredibly long day. :(
We got to Shands at 8 am but we were not called back for anything until 9:45. Yuck. They got Gracie's weight (she's over 19 lbs now! Wowza!) and her BP and temp before they shuffled us down to a room for a once-over exam. More waiting. While we expected to see Dr. Kelly at this point, a PA came in and gave Gracie a looksie before moving us to the Infusion Room. This is a large room with a bunch of big pink chairs where everyone and their brother are getting infused with blood, platelets, drugs... you name it. You'd better believe that each time some else walked in to have their own treatments, they warily eyed us and our potential disturbance.

We met our nurse there, Kathy, who was a doll. We loved her from the start. At that point she was able to call down to Pharmacy and let them know that we had arrived. Apparently, our treatment is so expensive that the Pharmacy folks won't even touch it until it is confirmed that we're on site. Craziness! So crazy in fact that they called the nurse back AGAIN and asked her if she could physically see us as a second confirmation before they would begin mixing the enzyme. Geez, paranoid much?
We were given our place in the infusion room and they finally started prepping Gracie for the treatment. A dose of tylenol orally and then Benadryl by IV. This took forever! 45 minutes to give her the Benadryl. :( Then they follwed up with a dose of Hydrocortizone to ward off any rash.
Finally at 12:30 pm they started the Enzyme drip. It was not until after that was going for about 30 minutes did we meet Dr. Kelly. She's very nice and she was great with Gracie and very sweet so we played a bit and settled in for our long treatment. Gracie snoozed in my arms for about 2 hours while we chatted first with our wonderful nurse and then with a really nice doctor who is doing a clinical study on Prostate Cancer, totally unrelated to Gracie's treatment, she just wanted to hear our story. They were both moved to tears after hearing of our path to diagnosis and the persistence of our beloved Pediatrician, Dr. Cortes. :) Warm fuzzies all around.

At about 3 pm, Gracie woke up and they brought a crib in so we could lay her down so she could play. She did... she played and smiled and babbled her way through the next couple of hours with little complaint. By this time, the room had completely cleared out and the clock is inching toward 5 pm. We saw Dr. Kelly again and she and Gracie had a few minutes of smiling and peek-a-boo before she bid us goodbye for the day. Kathy (our nurse) and Ginny (another Infusion nurse) then came over to change Gracie's dressing. When the original dressing came off, poor Gracie's skin was all rashy and inflamed. Thank goodness it was only in reaction to the bandage and not the Enzyme treatment. They decided to give her a different dressing that should cut down on the irritation and they put it all back together, flushed her lines, and finally sent us on our way at 5:45. Phew.

On to Target for Mommy's retail therapy and then a quick swing by Great Mema's house to pick up a delicious roast for dinner! Yummy! Thanks Mema! We fell into bed around 11- totally beat.

So while things were slow to start and that was quite frustrating, we were generally okay with our treatment at Shands. Kathy was the total bomb and I am happy to say that she will be our Infusion nurse every week. Yay! She also has got a plan in place to speed up our start times for future treatments so that hopefully things will go much more quickly as the weeks go on. Go Kathy!

So all in all, the Shands treatment went fine.

Report Card
Gracie - A+
Shands - B-

Shands needs to thank their lucky stars for Kathy who was great for pulling up their average. I plan to write a letter to her supervisor regarding the great care she has given us.

Anyway, to sum up- long but not too shabby. On the agenda for today- a visit with Dr. Cortes! Wooohoo!