IV Dose #2...

Tuesday, September29, 2009

Torie, Mom and I headed over to Denver on Monday and stayed with my Aunt Collette and Uncle Dick. Well, with Dick. Collette again said "Oh yes, I'd love to have you stay" so she went out of town again! Huh. Maybe it's me. Anyway, it was a beautiful drive over...tons of yellows, golds, greens, and oranges. I think sometimes my travels have caused me to forget what a great state we live in. I'll have plenty of opportunity to admire it in the upcoming weeks, though. This was our 1st infusion at The Children's Hospital (TCH), and we'll continue weekly until Minnesota is ready for Torie to start stem cell transplant. Hopefully mid-November. They are working on a donor match as I post. Anyway, we arrived at TCH bright and early Tuesday morning. We had just barely gotten to our room in the infusion clinic when Uncle Shaun showed up! And he stayed all day with us. What a great guy. He hates hospitals. We're pretty lucky to have him. Kristin was our nurse du jour. She came in and Torie stuck her leg out and said "hug leg" for the blood pressure cuff. What a great little patient already! But it never takes long with kids. She had no problems with her infusion, and no reaction. Dr. Thomas stopped in to say hi and it was nice to visit with her. Too bad we didn't get to see Janell, the Metabolic Genetic Counselor. She's done so much for us, she seems like an old friend already. Riley, another little Hurler dolly was there the day before. Maybe one of these we'll get to meet her too. So, we finished up about 4:00 and headed back to Collette's and guess what? She came home! While we were there! I made my Grandma's secret recipe fried chicken and biscuits and had a fun relaxing evening. We were back on the road this morning to come home so I can get some laundry done and get ready to head back next week.

We've been having some problems with Torie's Hickman catheter (Her central IV line). The last few days she's had quite a bit of blood oozing from the insertion site. OptionCare (the home supply company) sent 100 unit Heparin to flush her line with. Heparin is a blood thinner that prevents clots from building up in her line. If it clots off it won't be able to be used, and she would have to have a new one placed. And we don't want that. So, after talking to Dr. Mike, we're going to try 10 unit Heparin and see if that helps.
She's been so good about not pulling or tugging on her line or the dressing, but here she's showing her line to Uncle Shaun. She's such a brave sweet tough trooper. We are so lucky to have her and I hope with these posts you can feel like you know her a little too. Thanks for reading and stay tuned. All we hope for is lots more to come!