She’s making a break for it
Wow – things have happened so fast. Taylor is doing amazingly well and we are adjusting to our new version of a normal life. She was released from the hospital on May 26 in time for her birthday party on May 28. She couldn’t have been happier. She had the whole thing planned – if they didn’t release her she was going to make a break for it. So she figured she’d use her God-given talent and charm her way out of the hospital. It worked 🙂 Here’s how it went down…
Her first embolization procedure was on May 24. She spent a very restless night in the Pediatric ICU (PICU) with Rick, recovering from the procedure. She was able to keep her blood pressure down and responded really well to the treatment. I arrived in the morning to relieve an exhausted Rick. By morning she was up and around. By mid-morning, she was walking around the PICU – not something that usually happens as most of the patients are bed-ridden. This was her first step of her “charming” strategy. The Physical Therapist came to visit around lunch time – another opportunity to do some charming. So off we went on a walk around the 3rd floor of Lucille Packard Children’s Hospital, and then for fun, let’s try some stairs. At this point the PT was having a laughing fit as she rarely gets to work with patients like this. Much fun was had by all as they planned Taylor’s escape route.
Back we went to the PICU and were told that we had been released to the normal floor – yeah! We got hugs and cheers of encouragement as Taylor walked herself out of the PICU – again, not something that happens very often. I was so proud of her. When we got to her room, there was no bed! Normally patients from the PICU are wheeled up in their bed…oops! They got a bed brought in quickly, to which Taylor quite strongly informed everyone “I’m not sleeping in that bed.” Her doctor, Dr. Edwards, arrived in time to hear this. She asked him very slyly “Do I have to sleep in that bed?” Another clear tactic in the war to charm her way out of the hospital. “I feel great. And that bed makes me feel like something is wrong with me.” (batting her eyes and making a pouty face). Dr. Edwards told her she could sleep anywhere she wanted, to which Taylor said “Ok. I want to sleep in my bed in my room.” Everyone laughed! But she was serious. She slept on the couch/bed and I slept in the hospital bed. And I gotta tell ya…I don’t blame her.
The next morning the paperwork was ready and waiting and we were discharged before 10:00 am – very rare we were assured by the nurses. Dr. Edwards stayed late to complete the paperwork so she could be discharged first thing in the morning. We saw all the Docs on their rounds in the morning, said our goodbyes, got our marching orders and we were “outta there”…Taylor was almost running to the car.
We got home to streamers and balloons, meals provided by friends and hugs from everyone. It reminded Rick and I of bringing Taylor home from the hospital when she was born. It is a long story, full of drama (of course) but when we finally made it home, we walked in the door with Taylor in the infant seat. Not knowing exactly what to do with her, we sat her on the dining room table in her infant seat. And left her there….la de da…hmmmm….now what?!?!
We had the same feeling this time. What should we do? Not do? Is she ok? Should she be doing that? Good news is that we’re figuring it out – together as a family. Riley has been a trouper – supporting her big sister and doing what she can to keep us laughing, which doesn’t take much since she’s hilarious.
Taylor’s last day of 5th grade is this Friday – she will start middle school in the Fall with all her friends. This week is full of parties and fun and a big transition for our little girl. Her next embolization procedure is scheduled for June 27. Fingers crossed that everything goes as well as it has so far. We’ll be dealing with this for 2+ years as they work towards total removal of the AVM. So, as I said initially, we’re adjusting to a new normal. We are truly blessed with wonderful children who continue to amaze and inspire us every day, family we couldn’t live without and friends who would do anything for us. Thanks to you all.