Getting Used to the Port

We are home! This was a busy but basically very good day. Katie kept us up late at Grandma's, and the four of us spent too much time fighting about blankets, but we rolled out of bed on time and had emla cream on Katie's port in plenty of time. Katie is beginning to make peace with her port. She wanted to show Grandma Kathy and Grandpa Heart her port this last night--a good sign--so we encouraged her to show it off. It was not fun to access her port this morning. She shrieked, and she fought me, wriggling about until Rick finally pinned her down for the actual pick, which takes just seconds. As with so many aspects of her treatment, anticipation is worse than the actual event. Once the (very patient) nurses had accessed her port, Katie was perfectly happy to cooperate and gave up ordering the nurses out of the room. (What do you do with a toddler who has the chutzpah to order an adult out of the room?) T.C. (the teaching doll) wasn't available, so the nurses gave Katie a small muslin doll of her own to color with markers and to keep. Rick helped her decorate her new baby and gave it a port, which Katie then taped over with a bandage much like her own. She was cheerful and well-behaved through the rest of our activities at Fletcher Allen, thanking nurses and charming the anesthesiologist. Joshua did a great job of cheering her along, and we had story time in the PPR (the post procedure room). At some point, Katie will have all her procedures upstairs in the Children's Specialty Clinic, but our current schedule doesn't mesh with the Clinic schedule, so we remain downstairs in the PPR. At one point today I reminded Rick that we will eventually transition upstairs, and he panicked. "But I LIKE the PPR," he whined. I like it there, too. The nurses are so kind, and they are so forgiving. It is helpful to see some of the same faces each week and to feel at home.

Speaking of home, we made the rounds today and visited all of Katie's grandparents in their homes. We had lunch with my parents, we had dinner with Rick's parents, and we dropped Joshua off at Nana's house for a sleepover. Our kids are so lucky to have such incredible grandparents. The kids were very happy to play hide and seek with my dad. Katie didn't really get it--"I'm in here, in the closet," she would yell as Grandpa Heart looked for her--but she had fun nonetheless, and Joshua had a lot of practice counting while Grandpa hid. He could have played for hours. We rolled home to Newport in peace, as both kids napped. Rick worked on his dad's computer while the kids talked Grandma into more cartoons. (Katie loves Max and Ruby. Joshua loves the Wonder Pets.) It was exciting to see Uncle Kim, home from his adventures in Florida, and we are very happy to hear that Auntie Michelle is feeling better. It was a nice treat to see Cousin Colleen, too. Katie was happy to unbutton her shirt each time she saw someone new. She wants to show off her port. It seems we are making progress in this one area at least.

This leads me to the (sort of) bad news. Katie's counts are down. We knew this would happen. The medications Katie has to have kill rapidly dividing cells indiscriminately; low blood counts indicate that the medications are effective, so that is good news. She will have to return to relative isolation in our home, though, and that is bad news for the master mingler. While she did not have a transfusion today, she is anemic. The doctors elected to wait and see since Kate has so much energy. We will see her pediatrician each day for the next three days, so Dr. Bannach can keep an eye on her, and a quick blood test Thursday will determine whether or not we return to Burlington on Friday for blood products. If all goes well, Katie will have a nice long weekend--no shots for three days--and return to Burlington Monday morning.

While the drive is a drag and some aspects of Kate's treatment are unpleasant at best, I remain profoundly grateful to the folks in Burlington who are caring for our beautiful baby. It is a little strange to know the pharmacist at Fletcher Allen by his first name, for example, but he always makes sure we have what we need. The nurse practitioners who work for the hematology/oncology department are fabulous. The anesthesiologist who put Katie to sleep today was awesome. She drifted off quietly while watching a movie; she never even knew he was starting her sedation. This is an amazing team. They are so good to us. WOKO, a local radio station, was broadcasting live from the lobby of the hospital today, and I listened while waiting for the pharmacy. Their "Big Change Roundup" has raised $133,000 for the Vermont Children's Hospital thus far--six tons of change! I cannot imagine a better way to "spend" my change. We are so lucky that this facility exists right in our own backyard.

On that cheerful note, we are still happy to have come home. We are looking forward to a good night's sleep. Katie is still zipping about the house, of course, but I have friendly thoughts about flannel sheets...Good night, all.