Wednesday the 6th labs came back with another spike so Thursday afternoon at 10 minutes till 5pm (I was on my way to the swim meet) I got an email from Meredith, Shayna's transplant coordinator, that the doctors want her to have a liver biopsy. I was proud of myself for not freaking out about having to wait until Friday to start making plans when all the offices opened again. We initially tried to schedule it in Roanoke but never could get Interventional Radiology to answer the doctors questions so Monday we made plans for a mad dash trip to Pittsburgh. A couple calls to friends there and we had a place to stay and someone to watch Elijah Wednesday. Yet again, I went into something rough feeling blessed and fortunate.
We left just after 9am on Tuesday and got to the Hertzmans' just after 5pm. (The Hertzmans' were the family that made Pittsburgh home-ish and Shayna's first birthday a party.) Shayna took to Adam right away, following him around and playing with him on the play set in the back yard. She loved all the new toys as Monica and Adam have two older boys, Noah who's 9 and Jonah who's 7. Noah even let Shayna have his room for two nights while he bunked with his brother so I didn't have to share the guest room with both kids.
Wednesday morning, I had both kids at Children's Hospital of Pittsburgh (CHP) at 6:28am, a whole 2 minutes early and I have never even been on time with both kids in tow to anything before that. Our friend from Blacksburg Katie, who moved to Pittsburgh a year ago, showed up at 7am to get Elijah. Her two kids (5yrs and 3yrs) stayed home from summer camp to "help" her take care of "baby Elijah." (It was fun to hear about their learning experiences afterward. (They were shocked to see that Elijah mainly easts milk, where it comes from, and that they once nursed just as Elijah does.)
My time with Shayna went amazingly well. She asked for water a couple times in the morning but didn't complain when I told her she could have any because "it would make it hard for the doctors to look at [her] liver." She talked and played with everyone that came in our door and even got tossed in the air a bit by one of the doctors. We were in the procedure room right on time (another first) and an 1 1/2 hours later I was sitting by her side as she slept in recovery. She whimpered when she eventually woke, asked for milk but was happy to settle for juice, then she climbed into my arms. She whimpered a little again, I said, "you feel weird don't you? It's okay because Ima is going to sit here and hold you until you feel better." The after effects of anesthesia can be quite disorienting for kids which is why Shayna usually screams afterward, but that statement seemed to appease her. For the next 1 1/2 hours, I held here while she drank juice and we watch a movie. Then she was Hungry. She ate French toast, a mango, and 1/2 a cup of blueberries that I had brought and 3 chicken tenders with ranch dressing from the cafeteria and drank lots of water. At the end of our 4 hours of "laying still", Shayna went to the play room and happily played with a volunteer while I pumped. Her friendliness and go-with-the-flow attitude amazed me all day. We had another 2 1/2 hours of waiting around at the hospital before her ultrasound appointment that afternoon so we ran and shrieked and tickled and laughed all over. She even made a little friend. The ultra sound went smoothly and she happily walked out with 5 new stickers. It was a 10 minute drive in but a 30 minute drive home since were were leaving just when rush hour was starting.
It felt so good to just lay in the grass for half an hour while Shayna played on the play set at the Hertzmans'. After Katie brought me Elijah, we got to talk a bit while I flopped around getting the kids to bed. It was wonderful to speak with a normal adult after spending all day with a 2 1/2-year-old and lots of medical staff. I managed to finally get them to sleep late again then got ready for driving the 325 miles back home the next day after our morning clinic visit. The thing that kept me from losing my mind: Adam washed all of our various plastic containers, sippy cups, and bottles.
The next morning we saw Dr. Sindhi who said the ultra sound looked great (no flow issues of bile or blood) and the early results for the biopsy showed no rejection; though, testing would continue for the next few days including looking for viral attacks. We met our new transplant coordinator Meredith who is very nice and shaping up quite nicely to be a good transplant coordinator. She doesn't answer questions as directly and concisely as Alice did but she shows promise there. The other important thing is attitude when reacting to parents' questions, not reacting to our questions like they're silly and juvenile, and she has a Great attitude.
Here's some pictures but I'll have to finish the story another day.
Making friends: She and Ava played for 1/2 an hour while us moms got a break.
Sharing stickers.
Elijah became a sitting baby that week. He was still tippy on Monday, could sit for 10-15 minutes when not tired on Tuesday, and could pick things up without falling over on Wednesday. I was blown away by how quickly his skill improved.
Playing with Katie on the floor at the Hertzmans'.
Listening to Noah play. She loved it. I hope she remembers these things and wants to play a musical instrument some day.
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