Moving Forward: "Annual" Pittsburgh Pilgrimage

I say "annual" because it's actually been almost 2 years since we last visited the transplant folks in Pittsburgh (July 2011) and, theoretically, we're supposed to come up around her transplantiversary. We got to skip last year's "annual" visit by seeing our awesome local GI doc in Roanoke Dr. Hart. He and the folks in Pittsburgh get along great, respect each other and communicate well. The other issue is driving to Pittsburgh in the winter is like rolling the dice on weather and therefore road conditions with the odds against us. With all this and Shayna's astounding good health, we were able to enjoy some of Pittsburgh's beautiful spring along with our doctor and hospital visits.

Shayna and I had a wonderful trip, just us ladies. Elijah stayed home with Nahum and Tall Oaks Montessori (where he stayed until 4:30/5 each day instead of the usual morning preschool only). It was the easiest drive I've ever done with a kiddo in tow. Shayna was an excellent traveler, able to stay in the car for long periods of time and communicate bathroom, food/drink, and entertainment needs easily. There were even a few times when she had me turn the car dvd player off so she could look out the window, daydream, sing her songs or just chat with me. We drove up two weeks ago Sunday and checked in with labs and a clinic visit Monday morning. The transplant crew continues to be very happy with Shayna's progress and present health. We also talked about the possibility of a little plastic surgery to goofy scar folds if she requests it as a teen (or older) and their immunosuppression weaning program. Once Shayna is 5 years post-transplant, she can be evaluated as a possible candidate for Dr. Sindhi's program. She has to have been rejection free for the last 3 or so years and show good indicators on a blood test he has designed. (Transplant science is still so young that it's thrilling for me to watch it unfold from such a close view point.) It's still a couple years out for us but an exciting possibility since Prograf does not come without its side-effects. The one of most concern is kidney damage, which they check for every year and Shayna's kidneys look perfect so far.

April 15: Relaxing after labs with some french toast breakfast at Children's Hospital of Pittsburgh.

April 15: Clinic visit with our coordinator Stacy and PA Patty examining Shayna.

April 16: Waiting for her procedure.

Tuesday, Shayna had her umbilical (belly button) hernia repaired. She was scared they were going to remove her belly button as it's hard for a 4-year-old to understand all the complex things under the skin. An oral dose of Versed did the trick to relax her. After that she smiled and giggled at anyone who looked at her. The procedure went smoothly. There was a little intestinal adhesion to hernia tissue so I'm glad we were in Pittsburgh since it was all routine for them. After the procedure, the nurse got nervous because of the way Shayna acts coming out of anesthesia (crying and grumpy) so gave her a large dose of Fentanyl (narcotic in the Morphine family) without notifying me though I was standing right there demanding to know what she was doing. Pissed me off and knocked Shayna out for another 2 hours. It did make Shayna chipper when she woke up since the anesthesia wore off while she was in her Fentanyl slumber but we could have left at least an hour, it not more, before we did with the extra drugs. Shayna was a trouper as usual and was playing, gently, outside in the evening.

Making the day extra difficult, my virus took full hold on Tuesday. My ears were stopped up so I had a lot of trouble hearing and was popping ibuprofen and tylenol all day to control the pain, I started to get dizzy with anything other than steady movement, and achiness and exhaustion took over my body. We ended up going to a MedExpress where the doctor said it was a virus going around that even she had experienced and because I was pregnant I could take anything but tylenol or ibuprofen. I'm still waiting for my ears to fully open up and in the mean time another virus has taken hold making it almost 3 weeks of illness for me. Thank goodness Nahum has mastered putting both kids to bed so I can get a break in the evenings this last week.

On to happier times: Before we left Pittsburgh, Shayna and I visited the zoo and aquarium. I pushed her all around the hilly winding zoo while she marveled at all the animals. She was scared of the lions, tigers, and rhinoceros so didn't want me even going near their fences. She was fascinated by the elephants, giraffes, apes, and penguins. I loved that part. We even saw a mama gorilla with her 5-day-old baby. Shayna made me whisper as we passed the sleeping black bears. We walked through the shark tunnel to watch the sharks circle at eye level and swim over our heads. There were many other animals to visit and love and a few places where even a stiff moving 4-year-old could climb. She was so good about staying within her physical limits without a word from me. After the zoo, we drove home and again Shayna was an awesome traveler.

April 17, 2013 and March 2, 2010: She's grown a bit in those 3 years.

Being silly in the tunnel through the shark tank.

Again, the Hertzmans played a pivotal role in our Pittsburgh trip. It was so wonderful to have a house with normal people around to stay with. Shayna and I did great sharing a room. (She wanted to continue once we got home as well.) Shayna was scared of their new dog Cookie which made the dog scared of her but they were very nice to Shayna putting the dog in the basement a bit more often so Shayna and I could be downstairs in the early evening. Our bedtime (I went to bed with Shayna and loved going so early) coincided with their dinner time so Cookie could join the family for their normal evening routine. Adam (the dad) enjoyed reading to and talking with Shayna so I even got a few breaks while I listened to her laughter in the next room. Both boys Noah (11) and Jonah (8.5yo) were great with Shayna; though, they were a little over enthusiastic to explain many scientific things to Shayna (astroids, dinosaur extinction, electricity, etc). Shayna did her best to follow along. Monica was her usual sweet, steady self. I am so thankful they were able to open up their house and lives for us like that. Even with normal/easy doctor and hospital visits, my stress level is quite high as I always have to be on alert. Having a real home to relax in every afternoon/evening was essential for making it a joyful trip.

April 15: Reading with Adam and Jonah. Adam had both kids giggling with his voices for the animals.

Elijah was not forgotten during our adventure. He was a trouper, enjoying a full day (8-5) at their montessori school without any issues, and he and Nahum really bonded. Elijah's such a mama's boy that it was nice to give him a chance to realize he can get the same comfort from Nahum. I need to go away more often.

The other exciting news about Elijah: NO MORE HEART MEDICATION!!!!!!! I was cleared the week before Pittsburgh to discontinue his 3x/day flecainide as long as I check his heart rate 3x/day for the next month. It's been a week without meds and we've had no SVT episodes so far. He does look for his heart after I listen and tell him it sound beautiful. If he has an episode, we're just put back on flecainide and have to wait another year before trying again.

The deer didn't eat all my tulips this year, and I had put a lot more in the ground last fall to tempt them. They hit full bloom this last week. I took some pictures to try to compare to last year (still have to find those photos). It's been wonderful to have a cool, normal spring. While we haven't been outside as much, my gardens are perfect. The kids and I even planted mixed greens and sugar peas right on time this year. Once I'm feeling better, I have a lot more work that I'm looking forward to in the yard. Then, I have to refinish the deck. At least Shayna can help with the staining while Elijah naps.