We're back home. Whew! The news from Chicago essentially depends upon whether you are a "glass-half-full" or "glass-half-empty" kind of person. The CT showed essentially no change. She still has abnormal lymph node masses throughout her abdomen. However, they have not gotten any worse. They told us that 2 weeks was probably just too soon to expect to see any improvement. So we're going back again in 2 weeks to do another CT, and hope things look better next time around. We came home with the PICC line still in, unfortunately. I was hoping to lose that thing with this visit, but I guess I was just a little too optimistic in my expectations. The good thing about that, though, is that she won't have to have a needle poke for the frequent labs she needs to monitor her condition, as they can draw right out of the PICC line. They also decided not to restart any immunosuppression with her as those stinking nodes are still there. Still, so far, no sign of rejection.
We also got a chance to talk with the surgeon about the surgery to correct the blood clot in Anni's portal vein. Basically, he told us that his experience with doing the surgery on patients like Anni who've had living donor transplants has not been great, so he would only want to do the surgery if he's forced to by complications from the clot. The sorts of complications possible are: possible loss of liver due to decreased blood flow (right now, her liver looks very healthy), or major GI bleeds (because the blood clot causes blood to "back up", putting pressure on other vessels). In those cases we would have to try the surgery, with the knowledge that it could not only fail, but leave her worse off than before. So we're essentially just waiting right now. The good news is that the complications mentioned might never occur! We'll just have to wait and see...
The trip itself was pretty yucky. We went in the night before as Anni's CT was first thing in the morning. The first thing that went wrong was that Anni didn't take her nap that day. She was too excited by the prospect of going to the "hossy-pal" (hospital). Given that her last couple of trips have been no fun, it's a real testament to the kindness of the staff there that she still looks forward to going. She kept telling me that she wanted to show her new doll, Carla, to Beata, our favorite nurse. So by the time we hit the road at 6 pm, she was wired from lack of sleep. Frankie, true to form, fell asleep almost as soon as the car began moving. However, after an hour of grumpy Annika's yelling at the slightest provocation (she doesn't do well without sleep), Frankie was awakened. Now Frankie is the sweetest little baby, except if you interrupt her nap time. So... there we were hurtling down the road at 70 mph with 2 kids wailing at the top of their lungs. Pretty soon, Anni realized that she just couldn't compete with a screaming baby, and so she settled down and pretty quickly fell asleep. Once Anni stopped wailing, that helped a lot with Frankie, who was pretty happy when I gave her my knuckle to suck on, until she realized that milk didn't come from that particular part of mommy. By that time, though, she was calm enough for me to distract her with a rattle. So the rest of the trip was peaceful.
One good thing about going to Chicago the night before was that we had a chance to meet the family of a baby who was just transplanted last week. He suffered a collapsed lung over the weekend, but is now slowly showing improvement. They are a very nice family, and reminded me that I need to remember how far Anni has come. I hope that seeing Anni gave them hope for how good life can be after transplant, even when things aren't going perfectly!
We all slept together in a tiny room at the Kohl's house, which is when I realized that Frankie *is* actually a noisy baby at night, after all these times that I've been reassuring people that she's really not so loud. The problem is just that she's not noisy the way you expect a baby to be when she wakes up. Instead of crying, she makes all these happy baby squeals! I was worried that she was going to wake up Joerg and Anni, so I kept trying to stick her on the breast really fast to quiet her down and get her back to sleep, but she kept pulling away to make more of her loud little "I'm so happy" noises. Luckily, they were both so tired that they slept right through it. Anni was pretty happy when she woke up at 7 a.m., and saw that everyone was in the room with her!
So we hurried over to the hospital to get her ready for her CT. There's a lot of preparation that goes into getting a child ready for a CT, so it was 9:30 before we got her back to the room and ready to start drinking the contrast fluid. Of course, Anni refuses to drink the contrast, so we had to get an NG tube placed (a tube from her nose down to her stomach). Anni fought that tube so hard, screaming and crying so hard that sweat was pouring down her forehead. When they started pushing the contrast into the tube, Anni screamed and screamed. Pretty soon, she was throwing up the contrast, mixed with blood. Of course, Annika's favorite position for throwing up is with her face buried in my chest. I joked with Joerg afterwards that I'm just going to start calling my bras "vomit catchers." Anyway, she just couldn't keep the contrast down, and screamed and moaned in between tries. We all felt just terrible for her. After much concern that perhaps the tube was placed incorrectly, they finally gave her a little Versed to help her calm down, and she managed to keep just a little of the contrast in. At 1 p.m. they finally said "enough!" and took her to CT. Frankie and I waited in the room, while Joerg went with Anni. We waited and waited and waited, much longer than is usual for a CT. It turns out that she hadn't managed to keep down enough contrast, so they had to give her extra in the IV. On the positive side, Joerg pointed out that she must be feeling better to have the strength to fight against the NG so hard...
By the time we talked to the docs and got her CT results, it was 3p.m., just the beginning of rush hour, so we *ran* to the car to try to get out of town before the traffic got too bad. Of course this meant that we didn't take time to eat. Since Anni had been NPO (nothing by mouth) for the CT, Joerg and I had just been grabbing quick snacks out of Anni's sight. So none of us had really eaten when we hit the road. I had some cookies that I had made over the weekend with me, so we all shared those to stave off starvation. We had been on the road about an hour, and were almost through the worst of the traffic, when Anni got a look I knew too well on her face. Yup, she tossed her cookies. What a mess! We got off the highway and cleaned her up. Anni looked over at Frankie and said, "Frankie, I spit up a little bit!"
The rest of the trip was pretty uneventful. Anni had a good time dressing and undressing (and dressing and undressing and dressing, etc...) her new Barbies that I got her for the road. We're keeping them in the car for special "going to Chicago" entertainment.
Once again, Frankie was so good on this trip that I told Joerg we ought to call her "easy Frankie." Joerg vetoed that idea, pointing out that that is not the sort of nickname we want following her into her teen years.
In other, non-hospital, news: we are enjoying watching Frankie's sweet personality emerge. A few days ago, she started playing a "peekaboo" game witth her daddy: she would look at him with a big grin, and when he grinned back at her, she would hide her face in my chest. After a few seconds, she would look back uo at him and repeat the game. And she still watches Anni with a concentration that is a sure sign of coming big sister worship.
Anni has come up with her own nickname for Frankie--she's started calling her Frank! But she is very careful to inform people that "Her name is Frankie, but her *name* is Franciska." I don't think she wants other people calling her Frank! Anni has also been doing her best to give me a heart attack with the things she's saying lately. A few mornings ago, she headed to the stairs with an armful of stuff: too much to hold onto the railing as she descended. I called, "Anni, wait for me to help you!" She answered sweetly, "That's OK, mommy, I'm going to fly." You should have seen me run to the stairs, yelling, "No, don't fly!!!" She waited for me, but looked like she thought I was crazy. And then, shortly after that, we were sitting downstairs while I nursed Frankie on the sofa. Anni wandered into the kitchen, and I asked her what she was doing. She answered, "I'm taking care of myself. I'm taking some medicine." Another heart-stopping moment, as we, obviously, have quite a few high-powered meds that could be dangerous even in quantities just a bit over her usual dose. Of course, we usually keep those meds up and away, but I panicked, wondering if we had somehow forgotten to put them away that morning. Turns out that she had just found the dropper for the baby anti-gas drops, so no big deal. But, boy, it's easy to see how little kids can get hurt so fast.