We are back from the hospital stay that I was dreading *so* much. We can't believe that we are back so soon, as everyone at the hospital seemed to be thinking that we would be there at least through Saturday receiving another round of I.V. steroids. So it is fantastic that we are back home! OK, here's the story:
We drove to Chicago on Tuesday, where they admitted her and began prepping her for the tests the next day. My mom came with me, much to the delight of Annika, who thinks Grandma Bond is just *so* much fun. Joerg had to stay home to teach his classes, as he has already had to ask his colleagues to cover for him during our 3 previous hospitalizations. This is the busiest time of year for him, and he really needed to be there. The first night was no fun whatsoever. She had to get another NG-tube (the tube that goes through your nose down to your stomach) to get a special concoction called "Golytely", which is the most inappropriately named stuff ever. It makes you poop non-stop, and there is nothing "light" about it. Of course, Anni fought the NG-tube with all her might again. It took 4 people to hold her down to get it in, and we were all sweating with the effort of it afterwards. The only good thing that came of this was that she was so exhausted after fighting so hard that she went right to sleep once they were done (at 11 p.m.), and did not even wake up when they began the Golytely treatment. However, at 4 a.m. she had such a gigantic poopy that everything in her bed got covered with poop. Luckily, I had already moved out her dollies, but her favorite Princess nightgown got covered. So after that she was awake and pretty unhappy. I moved my cot over by her pump and she, Frankie, and I all curled up together and watched Beauty and the Beast. At 6 a.m. Anni could wait no longer to see her Grandma, so we went to wake her up in the family room, where she was sleeping. By this time, it had been nearly 24 hours since Anni had anything to eat, and 7 hours since she had had anything to drink. So she was *hungry*. But they were at least able to remove the NG-tube in the morning, which made her happy. She finally went down to the O.R. for her procedures at 1 p.m., and I have to say that she was an awfully good girl for having nothing to eat since 9a.m. the previous morning. She was absolutely not about to let the docs take her away from me, though, even after they gave her the "happy juice" (a shot of Versed that turns her into a talkative little clown--actually that's her all the time...) So I got to go back to the O.R. suite with her and hold her until they put her to sleep.
The whole thing only took about an hour and a half. They took biopsies from her liver, stomach, and all throughout her intestines. They also visually inspected her esophagus and intestinal tract. The results of all the tests were:
1) The good news is that her liver looked much better than expected (her lab values had been pretty terrible lately, so it was a pleasant surprise to see how good the liver looked). There is still evidence of rejection, but they said that it looks as if it is slowly resolving, and therefore no extra steroids were needed. Hooray!!!
2) Her intestines were quite irritated, showing lots of inflammation. However, the inflammation looked consistent with some sort of acute infection, rather than a chronic problem. This might account for some of her problems with diarrhea and stomach pain, as well as her liver numbers skyrocketing. They took a stool culture to see if they could identify a particular infection that would be causing this inflammation. It could also be a viral infection, which would be hard to pin down. They are checking for the major viruses that can cause problems for transplant patients. The doctor said that her intestinal tract looked consistent with CMV, which can cause problems. Her colon also bled profusely when the scope went there, but they think that that was just from her abnormal blood clotting.
3) The yuckiest news is that she has developed varices in her esophagus. Varices are essentially blood vessels that have ballooned up because of increased pressure. The varices are a direct result of the blood clot in Annika's portal vein. Because a major blood passageway had become blocked, the blood backs up and causes the increased pressure. The blood vessels in her esophagus have become quite swollen, and put Anni at risk of a major, life-threatening bleed if one of the varices should suddenly burst. The doctor said that most of the varices were pretty small, but that she has one really really huge one. That would be the one that we worry about. However, none of them were bleeding when they went through with the scope, which is good. So we'll have to keep a close eye one her, and hope nothing happens with that.
4) There was no sign of PTLD anywhere. Hooray again!
Anni really didn't wake up from sedation until 8 p.m., when she snarfed down a whole plateful of chicken strips, fries, and carrots...followed by a package of Teddy Grahams and quite a few milk-free vanilla sandwich cookies. And lots of water. She went back to sleep at 11:30, and we all got a good night's rest.
The next morning, Anni was again not allowed to eat, as she was scheduled for a CT scan to check on her lymph nodes first thing in the morning. Of course, the CT lab had several emergency scans, and it was after noon before they sent up the contrast for her to take. Unfortunately, she again refused to drink it and so she had to have another NG-tube placed. Again, 4 people were required and I was so much more nervous, realizing that the tube is going right through the esophagus where that gigantic bleeder is sitting, just waiting to cause problems. My nervousness was increased when Anni began to bleed quite a lot through her nose. We finally did get it in, though. Again, exhausted from fighting so hard (the nurses there place a lot of NG-tubes and see a lot of fighting against them, but they are all amazed at how hard this girl fights them), she fell asleep in my arms.
The CT again showed absolutely no change at all in the lymph nodes. This is getting frustrating, but I am also beginning to worry a bit less about them. Her immunosuppression has been upped to deal with the rejection, and one would think that if the lymph nodes were going to get bigger, that they would have already. Now, why they refuse to go away is another question. However, the results of the CT did not come back soon enough for me to have a chance to talk to any of the docs about it. Essentially, they told me at 5 pm that as long as the CT did not show any increase in the size or number of nodes that we could go. At 6:30 we finally got the message that it showed no change and so we just scrambled to hit the road. We'll talk more to the docs about it next week.
Right now, we are scheduled to go back to Chicago next week to have her checked out again. We'll see if maybe we are allowed to move that back a couple of weeks to give us a little breather from Chicago. Anni was so happy to be released. As we went down the elevator she asked, "Where are we going?" When I told her we were going home, she got so excited she could barely contain herself. As we went out through the main lobby, Anni was holding her Grandma's hand, marching along, chanting over and over in a happy sing-song voice, "We're going home! We're going home! We're going home!" Everyone we passed laughed at her unabashed joy.
While at the hospital, Anni and Frankie both enjoyed going to the infant/toddler play group that the hospital sponsors. It's a great thing for kids there, as the hospital screens all the children very rigorously for any sign of contagious illness, so you know that she's not going to be around any sick kids. She has really really missed being around other kids, so this was a great thing for her. Really just a handful of kids come to it (probably because they do screen so rigorously, plus a lot of kids in the hospital just don't feel up to a playgroup). Anni had a blast, and so did Frankie, who loved seeing other babies. There were a couple of "liver babies" there, babies who were quite obviously waiting for liver transplants (they were very jaundiced and quite small for their ages). Anni loved seeing the other babies, and got very busy bringing them toys and making funny faces to them. She was also eager to show them that she had her very own baby, Frankie! The funniest thing that happened, though, was that Anni became an anti-NG-tube activist! Both of the liver babies were getting continuous feeds through NG-tubes (lots of little ones with liver problems need lots of extra calories, as they just don't grow). Anni was very distressed to see that they had the tubes in their noses, and she asked the volunteers who were there with the babies (neither of them had parents staying with them, another sad thing) if they could take out the tubes, please (have I mentioned that Anni is very polite?). The volunteers explained that the tubes had to stay in the babies' noses until the doctor said it was OK to take them out. So Anni sat for a minute, mulling that over, and then grabbed a volunteers hand and pulled her to the door, saying, "Let's go find a doctor!" The volunteers were definitely not expecting that, and so they scrambled to find someone to play "pretend doctor" for her. Anni wasn't falling for that, though, and so they had to explain to her that the doctors were all very busy right now. So Anni went back to playing, but as soon as someone stepped in the door with a white coat on (it actually was our transplant coordinator coming to tell us her schedule was delayed, not a doctor) Anni ran right over and asked very nicely to "Please take the tubes out to the baby's nose!" (she says "out to", I guess to make it match with "in to"). She was really campaiging hard to make the 6th floor an NG-tube-free place!
OK, well this has gone on long enough. Mostly, we are happy to be home and relieved that they did not have to increase Anni's steroids. Again, I'll keep you all updated as we hear from the doctors.