We are now in Chicago at Children's Memorial. They flew us here on a medical transport. I sent Frankie with my parents on Saturday morning, and they dropped her off to stay with my sister until we know what is going on with Annika.
Here's what's been happening:
Frankie, Annika, and I arrived in Dallas on Wednesday. It was a long day of travelling, and we were all exhausted. We did make it to Aunt Pat's visitation, though. Annika wanted to go say "Goodbye" to Aunt Pat, and so I took her in to the viewing room. Probably a mistake, as she spent the next hour or so sobbing while Frankie sang, "Anni, Don't Cry" to her.
My mom calmed her down by telling her lots of "Aunt Pat stories," which Annika loved. That night, she went right off to sleep, exhausted from the crying and the travelling. Frankie was a bit more difficult, as the excitement had left her wide-eyed. I had to walk her up and down the hotel hallways for 30 minutes before she finally relaxed.
Annika woke me at 1 a.m. complaining about her tummy. I took her to the toilet and checked the contents, as I do everytime she has a poop. When I saw how dark the bowl looked, my heart beat a bit faster. I turned on the bathroom light so I could see better, which elicited much grumbling from Annika. With the light on I could see that the poop really was completely black. Wiping her bottom, I discovered that the poop was sticky and just the wrong consistency. Every liver mom knows to look out for tarry, black stools as a sign of a G.I. bleed, but I still wasn't sure if that was what I was looking at. So I took her temperature, 102, and gave her some water. I considered giving her ibuprofen for the fever, but I had left my syringe at home, and I was also worried that it might irritate the bleeding, if that was what was happening. Worried, I put her back to bed and watched her for maybe 30 minutes.
A few hours later she was up, the fever gone, and back to her usual self. I breathed a sigh of relief and took the girls down to breakfast. Annika, normally a great eater in the morning, declined everything. Finally I got half a yogurt into her. When she rushed to the toilet with my mom, I followed her in. Another check, and again the suspicious looking stool.
It was time to leave for the funeral, so I loaded the girls into my parents' van and borrowed mom's cell phone to call Chicago. The doctor there told me to take her to the E.R., but agreed that I could go for an hour to the funeral as long as Annika was acting her normal self.
I had to sit on the side of the church away from my family during the service. Annika was in the kids' room with her sister, and, although I had explained the situation to the woman there and made sure she understood that she should dial 911 at the least suspicion, I still felt like I should pop in myself every 5 minutes or so to make sure she was still looking fine to my more experienced eyes.
Pat's service was very moving, especially the tribute written by her son, Cliff. He told wonderful stories about Pat as a mother, including her many misadventures with the oven. My brother-in-law, Grant, played his guitar and sang a song, and I got to sing a lot of hymns that I have not sung for many years.
I had decided to skip the graveside ceremony and the lunch afterwards in order to get Annika to the E.R. We went to the closest hospital, but we were only there a bit over an hour before they had arranged to ambulance us to the Children's Medical Center of Dallas, where they have a pediatric liver transplant team.
The labs run determined that Annika had, indeed, had a bleed, but she seemed fine and the hope was that the bleed had already stopped of its own accord. The doctors there decided that they would give her a blood transfusion as well as platelets to get her blood counts back up, and then release her to fly back home and follow-up with Chicago. Just to be safe, they decided that they would keep her hospitalized until it was time for us to go to the airport.
On Friday night around 8, she went to the toilet and filled the catch basin with bright, red blood. She repeated this scene about every hour for the next 8 hours. Finally, at 4 a.m. on Saturday morning, black clots started showing up, and by 9 a.m. she was back to black, tarry stools.
Needless to say, we missed our flight on Saturday morning. The doctors there decided that she needed to be transferred to Chicago via a medical jet, and began making the arrangements. Frankie had been spending the past few days mainly in the company of my sister and her family, and my parents decided that they would drive Frankie to Kansas City, leaving her at my sister's house. It was incredibly hard to send her off like that, but I've received regular reports that she is happy and having a great time and is even acting like a potty-trained kid for my sister.
After a long and grueling day waiting to see if the bleed was truly over, and waiting to hear what the plan was from Chicago, we finally were told that they would transfer Annika at 11p.m. that night. An hour later, I got a phone call from the attending doctor in Chicago telling me that they had changed their minds. Annika would be safer staying in Dallas until she could be discharged.
I was completely shocked. We had planning on this transfer, and acting accordingly. Although the facilities in Dallas were wonderful, and the doctors fantastic, I wanted nothing more than to be in Chicago, where I know the doctors and the nurses and they know Annika. We have no idea what is going on or how bad this is going to get, and it's simply more reassuring if you're someplace familiar. Someplace that knows Annika inside and out. Not to mention someplace that Jörg can get to easily.
And then it hit me that there were two ways this situation could play out:
1)Annika gets worse. In that case, something dramatic would have to be done, and I would simply rather have that done by Annika's regular doctors.
2)Annika gets better. Hooray! But, oh no. Then I would have to take Annika back home on a regular commercial flight. Annika looked completely fine in the hours before she had this huge bleed. So how was I to know that I wouldn't get her up in the air and then, suddenly, a massive bleed? With only flight attendants to help? No thanks.
So there I was on the phone to the attending in Chicago, and I was trying to explain the two points above to him when he evidently grew weary of listening to a freaked-out parent on a holiday weekend and he hung up on me.
Yes. Hung up on me.
I went out into the hallway and found a quiet corner to cry for 10 minutes or so. Then I went back to the room, where Eric and Cliff were entertaining Annika, and called Jörg, who did not cry, but instead began tracking down a patient representative in Chicago to register a complaint. Then I went back to my little corner and cried for another 10 minutes.
A few hours later, minds had again been changed and we were scheduled to be transported by medical jet the next morning.
So here we are. There probably won't be any major decisions made until Tuesday. Annika is still bleeding, as evidenced by a pretty big drop in her hemoglobin this morning, but at least it's not pouring out of her behind.
While we were in Dallas, Annika decided that she was old enough to take over calling the nurses herself. While she was sitting on the potty filling the bowl with her blood, she had the door open telling Cliff and Eric Knock-Knock jokes. When I told her that we had to call the nurse to tell her about the blood in the toilet, she, of course, insisted that she do it herself. She pushed the button and, when the nurse answered, she said, "Hi! Blood is coming out of my bottom! And I was making some jokes!"