knock-knock! who's there? Stress!

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!"

Comments

[Candace]

I'm so sorry to hear this is happening. I'll be keeping you all in my thoughts and hoping Annika is better soon.

[Laurie]

Holy Mother of God.I agree with you. I'd rather be in a hospital where Anthony is known than be at one (albeit a great one) that didn't know my child personally.Prayers!

[KibitzingShiksa]

I can definitely see where the stress comes in. Your little girl is one tough cookie, though. A big cyber hug to all of you, and hopefully Anni will be back to normal soon.

[Beanie Baby]

What a brave, resilient kid you have. I'm sorry to hear about this latest medical problem for you and Anni. I hope they get her back home, happy and healthy and energetic, very soon. I'll keep you all in my thoughts.

[Coralee]

Moorena.......we have all of you, especially Annika, in our prayers. I'm so glad you finally made it to Chicago. Jenn called this morning to be sure I knew the latest. I will be watching for more news.Shelby's Grandma Cori

[Sarah]

I can't believe you got hung up on!!! You made two very good points, wich sounded very logical to me! Prayers for Annika, this has to be hard on all of you right now. I hope your not, but if you are still there on thursday, Anna has transplant clinic, and we would be more than happy to stop by with a little gift for Annika. Let me know if that is ok.

[Becca]

OMG!!!They hung up on you!!!Oh, I am livid. That's our hospital too. Holy cow. I'm glad you are closer to home, but WOW!

[purple_kangaroo]

Oh no! So glad you made it back to Chicago. I'm praying for Annika and all of you.

[Stacy]

Thank goodness for you husband! So glad that he was able to change someone's minds & that you are in Chicago. However great Dallas is, it's much better to be in familiar surrounds, with familiar doctors. I hope they get this straighted out soon. Prayers for you guys!

[Moreena]

OK, turns out that I'm still not able to get on-line as frequently as I'd like, even with the move to Chicago.Thank you for all your thoughts and prayers. It's a scary, uncertain time for us, even though the news every night reminds us how lucky we are.Jen - I don't have your phone number here. If you call again and get Joerg, please leave it with him!Sarah - I'm pretty sure we'll still be here, and we'd love to see you all again. Just a visit is present enough. Annika has been hooked up to monitors for the past 5 days, so she's only allowed to leave her bed for potty breaks and showers. So she'd be overjoyed with visitors, especially you all.

[Amanda M]

Was thinking about you! Anni sounds like she's ready to take on some of her medical care ;), telling the nurse what was going on. Way to go kiddo. Hope Chicago treats you well. The whole nation is super stressed these days because of Katrina...under normal circumstances I can't believe the attending hung up on you, but my guess is that that is not the only surprising response that'll happen this week. Hoe the bleeding and stress stops soon. Cyberhugs.- Amanda, Aunt to Katie, age 7, BA

[Mike]

I'm angry, scared and hopeful for you. We're too far from Chicago and too close to Kansas City to be of much help in any other way (that I can think of), but if you think of anything, drop me a line.

[Anonymous]

God be with you all Moreena. You have my thoughts and prayers. I will be checking today for an update - I hope it is good news.Take care ~tina

[Running2Ks]

Oh Moreena, what a terrible thing to happen. Anni is such a treasure! My prayers are with you and yours. I live in the Chicagoland area, so if you want to talk, or something else, give me an e-mail at kbmailbox1-blog AT yahoo.com~*~HUGS AND PRAYERS~*~

[Kristennn]

Oh Moreena I just read your post and heard about what's happening with Annika, and I am so nervous and scared for you. With all of your well written stories about Annika and tales of her sweet quirkiness and I feel like i've met both of you allready. It's horrifying how fast things can go from normal to potentially life threatening. our only example of that was our brief experience with the heaptic thrombosis but I so clearly remmeber how that felt, and I'm guessing it's about how you're feeling right now. I *hope* it's not quite that serious, and maybe you're still one step away from it being that serious, but that's not much is it. I'm shocked that a doctor actually hung up on you but glad that it helped them to reconsider the plan, and I'm glad you're back in Chicago much closer to home. It's important to go through something like this with staff that you know and trust and you're much closer to your support system which you'll be needing. How scary it would be to go through this from the other side of the country! We're only a couple hours away and I am seriously thinking of driving up to see you, i'd have to bring Havalah though because she's on IV antibiotics for suspected cholcangitus and my husbnad hasn't been trained to do them yet ... and franjkly i don't know that i trust him to do central line stuff ... I barely trust myself! Please feel free to give me a call at 414.961.6190 I would love to talk to you !