Last night Jörg brought Frankie up to Chicago, along with my mom and dad. I practically ran to the double doors of the PICU to meet Jörg and Frankie. It was one of those happy tears moments. I took Frankie in my arms and held her tight against my chest, marvelling at how much her hair had grown and laughing at her new favorite phrase, "Hey, guys!"
I brought her into Annika's room, and, to my amazement, Anni's eyes filled with tears, too. Of course, my first thought was, "Oh, no! She's in pain again." But Annika just held out her arms and said, "Hi, Frankie." After 3 days of Annika being completely non-verbal, except for the occasional "Please leave me alone! Everyone
!", her voice was still hoarse as she launched into a conversation with her little sister. For her part, Frankie was not sure what to make of the all the tubes, lines, and monitors surrounding her sister. She perched in the bed next to Annika, wearing her serious hospital face.
Anni, noting Frankie's reticence, asked, "What's wrong Frankie? Are you thirsty? Do you want a drink?" Frankie nodded a solemn "yes." And her sister, not having been allowed to drink herself for the past 5 days, asked the nurse to please bring a drink for Frankie. Anni handed the cup to Frankie, who took it with the care and respect usually reserved for high communion.
Deciding to have another child after giving birth to one with major medical issues is not an easy call. If Annika's liver disease had been genetic, we definitely would not have done it. Even so, we still held our breath during the pregnancy, knowing that the odds were on our side to have a healthy child but fearing, anyway.
And now we have our little Frankie, robust and healthy and full of sweetness. But I do have to admit that this ordeal has been even harder for me, emotionally speaking, knowing that I had such a young one still at home who was certainly confused by Annika's and my sudden and complete absence. Annika, too, missed her new little companion and constant fan club, which perhaps made this all harder for her, as well.
But seeing them together again for the first time yesterday was a revelation. No matter what the difficulties, their love for one another is nothing but good for them both. The lift in Annika's mood when Frankie climbed into bed with her was nothing short of miraculous, and Frankie's great care and extraordinary gentleness with her big sister speaks of a maturity and empathy that is a marvel in a 2-year-old.
Annika's bleeding finally stopped last night. She is on the highest continuous dose of octreotide that she has ever been on, though. The plan is to start weaning her off the octreotide slowly and carefully tomorrow, hoping that she will be off of it entirely by Tuesday without the bleeding starting up again.
The doctors are still trying to find the cause for her mysterious fevers. All the blood cultures so far have been negative, but they decided to change out her I.V. access lines anyway, just in case they were harboring bacteria. The plan was to rewire her central line (up by her shoulder), and to completely pull her PICC line (those are both large, longer-term intravenous access lines). Pulling the PICC line was not going to be such a big deal, but rewiring the central line is something that kids are usually sedated for. But because the sedation drugs seemed to be raising her blood pressure, which could pop a varix open again, starting another bleed, they decided to do it without any sedation.
I convinced them to let me stay in the room during the procedure since they weren't going to use any sedation. The nurse and I started hitting the button for her morphine pump, hoping to take care of the pain of pulling the stitches and resuturing. She held wonderfully still as she and I were draped together under the sterile surgical towels, but somehow the wire slipped during the procedure, and she lost the central line altogether.
So today she had to go back to Interventional Radiology and get a brand new PICC line placed, and the old one pulled for culturing. They also tapped another suspicious pocket of fluid, still trying to find the infection that is causing her fevers.
They also pulled her N.G. tube today, much to Annika's delight. That and a good night's sleep last night (finally) have made today a much more pleasant day all around for our girl.
I know I have promised to put an Amazon wish list up for Annika and Frankie, and I will. But also know that, despite everything that's been happening, and despite the fact that we have been getting worried that Annika is becoming depressed and anxious (her uncharacteristic silence, and also she's begun picking at her lips and skin until they bleed, evidently a new nervous habit), we also know that Annika at least has the emotional support of a family that is able to be with her all the time. Which is probably what does her the most good right now. I'm sure that once she starts feeling better, the allure of all-mommy-daddy-all-the-time will start to wear off, and that's when the shiny plastic things will be the real mood boosters.
And, of course, feeling Frankie fall asleep on my chest and watching her jump wholeheartedly into snow drifts is my anti-depression drug of choice right now. She's done wonders for my mood, although we are frolicking in the shadow of the hospital, and I know that I'm missing half of my little snow play team.