Christmas morning was not good. Jörg had heard that there was a Starbucks ("Star Box," as Annika calls it) open on Clark street. So I set out that morning on my caffeine treasure hunt, but not before Jörg had called to tell me that Annika had had another bleed, with large quantities of blood coming out of her NG tube. I knew this was really bad news, coming as it did nearly 4 weeks after the shunt surgery was supposed to correct this issue and while she was concurrently trying to recover from sepsis, bowel perforation, and an open abdominal wound. After all the other drama of the past few weeks, it's almost hard to remember that her bleeding was the original issue.
As I was walking along Clark street, I was engaging in a little self-calming using the same technique I use on Annika, repeating over and over a comforting phrase. That morning my phrase was, "She is going to be alright." I couldn't squeeze my eyes shut the way I needed to in order to really concentrate and get it right, since I was, after all, searching for an open Starbucks, but I felt like I was doing a pretty good job of it. Then a man holding a plastic bag began his panhandle patter, and, distracted from my repetitions, I just started bawling. In the empty Christmas morning street, the sound echoed off the shuttered store fronts until it seemed more like the sound was all around me, rather than actually originating from me. The confused man, startled beyond what his poor inebriated heart could likely stand, began muttering apologies and saying, "It's going to be alright, baby." Reminded of my own mantra, I calmed a bit and thanked him.
I finally happened upon the Starbucks, but it was closed, like everything else.
The snow that morning plopped against my face in wet, heavy blobs, washing my face in an assault of weather. By the time I got to the hospital there was no sign of that morning's breakdown on my face.
But now medical life continues apace. After the panic of Christmas eve/morning, one of her stronger antibiotics was restarted, as well as the medicine to stop the bleeding, and she improved immediately. Still, her ventilator settings were being steadily increased to support her lungs, leading some of her doctors to suggest pneumonia as the possible culprit for her sudden downturn. Of course, I hopped straight on to the internet and googled "ventilator-associated pneumonia." You'd think I'd know better than to do that by this point, but of course I had to read that VAP has an approximate mortality rate of 30%, and tends to be more serious in late-onset cases, which Annika's would be, coming 9 days after (re-)intubation.
Luckily, our current PICU resident has no problem with googled-up parents coming at him with 1,000 questions about their experience with handling VAP (very good, nowhere near 30% mortality) and the likelihood that she actually has pneumonia (he is the doctor least convinced that pneumonia is her problem). I was much reassured, and even happier to see that the nurses were able to begin turning down some of her ventilator settings.
My mom and Frankie are still here in Chicago with us, and Frankie finally got to visit her sister yesterday. In fact, when offered the choice of going to the hospital McDonald's first or visiting her sister, she chose Anni with no hesitation. We got suggestions from a child life specialist for how to prepare Frankie to see her sister on a ventilator and generally looking very sick, and she thought showing her pictures of Annika before bringing her back might be a good idea. So I met her at the front desk and we talked about the Polaroids I brought of Anni, explaining the breathing tube and the huge number of IV's going into both arms. We told her that she was sleeping, and that she needed a lot of rest to get better, and that she wasn't hurting. But the thing that Frankie really wanted to hear was that Annika wasn't sad. She repeated that question over and over, needing reassurance on that point in particular. I hate to think what that says of Frankie's current emotional barometer.
Frankie seemed to take the actual visit in stride. She wanted to stroke Anni's hair, so I had to kind of bend her over the breathing tube so she could reach her sister's head without dislodging anything. She asked about the purpose of nearly every tube she could see, and was particularly impressed with Annika's foley catheter, used to catch urine. I can only guess what a 2-year-old makes of peeing into a tube. Just in case, I'll be watching to make sure she's not carrying any drinking straws into the bathroom with her. Her aim is really not that great.
Frankie, though, has been enjoying her visit to Chicago much more this time. Matthew's little sister, Lauren, was great fun for Frankie.
Frankie at first was calling her "Shelby," her other great blonde friend, but by the second day she took to calling her, "my friend Lauren." Their favorite activity, by far, was dancing together, and by "dancing," I mean, of course, twirling in circles for inhuman amounts of time, in the way that 2-year-olds, with their special inner ears evidently designed for spinning, love to do. Lauren is exactly the kind of gentle and easygoing playmate that Frankie needs to distract her from all the upheaval in her family right now, and I suppose the same could be said for Lauren.
We were sorry to see her go yesterday.
The Kohl's House does have a little Christmas tree up, and there were donated presents under the tree for both Frankie and Annika, so Frankie did not miss out altogether.
Meanwhile, I've been spending as much time as possible with Frankie while Annika is kept completely sedated. So Jörg has been spending the bulk of his time in the hospital, including nights. As anyone who knows Jörg knows already, my husband throws himself into projects with a wholeheartedness almost exhausting to witness. So I come to relieve him in the morning and often find him bantering with the nurses, "So how are those 'lytes looking? What about the coag's?" (electrolytes and coagulation labs), "Can you believe that vanc level?" (vancomycin). He no longer refers to Annika as "puffy." Oh no. Now she's "edemous." I tease him that he's on the way to becoming one with the PICU. I tease, but I'm glad he took enough time away yesterday to shave and hang with Frankie a bit. I tease, but I dare you to find any parent more invested in making sure no one ignores any single detail in his daughter's care.
Today the plan is to try to reduce her ventilator settings and her sedation, and add in the teensiest bit of formula through her NG tube to try to wake up her GI system. She can start moving a bit more because she has a fancy new dressing for her open abdomen. It's called a "wound vac," and it's essentially a huge sponge that is stuffed into the opening of the wound with a tube attached that continuously suctions out the goop (the goop best left uncontemplated). Because she doesn't have to have huge wads of gauze stuffed under the dressing with this system, her abdomen is much more secure and they have even been able to move her up on to her side every 4 hours.
I look forward to those moments when she awakes just enough to feel my hand stroking her hair. I ask her questions ("Are you comfortable? Would you like us to move you?"), and then stare intently at her for several seconds. When the nod or shake of the head comes, slow and easily missed if you're not paying close attention, I enjoy the reminder that my Annika is still there inside that sleeping body.
Hearing her voice again is going to be heavenly.