Annika got to help me pack her own suitcase for her trip to the hospital. She reacted to this news like she had just summited a great big mountain called "Maturity." In other words, every book, every snuggly, every CD was weighed carefully before it went into the red rollcase. As we were approaching the end of the task, I asked her, "OK. Is there anything else you want to take along?" She leaned against the wall, crossed her arm over tummy, rested her other elbow in the palm of her hand, and tapped her finger on her chin as she murmured, "Hmmmm. Think, think, think...Oh, I know! I should bring along Hairy Joe!"
"Hairy Joe? I have no idea what you are talking about. What in the world is 'Hairy Joe'?"
I admit I was torn between thinking that asking for "Hairy Joe" at age 4 1/2 was either awfully cute or more than a tad creepy.
"Mama. Hairy Joe
! You know!"
"I'm afraid I really don't, sweetie. Can you tell me more about Hairy Joe?"
"It's just Hairy Joe
! Uptown Girl!"
"Ooooohhhhhh. Billy Joel
She gave me her best "whatever" look, and went on with her packing. Yes, my daughter is obsessed with perhaps the worst Billy Joel song, ever. But you haven't lived until you've heard a blonde moppet strapped into a Ford Taurus tsk tsk offkey at the top of her lungs that "She's been living in her white-bread world."
Annika brought along her favorite hospital doll, Betsy. Betsy has endured a lot over the years in the interest of entertaining Annika during boring old hospital stays. Here she is, 18 months ago during a longish hospital haul (most of February to April).
How Annika spends her time in the hospital (movie)
Jörg reports to me that Annika took her unpacking just as seriously as she took her packing. Her audience for this ceremony was her nurse, Donna. Reportedly, Annika amused Donna no end as she remembered things she had forgotten to pack and exclaimed, "Oh my goodness!" with her arms outstretched in the "Why me?" gesture.
Donna is one of my favorite nurses, and not just because she evidently stayed in the room for quite some time giving ample appreciation for Annika's performance art. She is one of the older nurses on the floor, and she's been on the GI and liver transplant floor since its creation a decade or so ago. This is somewhat unusual, as the floor does have a fairly high turnover rate. The nursing team there assigns transplant patients a "primary nurse," who cares for that child every day she works. This is great practice for improving care for all patients, but especially for kids, who really appreciate the stability that seeing a familiar nurse's face every day lends. I can well imagine, though, that it leads to an awful lot of nursing burnout, as the nurses certainly develop strong attachments to their young charges, some of whom inevitably do not survive.
But every time we end up in the hospital, there is Donna, walking the halls in the culottes she favors, looking every bit like your favorite teacher from grade school or the librarian that always shushed you when you walked by giggling, but you loved her anyway because she told the best tales during storytime.
My most vivid memory of Donna is from the time between Annika's first and second transplants. We were all in shock that Anni was back in the hospital because her first transplant had seemed such a smashing success. It was truly a bucket of cold water to the face, and we didn't even know how to react. It didn't really help when the doctors told us that a clot in the Hepatic Artery, which was what was necessitating the second transplant, was something that usually occurred immediately after transplant, and only rarely showed up several months later, after the transplant appeared successful. Going through the numbers it seemed that if there was a slim chance something could go wrong for her, it did. Being born with Biliary Atresia: 1 in 15-20,000. Having a blood-type incompatible with both parents (so neither of us could be living donors for her): 1 in 4. Developing 4 major blood clots (hepatic artery, femoral artery, portal vein - which clotted again after the second transplant): I don't know, but it freaking sucked. Developing an allergy to the major class of drugs used to treat the type of bacteria infecting her abdomen: ditto.
As you may gather, I was feeling simultaneously numb and whiny. So when some little procedure that Annika had had scheduled for the night before got bumped to the morning, I was not happy. I was at the nurses' desk when I found out that she had again been bumped, all the way to the afternoon (meaning she hadn't eaten for well over 26 hours). I knew that IR wouldn't bump her unless they had an emergency, so I really couldn't complain. But, still, it seemed unfair. All of it. Sighing, and trying very hard not to throw a fit, which, don't get me wrong, I had already done too many times in their presence, I said in my best martyred voice, "Oh, man
! That little girl of mine really has the worst luck
I paused for just a few seconds, listening to those words, and looking around me, at all those doors to rooms of children I had come to know through the rumor mill of long-term hospital parents. Then I shook my head and said, "Oh, no. She really doesn't, does she?"
Donna was there at the desk, charting her patients. I didn't even think she had heard any of what I said, but then she looked over at me and lowered her chin so she could look over her reading glasses and into my eyes. "No. She really
doesn't." And she gave me a look that was both "Shame on you for saying such a thing," and "I'm proud you figured out the truth on your own."
Of course, Donna at that time was primary for the most pitiful case on the floor. He was only 8 months old, and waiting for a liver and small bowel transplant. His mother had essentially abandoned him when she found out how sick he was, which sounds horrible. But then I found out that she had lost a baby only a year before he was born, and I think the grief that comes from watching 2 babies die would be nearly unbearable. And chances were against his survival: babies who need both a liver and a small bowel wait much longer for transplant, and have a much harder time avoiding serious complications while waiting. Like many sick babies, he was only happy being held, but there just weren't enough volunteers to hold him 24 hours a day. The sound of him crying in his room, alone. God. And then the knowledge that these might well be his last experiences of this life.
Meanwhile, Annika was ensconced in constant human contact. My cousin had already agreed to donate a piece of his liver. We bought toys in pairs, one for Annika and one for him. But it wasn't really what he needed, we knew.
And now, 3 1/2 years later, Annika is living a glorious and bountiful life. The major complications 18 months ago that had her doctors frowning when they talked to us have not led to the kind of deterioration that they expected. It's amazing and unlikely, and we like living in the slim odds this time.
Back in May, I wrote an entry about finding a website that documented a couple's decision not to pursue transplant with their daughter
, who had the same liver disease as Annika. Instead, they watched her die, giving her pain medicine to make her comfortable, when a liver transplant would have given her a better than 90% chance of survival. As I struggled to understand how any parent could come to this decision, it did occur to me that children all over the world die of this disease. Most of the world's population does not live in a country that performs liver transplants, the most costly and complicated type of transplant surgery, on a regular basis. And, even in this country, we are among the lucky insured, who don't have to struggle and depend on the charity of medical boards to get treatment for our child.
And now it is happening again
, in the United Kingdom this time. And I am even more stunned this time, given that country's generous health care and social support system. In this case, the courts may well step in and force the mother to treat her son, to allow him to be transplanted. I am trying to see the mother's side; it seems wrong to me that a court should dictate this decision. But I can't help but hope that they do, and soon, and let him be one of the lucky ones, too.
* (edited to add a few notes about the movie)
A) The baby you hear in the background is 4-month-old Frankie, not one of the lone hospital babies I've been mentioning lately. Anni was in strict isolation (which also means no leaving the room at all) when I shot this.
B) I do know that hospital sinks are generally not good places for kids to play, especially immunocompromised ones, BUT
C) This particular room had 3 sinks: by the bed, in the bathroom, and by the door. The one at the entrance was where everyone washed up as they entered and left the room, so this sink was relatively unused, AND
D) The sink had just been cleaned, MOREOVER
E) I don't usually allow her to play in the sink, but she was truly going stir-crazy. She was nearly over the latest infection, and sick of her cute, little blue-and-yellow room. STILL
F) Oh, baby girl, don't put your mouth on the sink!