One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Thursday, June 16, 2005

best worst

A short history of the question

Recently Bettie Bookish posted a very moving entry on her blog about her experience with cancer, calling it "the best worst thing that has ever happened to [her]." This post, in turn, inspired Peripatetic Polar Bear to respond with her own experience of her "best worst thing", and to throw out the question to her readers: "What is the best worst thing that has ever happened to you?" (But she prefaced it with "If you don't mind" in that wonderfully polite way of hers). She got some great responses in her comments section, and many also said that they would have to write an entire post on that question. There were quite a few stories of losing jobs or losing a ministry or health problems that caused a radical reordering of priorities or opened eyes to a new and better way of living. I had to think for several days before I could come up with a decent answer to the question.

A Brief Comical Interlude

I thought first of jobs lost. But the only job I ever really got fired from was a waitressing gig at a country club in a hoity-toity suburb of Kansas City. I worked there exactly one day, in my uniform of a white shirt and black pants. Unfortunately, in my haste to make the 30 minute drive for my first day, I forgot to apply underarm deodarant. It was summertime, very hot, and not only was I quickly sporting my natural God-given underarm stink, but the white shirt showed the sweat marks appallingly. Evidently the country club folk were not so much into my very French disregard for disguising all bodily odors, and I got the call the next day. "Thanks, but No Thanks." In the spirit of this question, though, this story had a happy ending as I soon found work serving drinks on the Kansas City Riverboat*, which had live bands every night and, hey, it was on the water! I ended up dating the drummer from one of the bands, which ended when I discovered that he subsisted on a diet of 15 potatoes a day (by choice) and was obsessed with the fact that his house was down the street from (serial killer) Bob Berdella's. Good times. Good times. Obviously, that story didn't really strike me as falling into either the "worst thing" or "best thing" categories. *I tried to find a link to illustrate the boat I worked on, but discovered that there are now many, many boats on the Missouri River, and they are all lit up like Christmas every night and fully dedicated to "onboard gaming." My memory of those days was decidedly more Mark Twain-ish.
~~~~~~~~~~~~~~~~~~~~
Some brave parents gave their children's medical conditions as an example of an experience that has forced them into being better people. Am I a better person for being the mom of a child with liver disease? Well, surely I have learned some valuable lessons and met some amazing people. But I think I am still pretty damned angry about the whole situation, and I am also quite sure that the experience has brought my Inner Bitch out a bit more. On the bright side, perhaps my I.B. makes me a more interesting person. But, hell, I was just fine with myself before all this happened. I can certainly think of other avenues of self-improvement that I would have gladly taken instead. So still I sat. Thinking...thinking...and then I remembered this. And I think it fits the bill.

A Longish Trek to My Guiltiest Moment

Being a first-time parent is a scary thing. That feeling of suddenly being completely responsible for the well-being of such an itty-bitty creature - completely overwhelming. I remember having the nurse in the hospital show me how to bathe Annika, and how to change her diaper, and still feeling like I was in real trouble as we drove away from the hospital with a crying newborn strapped into her brand new carseat. So imagine my distress when a mere 6 weeks later I was again in a hospital with Annika, but this time the nurse was teaching me how to inject through the central line that she would have for the next month or so. I mean, I had just gotten the hang of fastening the diaper tabs so that they were neither too loose (leaky) or too tight (uncomfortable), and there I was pushing a syringe into a tube that went into her chest and right into a blood vessel that was right there by her heart. Her heart. Geez Louise. As I pushed the plunger down slowly that first time, I kept expecting my tiny baby to tense and then start screaming. "What are you doing, Mama?" But I guess it was mainly me who needed to do that. Fast forward 9 months. Again I am in the hospital with Annika. By this time she has had a line again for nearly 3 months, although this one goes into her upper arm before snaking its way around to her heart. I am completely comfortable with injecting sodium into it, as well as heparin, any number of antibiotics, and even I.V. nutrition. She also has two bile drains inserted into her belly, which drain off the foul-smelling, unhealthy sludge that passes as bile for her. I know the name of the major bacteria that have been cultured from either her blood or bile (citrobacter, pseudomonas, and, our arch-nemesis, enterococcus - VRE). I know that every 6 weeks or so we have to change her IV antibiotics, as those damned smart bacteria somehow refuse to die (probably hiding in the tubing of the bile drain, where the antibiotics cannot reach) and then become resistant. I know that the Aminoglycosides that have been used for months to treat her infections are known to cause hearing loss. I know that IV cipro is known to cause cartilage malformation in puppies (no word on children). I know that the drugs she has progressed to are the major heavy hitters, the ones that have to be specially approved before dispensing, the ones for which they have no freaking clue about side-effects in children. We have lived in the hospital for the past 5 months. Well, not the hospital, as we have been bounced around quite a bit (if ambulance transport qualifies for a breezy "bounced around"). By this time, I am what our favorite nurse calls a "medical frequent flyer," which means that we have the luxury of consistency in the nurses that are assigned to us, and we have managed to score some extra pillows. I have also become quite complacent with our routine, which is incredibly circumscribed given that Annika has been put into isolation, thanks to the nasty bugs crawling throughout her system. Perhaps I am in shock; perhaps it's just the normal human resiliency that allows one to adjust to whatever ludicrous living situation arises, but I am no longer intimidated by the medical world. I know how to operate the IV pumps. I know how to adjust the leads plastered all over her body so that they don't alarm for no good reason at 2 a.m. I know how to tell a false reading from a true one on the monitor tracking her heartrate and respiration. I know, I know, I know. Mainly we just try to get through the day keeping Annika comfortable, but our one event, every single day, is Annika's "bath." OK, it's not really a bath, since she has way too much stuff attached to her body to actually immerse in water, but there are towels and water and soap involved. Because of her liver's slow breakdown, not to mention the rampant infections, Annika's smell is musty and reminds me of a kitty litter box. I look forward to the hour or two after her bath and lotion, when she smells like a baby is supposed to smell again. That bath time has become sacred time for me. So one night I had just started Annika's bath, a little late, when the night nurse comes in, a little early, to ramp up the settings on Annika's IV nutrition, which she receives through the night. Somehow, that night, it was impossible for the nurse to reach the IV pole, which was right by me, without interrupting the bath to move Annika. So I said, "I can get it." And I reached over and changed the setting on the pump, and pushed the green Start button. No nerves, no screaming, no fear whatsoever. It was just like changing the channel on the TV. The nurse, peering over the bed, said, "OK! Thanks!" And she was gone. Annika had been put on IV nutrition (called TPN) a few months back when her main GI in Chicago had casually observed, "She's so malnourished she's digesting her own muscle." (What? I looked at those breasts of mine which were letting down my baby so badly. Actually, though, it turns out that I was producing waaaaaaaaay more milk than usual - you should have seen the PICU freezer when I had to pump - but Annika was simply unable to digest without a functioning liver). The TPN was miraculous for her. We could see the improvement within a few weeks. But TPN is also known to cause liver failure. In this case, the reasoning was simply that it was obvious that Annika was going to need a transplant soon, so it would be better if she could go into transplant, a huge surgery, with the reserves that being better nourished would provide her. Bigger babies, overall, just tend to withstand the surgery better. The TPN has to be treated carefully, though. The lipids and the glucose mixture were delivered in separate bags, and only mixed once they hit the IV tubing, which reduces the chance for dangerous crystal formation. And the lipids, which are a big culprit in the possible liver damage, have to be delivered at a slow rate, while the glucose is ramped up after an hour to make sure that her system would not be overwhelmed. But all that was already old hat for me. We had been doing it so long - even hanging and setting up the preparation during our stay on the cooperative care unit in Nebraska. So ramping up the TPN on the pump was really no big deal. Sometime shortly before midnight, the IV pump began dinging. I was still holding Annika in my arms, and I looked up at the message, glowing red, on the pump. It didn't make any sense. It said that the bag was empty, but the pump was set to run its usual 12-hour course. How could the bag be empty? I called the nurse, in that confused midnight state of mind. Did the pharmacy make a mistake? Did they not fill the glucose bag correctly? What was going on? The lights went on...and that's when we saw that the bags had been set up wrong. The lipids bag went onto the glucose pump and vice-versa. Perhaps you are not hearing a menacing DUM-DUM-DUM in your head right now, but you should be. We had just pumped the lipids into her 4 times faster than we were supposed to. Yes, the lipids that cause liver damage, and have to be injected slowly to minimize damage. Yes, in a girl whose liver was already seriously compromised. My eyes were wide open the rest of the night as I listened to my heart pound in my chest. What the hell had I done? I was the one who had increased the flow of lipids into her body, when I offered to increase the rate for our night nurse. Was she going to wake up? Was she going to be alright? I went over and over the whole thing in my head, trying to figure out how this had happened. The previous evening one of our regular nurses had been training two student nurses. The mood in the room when they came in to set up Anni's TPN was really a bit jovial, what with the fresh faces of the young nursing students. They just gave off a vibe of optimism and health and cheer, having never yet lost a patient or watched a child scream in fear. Our nurse watched them string the tubes through the pumps, as we all chatted about something or other. The pumps were clearly labelled, "LIPIDS" and "GLUCOSE." Our nurse watched as they set the pumps going. Of course, it turned out that the students had strung the lines through the wrong pumps. Which means that it wasn't my fault. But, really, it was. Because I knew that the regular nurses always, always checked to make sure the pumps were set up correctly before they ramped up the TPN, an hour after the pumps started. That was the time for the fail-safe, and I had run right over it with my complacent, I-know-my-way-around-an-IV attitude. I had hit that Start button without checking the tubing. And I knew, I knew that our night nurse would have checked it. Still, Anni would have been hit with that hour of lipids suddenly running in too fast, but I had compounded the mistake by doubling the rate at the appointed time. The next day I wanted to tell Joerg, the one person who would have really understood how I was feeling, about it. But I couldn't, for a number of reasons. First, I felt so guilty. How could I tell him what I had done to that little girl he loved so fiercely? How could I tell him that I had harmed her when she was already so fragile? Second, I worried about what that knowledge would do to him. I had already noticed the stress affecting him physically. I watched as his hands tremored when he got upset. I knew he wasn't sleeping, and that he had started smoking again. I admit that I envied him those cigarettes. But I wondered what even one extra bit of bad news would do to him. And, finally, I also knew that Joerg had lately been pushing for Annika to be moved to Nebraska. He was unhappy with how long it was taking for Chicago to act on the living donor option; patience has never been his strong suit, and who could blame him for wanting action soon to help his child? We had waited and waited there in the hospital. While we waited, we watched other children come and go. Some of them received their transplants and went home, looking great and healthy. Some of them died waiting like Anni was waiting. Some of them were transplanted, but were too sick and weak to survive the surgery. Watching these children come and go was hard. With every child who died, my nights got a bit shorter. And, although it was heartening to see children who got better and went home, it was a bittersweet kind of happiness. Why wasn't that Anni? So Joerg was pushing to go to Nebraska, where they promised us that they would have a living donor transplant arranged within a few days. But I had been with Anni in Nebraska, and I knew that, despite being great doctors, they just didn't know Annika as well, and therefore would never be able to provide care at the same level. I knew it was not just a matter of getting her transplanted, but also getting her through the transplant alive. I was afraid of going to Nebraska, where they might not believe that she really did need the sort of super-duper, underground bunker kind of antibiotics she was getting in Chicago. I was afraid that, if Joerg were to find out about this screw-up, he would have Annika on the next ambulance out of there. So I suffered my guilt alone, turning it over in my head until the incident became an entire book-length story entitled, "How My Overinflated Confidence in My Own Abilities Led to the Death of My Sweet Firstborn Child." Thus, I was no longer complacent, but instead a snappish, high-strung bitch, while I watched Annika for signs of the damage done. Sure enough, within a week or so, Anni's labs began to worsen dramatically. She became neon with jaundice, barely awoke (except to scream in complete confusion), her ammonia levels skyrocketed so high that we began worrying about brain damage. Worst of all, though, was her breathing, which had become laborious and painful to watch. In the organ allocation system that is now in place, Annika's worsening condition would have moved her up the list. But Anni was waiting back in the days when the waiting was everything. Time spent on the list was the main determining factor in who was given organs, unless a patient became a Status 1, which means that the doctors estimate the patient has about a week to live without a transplant. Those patients jump to the front of the list, but we also had seen that most of the patients who didn't survive transplant were Status 1 patients. It wasn't a good place to be, front of the line or not. And, in my head, this was All My Fault. Maybe it's hard to imagine how this little incident could have triggered a guilt complex this raging, but I'm guessing that it has to do with the guilt that all parents of Biliary Atresia kids feel. The cause of this disease is unknown. It's clearly not a strictly genetic condition, but there is some talk about a "genetic predisposition." No virus has been identified as the causal factor, but some researchers believe that viruses may be involved. I've even read about theories that blame some sort of environmental pollutant. With all those unknowns, every BA mom I have ever talked to has confessed that there was some incident during the pregnancy that she wonders may have caused the disease. For me, it was the fact that I continued to teach community education classes so late into my pregnancy, exposing me to all sorts of viral bugs, and back in the days before I washed my hands obsessively. So even though the doctors tell you that "there was nothing you could have done to prevent this," still you feel like they are just saying that (because, really, if they don't know what causes BA, then how could they tell us whether or not we could have avoided it??) and you feel the guilt nonetheless. A few weeks after The Incident, the doctors determined that Annika needed to be moved to the PICU for complete liver failure and the suspicion that she was on the verge of ventilator-dependency. She was a Status 1, and all I could see in my head was me hitting that fucking green Start button over and over in my head, harming Anni's liver and making her sicker with that one little push. The living donor transplant was scheduled with my cousin as the donor, but then The Big Call came that a liver had been donated for her. Annika was wheeled into surgery, and 9 hours later she was back out again with a functioning liver for the first time in her life. The surgeon, in his post-op debriefing, announced that Annika's problems with her portal vein were so serious that the living donor surgery would never have worked for her, as a living person could never donate the length of blood vessel she had required. It's very likely that she would not have survived if the living donor transplant had been attempted. I've documented all this before. But what I have never discussed is how guilty I felt for her rapid deterioration, and eventual move to Status 1. On the other hand, if she had not gotten so sick, then she would not have been moved to Status 1 in the PICU. And if she had not moved to Status 1, she would never have gotten a donated liver so quickly. We would have gone ahead with the living donor surgery, and most likely would have lost her. I have never asked the doctors how much the TPN mistake contributed to her rapid deterioration near the end. We all know it couldn't have helped her, but it's a subject that neither I nor the medical professionals, paying out the wazoo for malpractice insurance, have really felt like discussing. In the end I'm happy to think of it as a terrible mistake that may have saved her life. If so, it was certainly worth a few weeks of lonely, intense guilt. My best worst thing.

18 Comments:

Anonymous Andrea said...

WOW.

*sobbing away at my desk*

Great story.

6/17/2005 6:30 AM  
Blogger Sarahlynn said...

Wow indeed.

6/17/2005 9:46 AM  
Blogger liz said...

Ditto.

6/17/2005 10:15 AM  
Blogger Laurie said...

I'll second the emotion. And I'll also agree to the guilty feeling of being a "BA mom". It's always there, in the back of my mind..."What did I do?"

6/17/2005 11:19 AM  
Anonymous Becca said...

Moreena,
From one BA mom to another...heck from one PTLD mom to another...here are some (((BIG HUGS))). You made me cry a big cry - thanks - I needed that especially after the month that we're currently having.

I've got some of these guilty thoughts in my own head about Natalie's situation, but I don't know if I could have the courage to face them.

6/17/2005 1:09 PM  
Blogger corndog said...

Your bravery and honesty is breathtaking.

6/17/2005 1:20 PM  
Blogger Phantom Scribbler said...

Trembling.

Thank you for telling your story.

6/17/2005 7:56 PM  
Blogger Yankee T said...

Wow, wow, wow. And beautifully told. Thank you.

6/18/2005 10:38 PM  
Anonymous Anonymous said...

Moreena, wow, what a story. There are some things that to this day I still blame on myself. I think it is just hman nature.

6/19/2005 9:14 AM  
Blogger Sarah said...

Sorry, that was me up there, anonymous

6/19/2005 9:19 AM  
Blogger Colleen said...

That post was one of the most moving I have ever read. I have spent many sleepless nights wondering what I did to do this to my child as well. That answer will never be known. I was also told the same things that it wasnt' anything I did wrong, but the what if is always in the back of my mind.

6/20/2005 7:36 AM  
Blogger Jay said...

That is heavy.
It's great that you can look back with some clarity and know that it was the best worst thing, whereas I'm sure at the time it was just plainy the worst.

6/20/2005 8:15 PM  
Blogger Bettie Bookish said...

Moreena~

I've been trying for days to formulate the right comment to this amazing, honest, brutal and lovely story.

All I can say is that you are a gift. Thank you.

6/21/2005 8:06 AM  
Blogger Rory Kearn said...

I've been reading you for a while now and I don't have anything more appropriate than WOW to say to this post. What a story! And what a best worst thing. Thanks for sharing this, it's why I love blogging and reading others. It's bravery. My thoughts are with you all.

Rory

6/21/2005 12:01 PM  
Anonymous Emma said...

Moreena, I loved (thats the wrong word) how open you were in this post and also how much this question has got me thinking and battling with it trying to come up with my "best worst"... I think it takes a very strong person to see good in bad situations and I salute you.

6/27/2005 3:48 PM  
Blogger Scrivener said...

What a terrible, wonderful, moving post! This post exemplifies what is most promising and empowering about these blog-thingies. Thank you so much.

7/07/2005 11:00 AM  
Blogger Running2Ks said...

Powerful. You are an incredible soul. You have made me cry. Thank you for sharing this. You are very courageous. Your precious daughter is really lucky to have you.

7/08/2005 9:09 AM  
Blogger Rowan said...

You have my support, my empathy and my admiration. Being one of those overly confident hospital moms, myself, I couldn't help but cry and cry while reading this.

My daughter was also 6 weeks when diagnosed (with Kidney failure), nine months when intubated and "out" for 6 weeks, hit End Stage Renal Failure before one year. We have g-tubes, dialysis catheters, and months of hospital/PICU time under our belts. We wait and wait for a donor to come to us.

It all just hit so close to home. I think you're right, though. I may not be as easy go lucky and spontaneous as I once was. But, I feel that I am definitely a better person. Thank you for once more for reminding me that I am not alone.

7/09/2005 12:19 AM  

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