I’m too stunned. Events are happening too fast for me to react. It’s July 15, 2008. I have no idea what time it is. I’ve brought my wife into the hospital because labor has started; the day is finally here – our daughter is being born. I’m sitting here, waiting for a nurse to come get me. They already took my love back there, wherever “there” is, to operate. To start the c-section, in an attempt to save our daughter’s life. She’s too early; she’s breach; she’ll die soon if they don’t do something, and fast. I’m dressed in street clothes, with a paper gown over them. I’m warm, too warm. My mind keeps going to dark places – what if what if what if – and I try to distract myself. I focus on the paper booties they gave me to wear over my shoes, my hot, panicked breath blown back in my face by the mask over my face. The baptismal cup in my hands. Will I be able to baptize her? Will she die before I get the chance? I’m scared. I’m scared for my wife. I’m scared for our unborn daughter. I remember too well the promises made: never be able to walk. Maybe not able to breathe. Need heart surgery immediately. Death almost guaranteed. Don’t get your hopes up. Dead within a month. Dead within a week. Options for denying support. Screw that, I think. As long as she can be kept alive, she’ll be given every chance I can give. The nurse bursts in, interrupting my thoughts. She doesn’t need to speak; I know she’s here to take me back.
In all the excitement of Namine’s fever and trips to the doctor and hospital, I forgot to tell you about this: Namine went on the potty a couple days ago. It was pretty momentous, even if, so far, it’s only a single occurrence. But the fact that it happened at all – and how it happened – may, just may, indicate something much larger. Possibly something yet again doctor-defying, even.
Last night Namine had an incredible fever of 103.2. That was under the armpit, too, and we thought that was much too high for what the doctor had called just that afternoon “the tail end of a virus.” To us, it seemed like she was coming down with something else entirely. So we bundled up Namine and headed to the ER – me, Jessica, Namine, and my Aunt CR, who was visiting for the evening. I doubt it was as relaxing as she’d hoped the evening would be.
So Jessica took Namine to the pediatrician this afternoon. According to the doctor, Namine’s fever is the result of a virus. Again. I tell ya, the kid can’t get a break. As a result of the high fever, she doesn’t have much of an appetite. She’s crabby. She’s tired. It’s up to us to make sure she’s well-hydrated. Normally that wouldn’t be a problem; Namine loves water. Loves it. But when she’s feeling so ill, of course she wants nothing to do with anything. Except perhaps Elmo.
Last night Namine had a fever of 101.1. But that was taken under her armpit – she doesn’t quite yet get the whole idea of holding the thermometer under her tongue – and I’ve always been told that you should add a degree to an armpit temp. So make that 102.1. I gave her some Motrin right before bed (I usually do for her feet, anyway), and she fell asleep almost immediately.
Namine had a clinic appointment yesterday with special needs at CHW. It was really just an overview of how she’s doing, and what’s coming up. The long and short of it is, she’s remarkably healthy – even despite her recent sickness and having the croup at the moment – and she’s got at least several things coming up: hernia repair, g-tube removal, IEP, and more developmental evaluation.
A friend of mine (hey Steph) posted something quite thought-provoking the other day. I think it might even have been last night. But one phrase caught me and wouldn’t let go: “I should have died.” You see, some time ago, her heart failed, and she would have died, if not for the heroic actions of Children’s Hospital doctors. It has been a long and hard road – and we can relate.
That’s Namine napping on the couch, on top of her piggy pillow. She fell asleep watching “Scooby Doo Meets Batman” for God only knows how many times. (I can tolerate that – and the other Scooby Doo videos she has – a little better than Dora or Elmo.) She was feeling much better last night, and Jessica tells me that she’s doing better today. That’s good for her and us – she’s crabby when she’s sick. The first indication that she was doing better was that she ate something like ten pizza rolls. With mustard. But more on that in a bit.
Yesterday morning started out less than stellar: Namine woke up coughing – and not just any cough. It sounded like the croup was back, and she threw up shortly after she took her morning medicine. Her cough improved but didn’t go away after I gave Namine her breathing treatment, so I called the pediatrician. We were lucky enough to get in that morning, but the verdict was exactly what we didn’t want to hear. Namine has croup again.
Well, kids, last night saw us in the ER again. Thankfully, it was a much shorter time than on Tuesday. Dr. Gordon, the head special needs doctor, wanted to see Namine because she’d been lethargic pretty much all day. It’s a pretty good indication that Namine isn’t feeling well when she doesn’t even want to play on the floor, much less scooting around.