jaysaint Getting it all down on paper…

I’m on a business trip. That means Damon’s on his own with the boys for a few days. He just texted me to let me know that Alden’s bedtime demands were epic. When I asked him to tell me more, this was his transcription of what Alden wanted:

— to spin around while music played

— two separate glasses of water

— Elliot to leave

— Damon to leave

— Breakfast bar

— Pirate story

— unlimited access to iPad

— Elliot to leave

— a burger

— unlimited amount of time to climb the blanket box

— Damon to leave

It is no small wonder that Damon’s hauling them to his Mom’s house as soon as school gets out tomorrow.

The big event of the day was an upper GI study, which differs in value from the endoscopy Alden’s already had because they can watch him swallow something other than a camera.

As far as hospital tests go, we rate this one a “must try.”

Alden, the child who acts like I’m poisoning him with my disgusting bananas and peanut butter and cheese sticks, protested when the nurse pried the nearly empty cup of barium contrast fluid out of his paws.

Lead Gonad Shield

Today was all toys and lights and cool pictures of innards. Which are all normal.

Monday at oh-my-god in the morning we report for the MRI of his brain. The nurse asked me if he could lay perfectly still for 45 minutes. I told her that he cannot lay perfectly still for four to five minutes. General anesthesia it is. If anyone has a four-year-old who can hold any position for nearly an hour, please tell me so I can block you and your perfecty perfect kid.

In the spirit of “Eat, Drink and Be Merry; for Monday We Get the Needle” we’re going to spend a long stretch at the Children’s Museum this weekend.

Late last night Alden whispered in my ear, “Please don’t take me to the doctor.” I did what I’d been promising myself I would not, which was to make him a guarantee. I told him that they would not put another tube down his nose. I didn’t make any promises about needles or hospitals or anything else, but if one thing has come to represent the most miserable parts of his passage through the Knoxville medical system it was that NG tube. The inserting it. The having it. All of it. I can’t see why we would need to do that again, and if I’m wrong they may need to tranquilize us both.

He’s symptom-free right now, although we have decided not to give him the Zofran tonight so that may change. We’re not trying to instigate anything, but it seems wise to make sure there are no medicines onboard when they see him for the first time.

I don’t know what to expect. Will they give him an exam and then shrug and tell us to come back if he starts vomiting again? Will they admit him to the hospital and wait to see what happens? Will they schedule a series of tests that will keep us in Cincinnati for next week or even longer? I’ve lived with the uncertainty for two weeks, so I’m trying to parcel this off in my brain and wait patiently for 16 more hours or so. I’ve packed up my computer and work notebook, counting my lucky blessings I have the kind of work and the kind of boss that makes it possible for me to set up a remote office.

The 2am Zofran works. I’d really like to wave a “Nothing to see here” hand over Alden and just commit to doing this forever. Except for how that’s crazy.

The doctor we’re seeing tomorrow got his MD and his PhD in the same year (I Googled him, naturally). Surely he can figure this out.

Alden has no intention of eating hospital food. The empty spot on his plate was the toast.

We’ve all had that rush of adrenaline when a car on the highway get misaligned and a collision looks inevitable, at least for a moment. It doesn’t happen, though, and we drive away shaken with the knowledge of what could have so easily been. No reason it shouldn’t be me this time.

Last night a doctor said that Alden was showing red flags for some very serious diseases. The word “leukemia” came out. That’s where I’ve been for the last three weeks. A busy, pleasant Christmas led right into a gastrointestinal storm that has had our 33-pound Alden laid low for weeks. He gets better; he gets worse. We spent the night in the hospital. He improved with a solid 24 hours of IV fluids. We went home and about our lives, until a few days later when he was as sick as he’s yet been. I’m writing this from the little sleeper couch in his hospital room.

I feel like I’m behind the wheel of that car. Multiple invasive tests today allayed the doctor’s concerns around cancer, around Crohn’s Disease and other chronic intestinal horrors. But between this night and last night all we had was an endless stretch of that oncoming car. I rattled back and forth between a disassociative blankness where I stared at the murmuring television on the wall and breathless panic where I crouched over Alden and imagined his silky hair falling out, imagined losing him. I wondered grotesque things like whether we would let Elliot wear Alden’s clothes. I ground my teeth in frustration with myself for going to such horrible places in my head. Sufficient unto the day was the evil thereof.

We’re still dizzy with the adrenaline release of hearing that the MRI, endoscopy and colonoscopy all showed a healthy digestive system. The doctor is betting on a crazybad infection that he hasn’t been able to clear. Some things still fail to add up.

His white blood cell count was 30,000 (very high) when we brought him to the ER on Monday morning. No fever. 24 hours in IV cipro and flagyl knocked it all the way down to 11,000 (almost normal). Apparently this count and absence of fever is a possible leukemia indicator. Our nurse tonight expressed her skepticism that the antibiotics could have such a dramatic effect so fast, but had no other theories to offer.

Whether viral or bacterial, he’s been extravagently sick for almost three weeks. No one else in the house has been affected despite lots of exposure.

All the cultures, and there have been many, have come back negative.

Paging Dr. House, please. Except, you know, for how all his patients’ skin falls off or their eyes fall out or they spontaneously combust. Please let us always be too boring for a genius diagnostician.

Alden has been so, so brave. He has tried to cooperate even though he does not remotely understand what’s happening. He went without food or water for 36 hours as part of his testing prep. He cried and begged everyone he saw to please get him something to eat. He screamed for me to protect him and make them stop when they put the nasogastric tube in. This morning he was so defeated he went mute, refusing to respond to anyone for hours, tears standing in his eyes.

Alden will spring back, I know. Now that the hardest parts of this visit are behind us his personality is peeking out again already. I’m expecting them to send us home tomorrow and he’s going to perk right on up once we’re out of here. We’re going to put this right on behind us, as we should, but this is me making a mark in this time that Alden truly suffered and we were so frightened of what can so easily be taken away. A quick walk down these hallways reminds me that there’s no reason it couldn’t be us.