Here we are

I had a home visit set up for this afternoon with Peter's hospice nurse and social worker ... sort of a "meet and greet". But this morning Peter woke up in distress, with a racing heartbeat and struggling to catch his breath. We could tell he was scared, because he just wanted to hang on us.

Thus began multiple rounds of phone calls to pediatrician, hematologist and hospice nurse. Appointments for various tests were made for Monday. All this went on while I sat in Legal Research and Writing class, attempting to learn how to search for legal cases on Lexis.

By the time I got on the train to go home, Carl was beginning to agree with me that we couldn't let Peter suffer like this through the weekend. Our only choice was to head for the ER. Peter was ready to go to the hospital the moment I came in the door. I couldn't move fast enough for him.

Within 5 minutes of our arrival, the nurses had smelled ketosis and concluded that Peter was in diabetic shock. His initial sugar level was 740. He should have been unconscious. We knew he was at risk for diabetes and his sugar had been a little high for a year or so, but he had not been drinking and peeing like crazy as most people do when their sugar is out of control.

Soon we were transferred by ambulance to the PICU at the hospital where Peter had his bone marrow biopsy. He now has sensors all over the place, an IV infusing saline and insulin, and lots of doctors and nurses puzzling over him.

The weight loss we've been seeing is probably due to the diabetes. Apparently the panting and rapid heartbeat came from his body trying furiously to shed the sugar. We would have eventually reached this crisis point no matter what, but the Prednisone Peter started 3 days ago is probably what made the sugar go wild.

His pediatrician had prescribed the Prednisone because he just didn't know what else to do with a kid who seemed to be having respiratory problems for no reason. I told Carl that I really didn't want to give Peter Prednisone without knowing WHY we were giving it ... but I guess we all hoped that it would make him feel better no matter what the cause was.

We've had blood drawn quite a lot of times during the past few hours, and Peter's counts are stable or better than they were a week ago. I'm not talking about major swings, but he doesn't seem to be going down the tubes.

There are a number of mysteries here. I couldn't begin to set down all of the questions I have about what's going on inside Peter's body. During the next few days, we'll be doing all kinds of tests to check out all of his systems. Who knows ... maybe we'll find some weird tumor somewhere that is secreting some toxin that is killing his bone marrow. (Oh, all right, probably not).

Peter decided not long after he arrived here that he was hungry. Eating was (is) out of the question at this point. Peter did not like that answer. He had a bipolar hissy fit, thrashing and crying, for 45 minutes. Eventually it occurred to me that we have Ativan at home that we use when he's having a really, really hard time. The ICU staff were very happy to give him a shot, and it made him much calmer. Then he'd look at everyone who came in through half-closed eyes and slur his words as he said, "is it time to eat yet?"

I don't want to think about what lies ahead. Peter eats compulsively. He has no self-control. He is hypersensitive to the slightest discomfort and freaks out at needles. He is going to be on a very limited diet. He will have at least 3 finger pricks and 2 insulin injections a day. We won't be able to let him out of our sight. We will have to lock all the cupboards.

He is going to rage and perseverate, perseverate and rage. His psych meds make him hungry all the time. He can't take NO for an answer. God help us.

So, we'll be having visits from pediatrician, endocrinologist, hematologist and hospice nurse tomorrow. Heaven knows what else will happen. Peter's already told me 1000 times (in between 5000 repetitions of "I'm hungry" that he WANTS TO GO HOME! NOW! Well, maybe not now ... he wants a burger and fries first.

Carl was here after dinner and Peter (a real Daddy's boy) took his hand and just held it against his cheek for the longest time. He turned to Carl and said, "I just don't know what's going on with my body, Daddy.". Then they both watched some weird NBA/celebrity basketball game with a lot of tall black dudes and Justin Bieber. I am not making this up.

I find it hard to imagine how I can continue my extremely demanding paralegal program now, but I'm reserving judgment on that for now. I have about 20 hours of homework to do this weekend. It sits in my briefcase on the comfy sofa where I'm about to sack out. I don't have the energy to think about it right now. Five days of midterms will start a week from Monday. Yeowch.

I am OK. I just surf from moment to moment, and figure things out as I go along. My inner control freak is a shadow of what it once was. Just one of the benefits of being over 50.

For those of you who pray, I would start with a cheeseburger and fries.
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