Settling in at home

It's been 48 hrs. since discharge, and the sailing has--so far--been smooth. Little bit of a scare this morning when one of our digital thermometers showed Sam with a temperature of 99.5 (F)--the threshold for a phone call to the hospital, if not also a visit to the ER. Another thermometer, however, read considerably cooler. Sam looked good and didn't seem distressed or uncomfortable, so we rode it out a bit*.

Sam is sleeping (pretty) well, and that's nice for all of us. We had no idea what to expect given that: he's twice as old as he was when he last lived at home (and was just beginning to sleep for up to four or five hours at a stretch); the last five-plus weeks at Children's weren't exactly conducive to reinforcing any kind of normal sleep pattern.

Sam and a suspiciously affable Mr. Shark

Alyson and I administer seven different medications to Sam each day. Most are given once daily, but a few are given several times. Fortunately, Sam is being weaned from a couple of those (methadone, Ativan) and will be off them by early next week. He's also being weaned from dexamethasone, a steroid used to suppress the inflamed white blood cells that were attacking his body. That wean, however, is very slow, and may be halted if future labs show evidence that HLH is mounting a counter-attack.

The home-care nurse made her first weekly visit today to change Sam's PICC line dressing, weigh and measure him, etc. Sam weighed in at 9lb 4oz,--a tiny bit less than when he was first hospitalized. The dressing change went well, and the rest of the visit was, I'm happy to say, entirely uneventful. (I found it reassuring to have a nurse in the house for a bit.)

It's great to have Sam back. Having to administer meds, take his temperature (mantra: Please don't hit 99. Please don't hit 99. Please don't hit 99.), flush his PICC, and otherwise avoid infecting him with, well, anything, is nothing if not anxiety-producing. But Sam smiles a lot, and that goes a very, very long way. (The best, I think, is when he smiles while feeding.)

Apparently unimpressed by mom's new haircut

* The nurse's thermo agreed with our "cool" thermometer, so we've retired the other.