A big few days around the Vampfamily lair of late. The fundraiser that was put on for Vampbaby was a wonderful event with over 250 people, auction items, and priceless love and energy that Vampmommy and I can only begin to appreciate. It was amazing to see so many people come out and lend a hand — even the local TV station did a short piece on the evening news about it. (I should note that several folks have emailed since my last entry saying, “Hey, I didn’t know about this!” I did post the info earlier, but anyone who is interested in the support being coordinated for us can email firstname.lastname@example.org for info.)
Vampbaby came home on Friday, with a marvelous contraption known as an NG (or nasal-gastric) tube. This is a slim tube that goes up the nose, down the back of the throat and into the stomach, to assist with feeding when taking food by mouth isn’t an option. While it worked in the hospital, the evening after returning home his tube came out, following a sneezing fit where he rubbed his nose and pulled on it. (Isn’t this fun?!? Perhaps I should have warned you to put down that bagel before reading on. Yuck.) Since inserting a 15-inch tube down my son’s throat is not my idea of a good time, we had to await the visiting nurse to re-insert it. This left us for a few hours without a way to give Vampbaby the anti-nausea medication he needs to keep from replaying the pea-soup scene from The Exorcist. That, coupled with a missed dose of the precious drug, due to my total inability to remain conscious in the middle of the night to administer it, put our little guy into a downward spiral that brought him back to the Emergency Room at Chez Healing Sunday afternoon.
This visit brought the experience of us staying in the “Comfort Room”. As we have joined the regulars on the floor in negotiating for a private room during our visits, we often marveled at the mystery private room with the hardwood floors. Shaped like a hexagon with a dent in it, the room is not only private, but spacious. The lack of closets can be overlooked when you can fit your entire family in for a quality visit.
It was a few weeks into our treatment journey that someone explained to us that the “Comfort Room” was used for patients for end of life care. When such a patient doesn’t exist, the room goes to another patient that just needs/wants a private room — as it went to us this past weekend. Yet, as I laid in the crib/bed with Vampbaby, I pondered the events that have taken place there; the grieving parents, siblings, friends. The absolute devastation that Vampmommy and I can only have nightmares about, becoming people’s realities right in this room. We made a conscious effort to shake off the imagery, but it was not easy.
Vampbaby is home again, although his immune counts have already dropped, meaning his visit might be short lived. A banner, signed by all of the participants at the fundraiser, hangs over our kitchen table. There are balloons in the corner (Mylar, of course) and the wall of cards continues to fill. As I type tonight, I realize that I’ll take the comfort I get from this space over the “Comfort Room” any day.