August 4, 2017
Good morning/afternoon/evening/middle-of-the-night everyone. Changing things up a bit timeframe-wise. This is my 'Novella" as opposed to the mini post of yore. I've realized that everything in my/our lives will need to be forever fluid, changing, twisty, unpredictable, and require lots of patience, and yes, humor., and some spell check since my typing skills have always sucked, but mostly because my brain is loosely wired these days.
A bit of a recap of the last couple of days: Tuesday was a "hell" day. Now, we've previously had a couple of those, actually maybe more like a few. The thing is (at least) I knew it was going to be hellish from our schedule and tried to mentally prepare for it; leave rehab via ambulance (for good) at 10:15 for Abby's 11:15 radiation (second time), then her first chemo treatment at 12:30; delivery of all needed medical supplied and equipment to the house mid-afternoon (Ben & Aliza home for that); arrival of respiratory therapist around 5pm (teaching, go over suctioning equipment), arrival of VNA/nurse 6:30pm (teaching, go over feeding equipment, check Abby's vitals, etc). I will say this; next time I have a long day at work with a lot of meetings, I will no longer complain.
Radiation went aok; chemo not so much. They prepared us for the "infrequent chance" that Abby Trotter Grant should could have a reaction, and well, yup she did. So they had to stop it for awhile, give her some other meds to counteract it, and then we were back on the chemo trail. Finally headed home for the first time, arriving in style by ambulance on our small street. Nothing to see here folks.
By now it was about 5:30, and the respiratory therapist (here to teach me/us more on the fine art of suctioning and the ins and outs of the humidity machine) had been waiting for us for an hour at the house - his fault honestly because I left him a message that we wouldn't be home before any earlier. Said he doesn't really check his messages- oh well. But very nice, chatty guy, and have met w/him a few times now. Then at 6:30 the nurse came from Partners Healthcare, basically to go over lots of important type of sh*t, and to set up Abby's home feeding pump. Now folks, I had been schooled a little bit in the fine art of most of these machines while in rehab- maybe once or twice. But now we were home, after a very, very long trying day, we have all these strange people in the house, I'm functioning on average maybe 5 hours of sleep, and now I'm trying to function at a high rate of intelligence. Seems a bit off on the common sense scale.
The feeding pump we have at home is called a "Kangaroo Joey", the baby pouch version of the big boy hospital Kangaroo pump. Even has an 8-bit graphic of a kangaroo jumping across the screen. Fun with medical equipment Now the nurse, who is also very nice, turns the thing on and says "Gee, I've never seen the screen look like this- they didn't change it from the factory settings". My spidey sense immediately starts tingling, as this sounds, well, not good. She begins pressing a lot of the buttons, and then somehow, all the instructions on the screen are in Dutch. She can't figure out how to change it, I'm all over the 'Net trying to find anything on YouTube or elsewhere. Nada. I finally found something that explained what a couple of the mystery buttons were, and lo and behold, I was able to reprogram it back to English, and we were on our way. By the time she left it was almost 10pm, and we finally settled into our first night home. I "slept" in Ben's room to give Abby Trotter Grant space. But settled actually sounds a bit too quaint, as I was up at 1am, from 3-4am, doing suctioning, meds, helping her disconnect from feeding to go to the bathroom, and what are basically going to be the things that will need to happen every couple of hours. At 6am I heard her really gasping, and ran into the bedroom; she was sitting up, in distress, and I looked down and there was her trachea tube, strap that holds it in, sitting on our bed. I'm looking at Abby, gaping hole in her neck, calling 911, feeling a lot of things, one of which that I'm very, very glad that I am not squeamish, because it's hopefully never that you have to look at someone you love looking like that.
Swampscott fire and police were there so fast (shout out to them) and EMTs right behind. Got her oxygen over her trachea fast somehow I had the wherewithal to give them her trach tube and collar which made things go very fast in the emergency room as they were able to quickly insert a new tube and collar because they had the old one to use for sizing. Side note: bless my kids and their ability to sleep- Aliza Grant slept through the whole thing and only was only stirring when I went into her room to inform her of the latest chapter in our made-for-TV Lifetime special.
By 11am we were asked to leave- ok I'm being dramatic but they said we could go home. I had already told MGh that we weren't lookin' good to make our 11:15 radiation, so they rescheduled it for 3:00. Abby really didn't want to go and who blames her, but I did bully my spouse on this one because the docs really don't want you to miss appointments so early on in treatment and would rather have you skip towards the end if nec. because that's when patients tend to be the sickest. Logical words spoken that I can actually relate to.
When we get home, I then had to meet with the respiratory gentleman again- Rob and I were becoming fast buddies since this was our third tete-a-tete in three days. They had replaced our pump yesterday as we had more issues and the tech guy couldn't even figure it out. Won't go into details because I'm sure you'd all be so fascinated that you'd stop caring about global warming, politics, healthcare, the Red Sox and who will get axed next from the Trump administration. I couldn't live with myself if that happened.
It was now almost six and as I looked at the carnage around me that was now our house, it was beginning to look like one of those "Hoarders" shows that I came across once. Maybe they'd come to my house and un-hoard me- make a show out of it? Free syringes all around- my treat. That night- Wednesday I think I'm talking about at this point- that night we both slept fitfully-Abby wanted me back in our bed and it was a bit easier than sleeping in Ben's room because I could hear her breathe and gauge how she was doing. Downside is hard for me to post at night now, or watch TV to chill if she really wants to sleep. Can read for a bit, but usually too tired to comprehend anything. Will figure it out as we go.
Still figuring out how to deal with the fact that for the short term, I can't go back to work, and am now not drawing a salary. My boss has been great and as understanding as he can be- small company so not like there's a big bennie package. And I will be teaching two different classes again at Emerson, at night, starting after Labor Day. Going to be very interesting to see how many Craig Grants I can clone between now and then. And as long as I'm doing the cloning thing, I'm going to make myself a tad taller, and maybe take the nose in just a bit. If you've managed to make it all the way through this post, you definitely deserve a medal, and most definitely need to get out of the house more often. Love to you all, and thanks again for being there.
Comments