As you can probably tell, I am back in the 612 and my first-hand accounts of Sarah's days begin to suffer. My stream of information comes in the form of text messages. A fantastic tool, but I end up with small nuggets of 160 characters or less and manic punctuation to decipher like a coded message. This is not to malign the senders (mom and dad!) but it is the nature of the medium. I have to try to interpret the meaning between the words in the same way they have to divine my dropped vowels. Thrs jst alt 2 try 2 get n2 a lttl spce.
A selection of yesterday's updates:
Dad here this morn. No shower because keep getting interrupted. Now resp therapy bfore phy therapy. Maybe after this. Diff med today. Dad knows.
No bleeds. Sleep til 3. Then every hour on hour.
So from that I try to craft a post. It gets really interesting when auto-correct suggests words that completely change the meaning, like when it changed the Canadian Honker to the Canadian hooker! (You parked next to WHAT?) I know a lot of the info in the middle; it was a bad sleeping night, she had to be suctioned from 3 am on each hour, so she is tired and wiped out emotionally as well as physically, but thankfully no new CSI episode.
Yesterday was a tough one for Sarah. Nothing critical, but after her bleed the day before, changing meds and a Monday. Monday involves rounds of new docs, review of approach and the weekend situation, and just a generally busier day. I guess it is a lot easier to say she had a case of the Mondays. A true bad day puts her back across the hall in the other ICU, this one just kinda sucked.
New meds helped with anxiety ('cause it's hard to sleep when you think you might just stop breathing and you focus on each inhale and if it's deep enough and what's-my-oxygen-level-at how-many-breaths-per-minute, and is-my-pulse-racing? Oops! time for the next breath.) After reading other CFer's blogs, anxiety is a constant companion for them at this point in the transplant journey and can be very hard to control.
Her PT session yesterday showed her how much strength and muscle mass she lost in a very short time. They changed out her trach for a smaller model and took out the stitches, but this one cuts off her air a bit more when she is being suctioned-- which she says makes her panic when she tries to pull in that breath and it's just not there.
Today, however, is looking good so far. (Dad called when I texted him for an update, they'll probably never text me back again!) A good night sleep again, and the new meds seem to be helping. Sarah is hoping to put together something to post, if she gets a long enough break from her PT, OT, Resp T, Meds, chance to shower and change clothes. When she sends it, I'll put it up.