“Fate is like a strange, unpopular restaurant filled with odd little waiters who bring you things you never asked for and don’t always like.” ― Lemony Snicket
Lemony Snicket. If you haven’t read his books, he’d be the first to tell you not to. We’ve met him and he did. Since we’re still on the lemon regimen, seemed like his morose and quirky brand of philosophy, along with his name, would be fitting after a night of little sleep.
The hiccups continue and Rich has been very concerned about the acidity of the lemons. For a day, he decided he was not going to use the lemon therapy. He tried a mix of anti- nausea medications to see if they would do the trick. Sadly, no. And the night was filled with the sounds of seals and whales and all manner of marine life. Sleep eluded us.
We try the Thorazine again and for two hours the sounds of the ocean deep recede. The problem comes when Rich wakes up very disoriented and tries to ‘unbutton’ the IV connections. This apparently is necessary in order to use the bathroom facilities as far as he’s concerned. For the next twenty minutes, Rich appears to be very amused by the rules I’m imposing upon him. He seems to be reliving his fraternity days (and nights) where sinks were multipurpose when it came to bodily functions. “Oops! Too late!” We figure later that this is probably due to a mix of meds but as the stem cell doctor tells us when we discuss it with her in the morning, even if the meds were all the same as at home, we’re in an unusual situation and the body reacts differently than it did before. She assures us that the ant-acid medication that he is receiving will forestall any mouth and digestive issues that might otherwise be a problem with the lemons.
A few times now Rich has had this nighttime disorientation… sometimes he remembers them and we trace back his confusion to whatever was on TV at the time. This one he doesn’t remember so I recount to him the mischief he was up to and the amusement he seemed to have with the whole situation as it was happening. So now we’re back to our lemony hiccup arsenal. We’re trying the Thorazine again as a solo act. I’ve got the Omega Sigma Psi paddle ready just in case.
We’re now at what we figure is close to the halfway point in this hospitalization. And halfway through the low blood counts. Which means we’re getting close to the next milestone. That will be when his bloodwork shows that the stem cells have engrafted which should be sometime in the coming week… the point where his white blood cell counts begin to rise. In the meantime, he’s received three units of red cells and two of platelets to date. These give him a great boost in energy the following day.
And he needs that energy. His days are full. There is a mouth regiment five times a day to forestall sores. There are the hourly breathing exercises. Twice a day laps up and down the little hallway outside our little room. Showering is a slow process as the IV’s need to be disconnected from his triple lumen catheter, flushed, and covered with a waterproof patch only to do the whole in reverse after. The entire shared bathroom is disinfected and draped, spa-like, with towels. Meals: deciding on meals, ordering meals, eating meals. Reciting his name and birthdate with all the meds administered. Daily rounds with the doctors… question after question after question. Vitals checked. Patient weighed. Catheter maintenance. IV’s, tons and tons of IV’s. His day fills up. And thankfully, the days pass quickly. Each day closer to our goals. The nights however… man o man are they ever long! Each side effect of this process is magnified in the overnight. We hook up the laptop to TV and watch Netflix selections. But then it is hard to nap during the day with all the interruptions since every.little.thing. is monitored. Everything.
Despite all this, the weekend has been wonderful. Our family all came down from Rochester and our hearts, as well as the hospital room, were full. Tho’ hugs are verboten, just having the time with each of the kids, Richard, Emily, Nick, Andy, Noelle and grankids Jake and Mark, was heaven. We treasured each and every moment with them all and now count the days, not only post- transplant but til we see them all again. Our goal is to join them all in Rochester for Thanksgiving. In the meantime, we spend our time looking at all the photos we took this weekend and look forward to more on Facebook as well as those messaged to us by our kids and especially those from LaValle Stephan as she babysits for the little ones during the week. We could not have asked for better partners in Grandparenting!
So, as this long holiday weekend, which went by way too quickly, comes to an end, we are once again alone together in our little room in the little hallway. But still surrounded by the love of family and friends.
As our author Lemony Snicket once wrote: “I will love you as a drawer loves a secret compartment, and as a secret compartment loves a secret, and as a secret loves to make a person gasp, and as a gasping person loves a glass of brandy to calm their nerves, and as a glass of brandy loves to shatter on the floor, and as a noise of glass shattering loves to make someone else gasp, and as someone else gasping loves a nearby desk to lean against, and if leaning against it presses a lever that loves to open a drawer and reveal a secret compartment. I will love you until all such compartments are discovered and opened, and until all the secrets have gone gasping into the world. I will love you until all the codes and hearts have been broken and until every anagram and egg has been unscrambled.”
Of course, he also wrote: “If you are allergic to a thing, it is best not to put that thing in your mouth, particularly if the thing is cats.”
So there is that.