This week has been my best yet! I'll start from the beginning...
A long time ago in a galaxy far, far away...
Oops, sorry. Wrong saga.
*ahem*
Saturday my nurses surprised me: I was moving rooms! I'm still in the same unit, but the nurses opted to save the largest corner room once the patient that was in it moved to another unit. The room was sanitized and re-stocked, and then we gathered up my things and walked right down the hall. I was so excited! Truly I am honored that they thought of doing this for me, when it would have been infinitely easier to just leave it empty for the next patent coming onto the unit. This new room is a few square feet larger than my old one, has a solid wood door instead of the sliding glass doors (better privacy and gets darker at night), and is a corner spot so I hear a lot less noise from the Inner Sanctum. (Not that I minded much before.) I was also able to request a new rolling IV pole, which seems like a small thing, but my old one had a flat spot on one wheel, was loud, and veered to one side like your drunk frat brother when you steered it down the hall. The new one was already waiting for me in my new room.
The most humbling part of this is that over the next 2 days or so, I routinely had nurses and staff stopping by my new room to tell me how glad they were to see me in here, because they had panicked when they walked by 15 (my old room) and saw "me" in bed with lots machines and tubes hooked up. They would grab a nurse and ask about me, only to be told "She's fine! She moved to 18!" A few of the Nutrition Services workers that take my food orders, Celeste, my favorite cleaner extraordinaire, and the ladies that restock my supply carts all had similar reactions, they tell me.
On Wednesday I got to go outside again! This marks my 3rd trip to get some fresh air. It's not an easy thing for the nurses to arrange. They have to get a portable monitor, clear it with the on-floor staff, and then make sure there is another nurse(s) to cover their other patient(s) while we're gone. We're 7 floors up in this building and so they have to navigate me, a wheelchair, the monitor, and my IV tower along hallways and elevators and ramps to the spot they've picked out. (I've been to a different place each time I've gone outside.) It takes two nurses since one has to push the wheelchair/me if we aren't going somewhere close enough that I can walk, and the other nurse pushes my IV tower alongside me. So it takes some serious coordination and then they just let me sit for as long as I want in the sun and air and trees. It's so therapeutic for my leaf-and-stem loving soul. I miss green things. My new room does have a beautiful view of the trees outside. I'm carefully monitoring them as they subtly start to change colors now that we've entered autumn.
Second surprise on Wednesday came that evening, around 8:00. A nurse I have never met before waltzes in to my room and asks me if I want a shower.
I blink.
Reply in the affirmative.
And then before she turns around to walk back out again she says, "I'm sorry. That was probably really creepy to have a complete stranger come asking if you want a shower." And I said, "Not more shady than the fact that I agreed to a shower offered by a complete stranger." A few minutes later a couple of the night shift nurses, Caroline (my nurse for that night) and Dierdre (who I've had before and sometimes fills the Charge Nurse position as well) come to explain. The 10th floor has a shower room that they aren't using tonight and one or more of my nurses called in favors to allow them to let me come up there and use one. At this point I had been 22 days without a shower or a bath. I will spare you the TMI details of what it took to get this done, except to say that the night shift was incredibly kind and chipper the whole time. They easily explained every step of this highly unusual process--which was a new experience for all of us!--and not for one moment did I feel self-conscious or ashamed. I was so content after the shower that I video called my sister and my mom to show them my still wet, but conditioned hair and proudly declare that I even remembered to wash my ears. I might have even cried grateful tears falling asleep that night...feeling normal again for the first time in a long time.
The next surprise was Thursday afternoon. Josh came to see me in the morning, then left for work. Later in the day he called me to say he was getting done earlier than anticipated and would be able to come back by again. I heard his footsteps coming down the hall so when I heard him pause by my door I was very surprised to see his coworker and my friend Chelcei standing there. Visitors have been very restricted both by my doctors and myself. And hey, YOU try not bathing for 20-odd days and then tell me whether you want people coming to visit. IT AIN'T PRETTY, FOLKS. So Josh had brought Chelcei for a quick pick-me-up visit and I was thrilled. They both had to go back to work and Josh promised to stop by again later that evening.
Which brings me to my final surprise. Thursday evening, Josh came back as promised and at one point excused himself to make a call in the hallway.
BUT IT WAS A RUSE, YOU GUYS.
(I'm going to try very hard not to type in all caps but from this point out you should assume that I'm speaking emphatically and with no pause for breath.)
It was a fake out. He didn't have a phone call. He had gotten a text. Next thing I know there are people talking quietly right around the corner from my room and I don't really think much of it until I glance up to watch them go past my door and then they stop and IT'S SAMANTHA AND MEGAN AND IMMEDIATELY I'M CRYING AND THERE MIGHT OR MIGHT NOT BE A VIDEO RECORDING OF ME STANDING UP FROM MY CHAIR SOBBING ASKING THEM WHAT THE HECK THEY'RE DOING HERE AND THEN SITTING DOWN AGAIN COVERING MY FACE STILL SOBBING AND THEN HUGS AND STILL THE NILE IS POURING FROM MY EYES AND IT TOOK ME A SOLID 3 MINUTES TO CALM DOWN ENOUGH TO GET THE FULL STORY.
Damn. Couldn't help using the caps lock. Oh well.
Apparently this has been in the works for a few weeks now. Basically I went to get the right heart cath done and Mom, Sam, Megs, and Josh as well as their respective helpers and family members started plotting to get Samantha here from Utah and bring Megan down from D.C. Josh was in on it and the text was The Signal to move him out of the room so Megan and Sam could come in. There were bets for how quickly and how much I would cry. I'm not sure who won, but approximately 3 liters of fluid left via my eyeballs in about 10 minutes.
Megan and Sam are only here for a couple days, specifically to hang out with me. And right now I'm calling in all my cards and selfishly asking them to spend each day here with me. So for anyone that would normally get to see them on their visits here, you'll have to reschedule because I've missed them both so much that I fully plan on monopolizing them for the time being. It's a sorry, not sorry kind of situation. But I'll leave off here, except to say:
HAPPY BIRTHDAY, Joshua Cummings! You gave me the best gift I could have possibly asked for on your big day. I didn't think I could love you any more than I already do, but I'm thrilled you continue to prove me wrong. I'm a damn lucky girl. I love you, my heart.
That Josh. He's a stand-up guy. Sorry for the late reply, but I have been thinking about you (and missing you every single time I walk past your desk at work) This post made me cry. Hugs! Tracy
Hey!! My name is Danielle and I am going through transplant evaluation with Sanger as well! My three days of testing and transplant consultations are Nov 1,2 and 3rd. My little boy who my ex and I fostered and adopted was born with a congenital heart defect and all 3 of surgeries were done by Dr. Maxey! He is amazing! Thank you for sharing your story! It is always nice to know you are not alone! I will be keeping you and your family in my daily prayers!
You are such an incredible inspiration! When I read your posts I Hank God for you! You are a kind, gentle, and wise spirit! I marvel at your strength and honest transparency as you share parts of your story. Of course, I want you to publish this and I think a children's book is in order... more on that another time! Thank you so much, Elise, for sharing these posts with us! I am humbled and honored to have shared some time with you while visiting your Grandma and Grandpa Yaussy. Few and far between, yet you make my heart smile with fond memories!
Peace, joy, and love, Jill K.
What a beautiful inspiration you are! Thank you for reminding us that we shouldn’t take the small things for granted. Praying daily for you!! Keep up the upbeat attitude…I look forward to seeing your posts!!
My spirit sings as I read about your surprise blessings from this week. A change of scenery. Hygiene spa. Meaningful visits. Functional medical equipment. All good stuff. May these joy bubbles continue to brighten your journey in the days to come.