Chapter Twenty-Five: The Ryans Arrive

Not much happened today. I made scrambled eggs for breakfast (they were originally going to be an omelet, but the hotel stove and frying pan heat so unevenly that half of it was cooked completely before the other half had even started to firm up), and began to fervently wish I had the cooking equipment I use at home. Seeing this, Dad suggested we buy a worthwhile skillet. The next two months suddenly became much more bearable (and far more delicious). More

Chapter Twenty-Four: Scrabbled

Today was pretty relaxed. I woke up early, got meds started, and tried to get some more sleep. Failing that, I decided to read a bit more of Blue Like Jazz, a book that was lent to me some time ago but that I never finished. I recommend it, since it speaks about religion without sounding preachy. Also, the narrative jumps around a lot, much like my own writing. Many thanks to Laird for introducing me to it. More

Chapter Twenty-Three: Brinner

Today was a good day. Unfortunately, it got off to a lousy start as I woke up in more pain than I’ve had since discharge. More

Aside: Catching Up

So I realized today that there are a bunch of pictures that I never posted back when they were current news. Some of these leave pretty big gaps in the story so far, so I’m posting them now. Better late than never, I guess. More

Chapter Twenty-Two: Suite Deal

I’ve officially moved out of Cleveland Clinic and into the hotel which will be my home for the next few months. Unsurprisingly, not everything went as smoothly as planned. More

Chapter Twenty-One: Tubes

Warning: Pictures attached to this post may not be suitable for the faint of heart, the weak of stomach, or the currently eating. More

Chapter Twenty: The Inpatient Experience

I’ve been inpatient (that’s with an “n”, not to be confused with “impatient” which I have been striving not to be) for about two weeks now, here at Cleveland Clinic. Things here are very different from Children’s Hospital Boston, where I have traditionally spent most of my hospital stays. Of course, having just had the most major procedure I’ve ever undergone might account for some of the differences, but I’ll run down some of the notable disparities for those who are curious.

Firstly, while I am required to have a parent or staff member accompany me outside of my room, I am not under 24/7 room arrest the way I am at Children’s. I must, however, wear a gown and a mask anytime I leave the room. I am permitted to take as many walks as I want, as long as I am supervised (mainly due to the fact that I’m still on pain medications and therefore a fall risk). I am not, however, allowed to roam around the hospital public areas, but I am permitted on the rooftop pavilion (where I visited twice today due to the nice weather).

The food here is very different from Children’s. Their menu changes daily, and I am asked to fill out my choices every day for the following day’s meals. Some of the food (e.g. fried chicken, breaded tilapia, cheeseburger) is fairly good, while other items (e.g. meatloaf, spaghetti and meatballs, pepper steak) are… passable at best. Nothing five-star, obviously, but better than I expected to be getting from room service (particularly after the first few days when all I got was broth and tea).

Calling for a nurse, unlike at Children’s, may or may not produce any results. This is rather alarming at times (like when I spend two to three hours repeatedly calling in the nurse and requesting a dose of pain medication, only to have her ask each time “didn’t [other nurse] bring you in some?” and act shocked when I reply that she herself was the one who had promised to bring it, only to leave (“to go get it”) and not return until half an hour later when I call to find out where she went. A bit disappointing, to say the least.

Few people must ask questions here, because most of the staff get very perplexed when patients (particularly deaf ones, I guess) ask for explanations of treatments, procedures, medications, et cetera. I received blood sugar checks four times a day since I came to the floor, often resulting in high results (I’m on Prednisone, a steroid which causes blood sugar levels to increase, so this is totally expected, by the way) and “requiring” me to have insulin shots every time. Despite having no medical history of insulin dependence or high blood sugar, and despite their knowing the reason for my increased levels. They finally adjusted the Prednisone dose and have stopped sticking my fingers (though six of my ten digits still burn from the repeated abuse).

Heparin is not used in PICC lines here. Instead, they run a continuous flush at a KVO (keep vein open) rate, or just clamp them off and hope for the best. They do, however, insist on subcutaneous heparin injections to prevent deep vein blood clots. These injections are the bane of my current inpatient existence since heparin (an anti-clotting agent) does not heal well when injected directly into a subcutaneous (upper arm, thigh, stomach, butt) site. They’ve been using my arms per my request (legs too swollen and stomach is still stitched up and tubed up) and I have lines of, essentially, blood spots that look roughly like large mosquito bites and feel like bee stings (even after they’ve been healing for days).

The tubes that I have had in my stomach and chest (to drain any fluid buildup in my chest cavity) have been reduced again, and only two now remain. The long tubes and dry drain boxes have been replaced by small bulbs that are much easier to move with. The last two tubes will likely be removed within the next couple days, and I will be discharged soon after that.

On a more pleasant note (tube pulling is one of the most painful things I’ve gone through during this entire experience), I’m getting my hair cut tomorrow by the hospital barber, who I hope is more qualified than the University barber at school (after seeing what they did to Brad’s hair there). There will be pictures up as soon as I can get them to show the before-and-after. Some pictures are already on Facebook charting my progress, for those who are interested.

I’m sure there’s more I could write but at the moment I’m feeling a bit uncreative, so I’ll make tomorrow’s post (or Friday’s, depending on when I can get pictures uploaded) more entertaining. Consider this “the news” and tomorrow “the comics” if you will. The stuff from today is important, but tomorrow is the stuff that will (hopefully) be more entertaining.

Thank you to everyone who sent well wishes via text, email, Facebook, or snail mail. The coming months (yes, months) will be interesting to watch since I’ll be living in a hotel in Cleveland before I can return home. The only things I have planned are to see a Red Sox game (tickets here are cheap compared to home – and more importantly, not sold out already) and to eat at Seti’s Polish Boys. I also hope to go golfing at some point, since there are golf courses all around.

Consider this my formal request: anyone with Cleveland-area ideas (food-related or otherwise) for things to do, please leave them in the comments. I’ll try as many as I can, and will make sure to credit you with the idea if I do. Thanks in advance, and you’ll see post-transplant me (finally) by the weekend.

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