Home at last

Posted by Roie R. Black on Fri 03 May 2013

Last night, they booted me out of the hospital after a nice 17 day stay! We left the place with a pile of home care supplies, since I am still not fully free to heal on my own. Unfortunately, the swallowing problem is still with me, and I need more time to heal and work on that, so I still have a feeding tube (up my nose) and the trache tube, although that is there just as a safety precaution. My goal now is to heal enough to start radiation treatments, which we all hope will kill off any lingering cancer cells.

A day in the hospital

What is it like to sit in a hospital for an extended period? Well, I never set foot into one for 61 years, so I really had a limited sense of what to expect. The last time I went through surgery, I was in Intensive Care overnight, then another day in a recovery room and then I went home.

This time, I ended up in a standard single person room to complete my stay. In this room, I was still being cared for by a team of nurses and assistants, but the schedule was much less intense. I could call for help if needed, otherwise they left me to watch basic cable (Arrrgh, get me out of this place). The only thing on the news was the Boston bombing, so I am something of an expert on that entire thing. (Where do we go wrong in raising kids? How can anyone come to feel that this kind of thing makes sense?)

Vitals

Let's start a typical day around 5AM when someone comes in to take your "vitals". (I prefer that they leave those vitals with me, since I probably need them. It is terrible being a literal person, I can find amusement in the strangest things.) They see if you have blood pressure, and if you are warm enough, and if you have a pulse all they way down to your feet. The worse thing that they check is your blood sugar, which involves stabbing your finger to get some blood to test. My fingers are all pretty worn out from all those tests. If all is well, they let you go back to sleep. (Yeah, right!)

Rounds

About an hour later, my doctor usually showed up to see how things were going. He is the one who started surgery around this time, so he does "rounds" early, then heads off to surgery, if necessary. On a few occasions, he let me sleep through his visit, and I ended up asking to be awakened to make sure we had a chance to talk so I knew what to expect next.

Now I get to sleep, right?

Wrong. Around 7AM, they do a shift change and a new team takes over my care. So, the old nurse comes in with the new nurse to go over what I an in for, and what will need to be done that day. After that, the new nurse comes back and does another vitals check. I went through around six sets of nurses and assistants, so seeing the same nurse was a bit unusual. They move around in a pattern that makes no sense to me. Maybe I need to look at their scheduling program - HA!

The noise level in the area usually ramps up around now, so going back to sleep was pretty much not going to happen, so I usually fired up CNN to see what new development happened since I last checked. The Boston bombing was always the lead topic during my stay.

I was usually left alone for a time, unless I needed something. Pain medicine was my primary concern. They gave me something for pain about every four hours, and that kept me pretty much pain free during my stay. Something I am very grateful for! I got headaches a few times, and the area where surgery was done ached a bunch, but my pain never got severe, ever! Lucky me!

Exercise

Around 9:30AM, someone would come in to see if I wanted to take a walk. The nurses used this time to change sheets on the bed, and I got unhooked from all the monitoring and pumping stuff and go to explore the "floor". Everyone knows about hospital garb, right? Those funny things that cover your front but leave your back-side hanging out in the breeze! I had to remember to get a Superman cape to make sure my back-side was not exposed on my walks.

I was labeled a "Fall risk", mostly because of the work they did on my leg, so I always had a nurse or nurse's assistant walk with me to make sure I did not fall on my new face!

These walks went very well, unless kids were in the hall. With my new skin and swollen face, I looked like a monster clam had landed on my face and the kids all stared at it. This is starting to worry me a bit, since my ability to teach depends on my standing up in front of a class and not terrifying my students. Well, fortunately the plastic surgeon says things will get better, and we might "tweak" things after I heal a bit, so the actual final look is not known at this time. Still, looking at my new face now is a bit unnerving, something I have to weigh against being alive. All things considered, I am ahead, no matter what!

Once the walks were over, they let me sit in a chair, or reattached me to my bed! I had to be reconnected to all the pumps and monitoring equipment, which took some time to do. They also set up the bed alarms. Huh?

Bed Alarms

The hospital uses alarms in the beds to make sure patients do not get out of bed on their own and hurt themselves. They put a flag on each room where they feel there is a risk of this happening, and the hall was lined with flags outside most rooms. I never got the flag. I told them if they put one on my room, I would work hard to earn that flag! They were not worried, I got along fine with the entire staff. I think my humor level actually raised their spirits. Remember, this is a tough job to do. They face many challenges, never knowing what to expect each day.

Lunch

Actually, I never got a meal during my stay. Instead, they fed me pretty much non-stop through a feeding tube they ran up my nose during surgery. They pumped a nutritious "sludge" into this tube constantly. When they gave me pain medicine, they checked "residuals" by using a syringe to see what was in my stomach. Since what was there had already started to be "processed", they put everything back when they were done. (Does any of that seem weird to you? It did to me, but I understand why they do this. Thy get very concerned that some of your basic body functions might shut down while in a hospital, so they check things you would never think to check!)

I usually had another pain medicine dose, more vitals checking, and hooking up antibiotics to make sure everything healed well, instead of a real meal!

Therapy

After "lunch" I usually had a visit from some kind of therapy person. The primary focus for me was swallowing, so I would go through exercises to see if we could convince my swallow mechanism to get better. It did, but not enough yet! I would get visits from hospital staff to make sure I was getting treated well, or from other support people to make sure I was happy with what was going on. My favorite visits were from Sister Pat. She is a good friend of one of my wife's old clients, and volunteered to stop by and see how I was doing. I enjoyed her visits a lot. She is a very nice lady, who spends a lot of time comforting folks in the hospital.

My personal support staff was around by now as well. Either my wife would be there, or Bill, my cousin from Wyoming, who came down to help us as well. It was very nice to be able to talk about things with them. It really took my mind of of other things that might have been no fun to think about! I had to remember that how things were at the moment was no indication of how they would be later. Dwelling on things just does not good at all!

More Exercise

In the afternoon, I usually took another walk. The hospital floor is laid out in a big "H", so we explored the entire thing. Each wing held patients with common problems, but I seldom saw those other patients. I did see their families (and those darned kids!). I have to admit the walks got boring. I was walking well enough that we spent the time joking with the staff about what they were doing, ordering pizza (I wish) at every counter we passed, and saying hi to anyone I recognized who had cared for me during my stay. It was always a nice break to do these walks!

More TV time

During the afternoon, they left me alone to watch more TV. I switched from CNN to other shows, but the selection was pretty lame. Sometimes I did sneak in a nap, since sleep was needed, and they did not seem to understand that at all!

Shift Change

Around 5PM, they would do another round of "vitals" working up to another shift change around 7PM. Visitors were asked to leave the area during shift changes, so my wife would go get dinner, or go home to check on things around this time. After shift change was over and the new team was finished with their checks, Cheryl would come back to spend the evening with me.

Yet more exercise

We usually took a walk in the evening. Cheryl would walk with me, something we both really enjoyed. The more you let your care-givers know that you appreciate them, the better you both will feel about everything. Remember that! The entire process is very hard on them as well!

Sleep time

Around 10PM, they throw all the visitors out to let you sleep. That is the theory, but in practice I usually did not do so then. Another round of "vitals" was sure to wake me up, and other things could go on to keep you awake. I usually got a dose of pain medicine around midnight, so sleeping was not going to happen much before then anyway!

On one very bad night, a lady on the "floor" was screaming that she needed help to get out of here. It sounded like she was in pain, but I could not be sure. The staff is not supposed to tell you anything about other patients, and I understand that, but I listened to her yell from 2AM to 4:30AM on one night, so I turned on the TV to see what was on as a diversion. Let's see, I believe I watched "Young Frankenstein", good movie to watch when you are in a hospital, right?

Real sleep time

I usually gave up and actually tried to sleep around 2AM. With naps included, I am sure I still did not get eight real hours of sleep, but that was the routine! Eventually, you get into that routine and lost track of the days. It all becomes a blur as time and healing go on!

Home Health Care

My doctor eventually felt that I was well enough to heal at home, so he decided to release me. We had a bit of a difference of opinion between my doctor and the therapy folks who wanted more testing to make sure that I could swallow well enough, but my doctor was in charge, and he decided to leave in the feeding tube and let me work on swallowing at home.

So, after a 17 day stay, I am home. We are all a bit nervous about this, since there are not as many folks around to deal with problems. But Cheryl is there, and you cannot believe how hard she is trying to make sure she keeps me safe and well cared for! I am going to spend a few nights on the couch, because it is more comfortable for me. She has purchased a foam wedge that acts like the hospital bed in letting me sleep mostly sitting up. I cannot lay on the side of my new face which is still sore and healing, and laying on the other side hurts my leg, so I have to sleep on my back, which is not that comfortable. I really need pain medicine after waking up after any length of time sleeping like that.

We are waiting for a "Home Health Care" nurse to stop by to really check things. (OMG! Those blood sugar checks may STILL be going to happen!) Someone will be here about every few days for a time to make sure I am doing well, then we will probably back off and care for things by ourselves. Time will tell.

I am supposed to work on healing and swallowing. I can eat things like yogurt, pudding, and apple sauce, but nothing thicker or thinner. That is the biggest pain in all this. The trache just needs to be checked to make sure it is clean, but otherwise, it is a non-issue.

I have switched to a different pain medicine, and we are still working on that. It does not seem to be as effective as the stuff I was on in the hospital, but it does help. You need to be careful not to get addicted to this stuff. Hopefully, the pain level will go down with time.

Cheryl is also learning how to give me pain medicine and feed me through that silly tube. All of this is no fun, takes time, and causes loss of sleep, but we are getting through it all. All we need to do now, is wait!

Thanks again

I have been overwhelmed with the emails I have gotten from family, friends, students, and even folks I do not know. This blog has generated a ton of responses. You must know that each of you is appreciated, both by me and Cheryl. We are in this struggle together, and you are all a great help to both of us!

Thank you each and every one!

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tags: Cancer