Continuing adventures, a brief poop story, and it's not all about me

It is Sunday night. I am still here in the Penthouse suite. A room with a view and all the amenities. Well, almost all. No HGTV.

This visit continues to have peaks and valleys. Sometimes I feel really pretty good. Able to get up alone, to eat, to walk, etc. Other times I am writhing on the bed in agony from the nausea and would sell my soul to make it stop. If we could figure out the nausea trigger, I would be a very happy person.

The gowning parade continued through part of today. The theory is that I *could* have c-diff, although no one really thinks that I do. The way I prove I don't is a stool sample. This I have been unable to provide.

The first problem was going thirty hours without food does not make your body want to  poop. Nothing to work with, so to speak.

The second problem was being a "Fall Risk." Once you earn that label, it is hard to shake it off. They don't just want to help you out of bed and shepherd you to the bathroom. Oh no. They want to stand there and supervise your bathroom experience out of the fear that you will topple forwards off the toilet like a dying Elvis. For me, pooping for an audience is not conducive to my success, or, frankly, my good will.

The third challenge is that this particular activity is not always quick. Sometimes it means sitting and waiting for my colon to figure out what I want it to do. Fine at home, but much less so when a person is standing and waiting for the command performance so to speak rather than actually helping someone.

Take 19 different meds that all have the side effect of drowsiness and you'll find yourself nodding off in the middle of stuff.

Anyway, I was finally able to achieve my goal, but because it wasn't 'runny' the lab won't test it for c-diff. Precautions lifted anyway. Yay.  Too bad it wasn't before a thousand yellow paper gowns were wasted.

After the sleepless Thursday night into Friday, I was looking forward to a good night's sleep. I went to sleep just fine. I woke up at a little after midnight really needing some sort of pain relief. Junko was right there and she got me the Tylenol.  At the same time she did vitals and hung the fresh bag of Clindamycin.

Enter 3:30 am and I am miserable. I am literally writhing with nausea. Junko again is right there. It took three meds, two...

And, the medicine took over last night and I fell asleep typing, mid-sentence. Sorry about that. Let's try again.

That was, it took three anti-nausea meds, two by g-tube and one iv to stop the horrible nausea/gut pain. I really think this is the antibiotic, but others seem to disagree. We'll see.

On Saturday, I had Darla, a nurse I know well from my previous stays and she was wonderful as always. The swelling in my face seems unpredictable. It will go way up, then down some, without much rhyme or reason. Being more upright makes it drain down (gravity works) but this isn't always a vast improvement as once it hits my jaw line, there really isn't a good route for it to drain down without the help of my pit crew. At home I was putting heat on my chest and back while icing my face. This helps some, but is harder to achieve in the hospital.

I also got the promised biopsy. Oh, how fun. They have tool that looks like a scissors, but it has a little scoop at the end, almost like a tiny melon baller. Since I cannot open very wide, they are using the scope camera to guide them. One doc has the camera, the other the scooper. I'm not really sure how they are doing this, but I don't want to look. They scoop four little pieces off of my soft palate that are "grey" although they look pretty pink to me on the telfa pad. No, they couldn't numb the area. No, there is no way clean up that blood. That wasn't too bad, was it? Well it wasn't the worst, but I assure you, I've had more fun.

Saturday night I have Junko again, thank goodness. I hoped for a better night. It mostly was until around 6:30am when the nausea came to visit again. This is not a great time as it is shift change starting and getting meds is tough. Somewhere between them I got two drugs down and it finally stopped. The doctors rounded in the middle of this, which turned out to be a good thing as they got to see the agony first hand. Unfortunately, Kelly wasn't here yet to get their report.

The dental team looked at the CT scan. They feel all the issues are related to the radiation. This makes sense as this tooth would have gotten the maximum exposure both times. However, because of this, there is nothing to be done. The tooth can't come out as it and the surrounding tissue and bone are too fragile. So now it becomes a pain management issue. Oh goody. Because I have so many options for pain management.

The doctors promise to come back and talk to Kelly later as I was not in any condition to ask questions or process information.

Once the nausea gets under control, I pass out from the meds and sleep like the dead for two hours. After that and some breakfast, I feel human again. I can walk around, sit up, and function. And, as I mentioned earlier, produce the desired sample.

Jeremy, the world's greatest CNA, finally gets to give me the shower he desperately wanted me to have yesterday. Part of the issue is that I am supposed to get wiped down with the chlorhexadene wipes every day because of my port and that never happened on Saturday due to my nausea fatigue and drug hangover.

Showered, clean gown, clean bed, and food and I am feeling almost human.  The doctors do come back, as promised. They answer all our questions. They do not criticize our ideas, down play our concerns, and are not condescending in the least. To be honest, they were as wonderful as two people delivering crappy news could be. While long term meds never excite me, the fact that there are at least options to discuss is kind of good.

All of this leads me to believe if we can clear up whatever this mystery infection is, between a healthy diet, good herbal supplements and drainage/pain management from the pit crew, this will be at least manageable. I likely won't be able to do somethings I could before, but who knows. I'll give it my best shot.

Another thing about being in the hospital, in isolation, and trapped inside my head, is that you get a lot of time to think.  I try to avoid dwelling on the nevers, the never agains, and the probably nots. There are some things that are so emotionally jarring for me, such as not being able to read to Karissa, that I really have to just not think about them at all.

However, I finally came to the realization that it isn't all about me. While I am disappointed at the things I cannot share with my daughters, it is okay that other people are able to give them these experiences. Having the experience is more important than who is delivering it. Other people can read to Karissa. Other people can show my girls the beauty of hiking, fishing, baking and cooking. Yes, it makes me sad at times. But I have to focus on the good part. The part where all the amazing people who have surrounded us and helped our family move forward have given us all many powerful lessons. That is a gift of epic proportions and is not to be overshadowed by my own frustrations.

So here we are on a brilliantly sunny Monday morning of Labor Day. Thanks to an unending stream of drugs, I have slept and slept and slept. The doctors were here and agree that the antibiotic is likely the source of the nausea and they will see how much longer they think it appropriate.  My breakfast is here as well as my nurse, so I should just get this posted.

Until the next post...

Love,
Kiara