Where to even begin...

When last we left, I was home from ER and plowing ahead with antibiotics. That would be a fine description of Tuesday evening and the bulk of Wednesday. Pretty much hanging out on the couch, doing some crocheting, watching some TV, and swelling. Swelling of epic proportions.

By dinner I am so swollen my left eye is nearly closed. Everything is tight. Having learned my lesson about antibiotics and an empty stomach, I take them after each meal. Still I have been unable to get in all four doses. By the third (1350 mg at that point) my stomach has had all it can take. Wednesday night it reacts violently. I am trying not to vomit. The room is spinning so much it is hard to be rational. Kelly shoves it two different anti-nausea meds, which at least brings it in to manageable. But it is clear my stomach will not take much more of this. Hopefully we can sort out some answers tomorrow. If only I had known what that sorting would involve.

We skipped the first dose of antibiotics as barfing on the oral surgeon seemed like a bad way to start off. Sadly, it took me longer to fill out all the paperwork than we were actually at the oral surgeon.

The dentist, Dr. L, had warned me that Dr. H was an acquired taste. Yeah, no kidding. He came in, made one attempt to look in my mouth and gave up. He said this is why we usually pull all the back teeth before radiation, to avoid this. Like I had never consulted anyone about my teeth beforehand or had just opted for more pain later on. No, he has no advice on the antibiotic situation. Go back to OHSU and have their dentist take you to OR and pull the tooth. Good day.

Alrighty then. Kelly calls Dr. L to see if he has an idea for the antibiotics. He only works M-W. Nice gig if you can get it. Kelly calls OHSU. They can see me Tuesday. He calls the oncologist. Out of town until next week. He calls my GP. She is booked out the next two days. I can come to after hours clinic at 6. Great. How much explaining will this take?

I pull the call out and Jen came and picked up Karissa and generously offered to have her stay the night. Thank goodness after the way things unfolded...

My GP's office called back and said they had a cancellation. Come at 3. Great. Again, if I knew then what I know now, I'd have eaten first.

Dr. T is her usual sweet, wonderful and thorough self. She agrees that the antibiotic is doing more harm than good. We can try another, or switch to iv. However, iv requires hospital admission. Fine. Just make my stomach stop hurting like this and clear up this mess in my face.

This is easier said than done. First she calls my ENT to see if he will admit me. He is going out of town, so he isn't comfortable doing that. He recommends a hospitalist. Okay. She gets a hospitalist and he agrees to admit me, but Riverbend has to find a bed first. All this time, all the waiting, we are hanging out in an exam room. Thank goodness we didn't have to subject Karissa to this. At last they find me a room. She gives me the room number and says to head straight over and check in. On our way.

We get to Riverbend and head to the main admission's desk. The room isn't cleaned yet. We'll need to wait a bit. It all has a resort feeling to it, except that whole eye swollen shut thing. Actually, the swelling seems to be better, but the fluids in my face are worse. Odd.

Once the room is clean, up we go. I've never just walked in and gotten in bed. The nurse seems a bit mystified by all my extraneous gear. I guess I'm not the norm. He in fact, does not recognize my trach and asks if it is a voice box. Um, no. He and the CNA are in and out, but no one can do anything without orders. So more waiting. And waiting.

Respiratory comes by and is immediately on alert. I need humidity. I need an ambu bag. Do I have the attenuator for the trach? Let us hook up the suction. They were right on.

But they don't have a suction tip that will fit in my mouth. No, they don't have the freezy spray for the port. No, they have never seen...   not feeling really confident.

The hospitalist comes in. He called OHSU and spoke to Dr. W (he did the flap from my back for my flongue). Once they wade through my health history, it is decided OHSU would be a much better place for me. Okay, fine. But they have no beds, so I am wait listed for a bed. Fine. Let me get some meds going and eat and it will all be fine. Or...

Everything seems to move at a snail like pace. Blood is drawn. Port is accessed. They take me for another CT scan (Dr. W's suggestion)-- a head and neck CT with dye contrast. Yum. Sarah's very nice husband stops by to introduce himself. He would be involved in my treatment if I was staying, but since I'm not he just wanted to meet me. Nice guy!

No food is going to come. Questions about the bathroom. Questions about the swelling. Finally around 10:50 pm, they get fluids going and start the first of two antibiotics.

Or not. At 11:00 medical transport shows up to take me to Portland. Why do I have to go via medical transport? I have no idea. But despite the fact that it is medical transport, they can't leave me hooked up to the fluids and antibiotics. Why not? I have no idea. So ten minutes of fluids and antibiotics. No food. Pumped full of iodine. Sure, I'd love to ride two hours facing backwards in an ambulance on a gurney. What could be more fun?

Off we went. The guy in the back with me was nice enough and we chatted enough to make the time pass. His partner made good time and we backed up to OHSU right at 1 am.

Except we are at doors I have never seen before. Inside, there is a big D by the elevators, so I know we are in the wrong part of the hospital. But I have no idea how to get to the Kohler Pavillion from here.

We go up to the 13th floor. No, this doesn't even look vaguely familiar. We wander the halls a bit and finally find someone cleaning the bathrooms. He says we have to go back down to floor ten and over. Alright.

Back to the elevators. Down to floor ten. There are many signs, but not one says Kohler Pavillion. None of this looks even familiar, either. We finally end up down by emergency. Someone there says we have to go down this long hall, always keeping to the left, until we get to the Kohler Pavillion, then go up to 13. Off we go again.

At least this time we see signs with the right place on it. We get to the right elevators and head up to 13. I am in room 14. I've never been in this room before. I can't believe it when they wheel me in. This room is huge. Easily twice the size, or more, of the other rooms. A spectacular view out huge window. It is all very beautiful. If I was on vacation.

I have a nurse I've never seen. He is very nice, but seems unfamiliar with some aspects. Turns out he is from the float pool, so he isn't a regular in here. He gets me situated, but didn't have respiratory come. He can't start fluids until he has orders so they can flush out this yucky dye.  On the upside, the swelling seems to be improving, but the drip from my nose is worse. Ugh.

The ENT on call is coming any time now... so no point in going to sleep until he does. Vitals. Bathroom. Trying to find some remotely comfortable position in the bed after two hours uncomfortable on a gurney. Sigh.

At four am, Dr. C shows up. He is nice as nice can be, thankfully because I am a little cranky at this point. I get an exam and a scope up my nose. Fun times. The team needs to talk about antibiotics, but he'll order fluids and pain meds. And off.

A minute of sleep here, ten minutes there. Everytime I manage to fall asleep, my phone bings, someone needs vitals, or to ask a question or something else. The smaller doc team rounds at 6 am. They need to talk to Andersen first.

Shift change brings another flurry of activity. The day nurse is a familiar face. She right off calls for respiratory to come and get me set up. She is very concerned I am a fall risk, so please no getting up without her. She evaluates me the first time and I don't do well. Hmmm... no sleep in nearly 24 hours, no food in over 18 hours. I can't imagine why I'd be unsteady.

The very sweet CNA wants to know if I want a bed bath. No. I want some sleep. Please, a little bit of sleep. She'll come back. Please do.

I do manage to find a remotely comfortable position and go to sleep. I think I got about an hour when Rachel came in to see me. She is the wonderful SLP and I am so happy to see her, except I'm so tired I can hardly think straight. I know I had questions for her, but I can't begin to get them out. We just end up having a short visit. And that seemed to be the cue for it all to begin again. Sigh.

Andersen is tied up in an emergency. I understand. I've been an emergency. Turns out we learned later that he was working on the police officer who was shot in the face. More important than my issues by far.

Still, I like to eat at some point. Are they starting antibiotics? What is the treatment plan? My nurse pursues these for me as best she can. There seem no easy answers.

Since I *COULD* have c-diff, although no one really thinks I do, everyone in/out of my room has to gown and glove up. Poor Kelly has been stuck in a yellow paper gown and purple gloves all day. Also, because I have a port, there are extra precautions there, as well. After my bed bath I get wiped down with the chlorhexadine wipes to reduce my bacteria load. Good times.

The day passes in herks and jerks. Long periods of no news, then everything piled together. Then stretched out again. No, they don't know when I'll get to eat, but they'd really like a stool sample. Good luck with that after 24 hours of no food. My trach is a novelty and sparks much discussion. Otherwise, just a lot of lying around and waiting.

The ENT team comes back at last. They are not convinced this is an abscess, or even an infection. Could be necrosis. Could be infection. Could be... please don't go there. Please don't.

A fun half hour of scope in the nose, scope in the mouth, suction nose, suction mouth, scope again. What do you think? What do you think? We should biopsy that spot, bring me a...

Wait, what? My blood pressure is now in the stratosphere. I'm really not excited about any of this. However, whatever tool they wanted to use cannot be found, so they will come back later. A momentary reprieve.

But they do, at last, okay food!!! Kelly calls to order it. It will be up in an hour. Nothing like 30 hours without food. And the nurse wants Kelly to show her how he does the trach pull and clean. And the ENT team is coming back. Argh!

Food does finally come. Yay for food. Not the greatest food ever, but food at last! After I eat, Kelly gives a lesson in trach pulling and cleaning. The nurse is appropriately impressed. They also apply the antifungal to my neck recommended by the ENT team. I also get to swab my mouth with some chlorhexadene. Not exactly an after dinner mint. Yuck. Shift change comes. ENT stops back by to say I get a reprieve until very early in the morning. I don't know if that is better or not. They do start the antibiotics back up, though. Within an hour, the swelling has increased, but my nose is so much drier. Also I am able to suction a huge gross glob out of my mouth. I'm not sure what any of this means.

Tonight I hope for sleep. I miss my girls. I miss sleeping next my husband. I miss not having stuff drip out of my nose.

And I'm really pulling for necrosis or infection. Please. Please. Please.

For the occasion I have blossomed an enormous pimple between my eyes. Lovely.

I don't know how long I'll be here. While this is a lovely room, I will be happy to go back home. I will be happy to get back on working on building strength and mobility and not worrying about this gunk. I'm ready to stop having a face that looks like a prize fighter.

Please keep saying those prayers, or sending out vibes, or whatever your belief system. Hug your kids, kiss your spouse, watch a sunset, take a walk and appreciate the beauty that is life.

Until tomorrow's adventures!

Love,
Kiara