I will try to recreate some of the last 36 hours. Some I will blissfully pretend did not happen.
I went into Sunday night tired, sore and wanting to go home. I have been nagged six ways from Sunday about taking in more tube feed. Ugh! Respiratory therapy came into check my oxygen humidifier. It was my old friend with the Hindenburg device. He noticed I was really struggling. Lucky me, I gave me a deep fish. This means he pulled out my cannula (the inner part of my trach), dumped down two shots of saline and proceeded to suction out stuff my ancestors had breathed in. Far from pleasant, but it really cleared stuff out. After that, though, her rearranged the furniture in my room for a better Feng shui. Okay.
It was a long night of "let met wake you up to give you this, check that, poke this." At some point I realized I could hold my nose and play music out the drain site on the right. Basically no sleep. I was pretty much on the edge in the morning when the ENT team arrived for another rendition of why aren't you taking in more tube feed.
Subsequently I had a pity party for myself. Missing my girls. Wanting to go home. I must have looked pathetic because they said I could get dressed and go outside in the sun. Instead of making me feel better it made me feel worse. Not pretty. Not pretty at all.
Blew another IV. Seven more conversations about tube feeding. The nurses say they are trying to give me too much in too short a period of time. The doctors say I need more nutrition to heal. I say the reflux is brutal and the vomiting is worse.
Finally I managed to shake it off. Kelly and I were taking a walk and the ENT team appeared again. They need me. The drain they put in, cut off, pulled out, replaced, pulled out, and then packed, was now going to be replaced, again. Good times. Fortunately I don't have really any feeling along that part of my neck, so no pain.
We returned to walking. I coughed. Suddenly I could feel something new in my mouth. This set off another storm of this doctor, that doctor, the other doctor. Sigh. It was decided it was just a stitch. Craziness.
I thought sarcasm was difficult with a magnadoodle. Anger is harder. How do you express frustration with bits of magnetic dust? I went to bed at 7:45.
Today should be better. Dr. Andersen was here. I have a fistula in the right side of my neck, which is why I can whistle out it. Antibiotics being "refined." No radiation, though since the nodes were clean.
I want to blow this popsicle stand.
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7 comments:
Oh sweetie. I understand. You are so brave. This is all so unfair and so hard. You have been more than strong and you have been an inspiration to everyone. Yesterday was a bad energy day for us too and for many others I know. I hope the positive energy flows your way today.
Aww Kiara, no post last night had me wondering if all was ok. I hope today is better for you. The ENT mob..."Eat, You'll feel better" lol is a comedy routine to be written, I'm sure.
How about a dry erase board with colored markers?
I wish I could put my arms around you and make it all better. That's what Mom's are supposed to do.
Hang it there, Love, it is almost time to pack your bag and head back to the ranch. You are doing amazingly well considering what you just went thru these last weeks.
And if you want to vent, send me a private e-mail and let it all out!!
The more 4 letter words, the better.
Hope today is a much, much better day for you.
Love & hugs
xoxoxoxo
no Radiation -- yeah!! That's key glad to hear it-- So sorry things are dragging on in the hospital. a corner will be turned soon no doubt.
Deb M.
I hope today is better! That seems to be the cycle...
Miss you!
Sending positive energy your way.
Kiara, somehow you are still funny--even if it is in the most painful of ways. I, unfortunately feel like I have a relatively clear enough idea of what draining tubes sound like, and what not sleeping with 87 tubes bells and whistles attached to you is like. You are a great writer! Lets see if this posts. Hope you can get to sleep tonight again.
LauraRose
Wow, things are different in the academic hospital world. In the normal world, I usually get comments like "I didn't see the doctor once!" Oh, well, be careful what you wish for, right? Sounds like you are getting top flight care, even though it must seem like a pain in the tuchus. I predict the end in sight, and then you can suction in peace and quiet of your own home. I don't know how you've held out this long, without going bonkers. You may be bonkers already, I don't know, I'll ask Kelly. Love and good vibes from the OK contingent, praying for a quick end to your sentence. Hang in there!
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