Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
At this time, I am not aware of how much or little my body is functioning. The reality is it is more on the little than much side… I could not move the left side of my body: leg, arm, face, fingers, toes, etc. I cannot feel touch, and I don’t remember if I am responding to pain at this time yet. I’ll get to that portion later. Just keep in mind through this post that I don’t realize what I can/cannot do.
The next event I remember is getting the feeding tube put in. It is so weird to think about because I think I was awake, eyes open, but it is a hazy memory. Hazy in how things looked and hazy in the actual events.
My side of the story:
I am sitting up in my bed. My mom is with me. We are in a clinic of sorts. There are a lot of people milling around, and I think they are all getting medical care. I am in a big open room.
The doctor comes to me and says we are putting a feeding tube in so that the nourishment can jump start the healing process.
I’m a little confused as I think I have just woken up from surgery. This would mean I ate about 24 hours ago.
Why don’t they just feed me?
The doctor asks my mom if she will get woozy watching this. She says no (my mom is a trooper!). I think she is holding my hand. The doctor tells me to relax and he begins putting the tube in.
Have you ever had a feeding tube put in through your nose?
I couldn’t relax. I tried to breath and swallow when they told me to, but it was so uncomfortable and painful at times. Somehow there was water in the beginning of the tube, and water going in your nose just isn’t right. I mean, you’re supposed to plug your nose when you jump in the water right? It hurts when water goes in your nose. It’s just not natural.
It took several attempts, but the crazy doc finally got it in.
Whew! Relax again, more sleep…
While the description is accurate between the doctor and me, this all took place in my room in ICU. I don’t think anyone was there but my mom and the doc.
This is just the beginning of the hallucinations! More to come!
Sometime later, I woke up to a portable x-ray machine in my room. They needed to make sure the feeding tube was in my stomach and not my lungs or something.
It is in the right spot. Whew, again! I did not want to go through that again!
Confusion About the Feeding Tube
Sometime in my drowsy state, I hear someone say that the formula for the tubes comes at 4 o’clock. My mind starts to race.
How do I eat? How will I swallow? What if I choke?
I clearly did not understand how this feeding tube business worked!
Dan is sitting in my room at all times, 24/7 (I don’t think he has slept much since the surgery). I somehow think it is near 4 o’clock. Immense concern about this whole feeding routine comes over me.
I decide I must figure out how to eat. So I start to spell words out in sign language. One tiny problem, I don’t remember all the letters and Dan doesn’t know any of them.
Dan figures out that I’m trying to tell him something, and he goes for the nurse. All the nurses are trained to know basic sign language. They can’t figure out what I’m trying to say either. Of course, I don’t try to sign “eat” or something basic like that. I try to spell out the whole sentence, “how do I eat?” Only problem is I can’t figure out “h.”
The nurses bring in some signs that have the alphabet on one side and basic functions on the other (roll over, nurse, light, turn on TV, etc.). So Dan goes through one by one to try to figure out what I need.
They are frustrated, and I am frustrated. I decide to give up and ask them to roll me over. Back to sleep…
Note: I’m positive now that the feeding tube was working the whole time I was trying to figure out how to eat. What a loon!
Next: My AVM Story – Part 18