This morning when I woke up, I was excited about today. I was finally going to have my g-tube removed!
I was not allowed to eat or drink anything after midnight last night. Usually, this means surgery. I had never heard of someone having surgery to have a g-tube removed, but maybe they weren’t starting to do that these days? I had no idea for sure.
I have a couple of friends with a g-tube as well. One of them explained about this balloon type thing in your stomach with water in it. This helps hold the tube in place. I believe this is the way it was explained to me.
She said to remove the tube, a syringe is connected to the tube and the water is drawn out of the balloon. If all of the water is out, the tube slides out without any pain. It was a relief to hear this. I don’t like to go through pain, and worry about how bad the pain will be until it is over. Very strange, because I can handle a lot of pain, but I will sit and worry over something like going to the dentist.
I wasn’t so lucky with my tube removal. I did not get my hope for pain-free, or even little pain. I suffered with pain, unnecessarily.
When I was called back to a room, I laid on the bed in there. The nurse took off all of the dressing and tape around the tube. Once she checked my vital signs, the doctor came in.
He told me that it would sting for about 20 seconds. Then YANKED the tube completely out.
Sure it was only five seconds at most, but my Father in heaven. It was so painful!
I couldn’t breathe for about 30 seconds. It felt like I was being gutted alive. It felt disgusting too. I could feel the water balloon fly out the little hole. It felt like someone was dragging balls through a pipe. When I say it felt like that, that is the sound the feeling made in my brain.
Edward said it really did sound like that too. Like a string on water balloons was being pulled from a drain.
No pain shot, no sedation, no anesthesia, no draining the water. Just yanked it out. I am still in a lot of pain. I came home and took a pain pill. It took some of the edge off, and I had to take another one this evening.
I can’t believe there is a pain-free way to remove these tubes, and they did it the hard way and put me through unnecessary pain. This doctor In my opinion, any doctor that puts a patient through something like that, deserves to suffer pain too. Just to know how we feel.
Last Tuesday I went for a swallow study. They have changed the test since I last had one in 2000.
Before, I only had to eat and drink while sitting between the technology so they could see my stomach. But this time, I had to drink some slightly thicker than normal liquid while standing. Then they had me lay on my side and drink. Finally, they had me lie flat on my back.
That last one posed some challenge. No matter how hard I tried, I kept choking. Well, it’s not really choking. It is what they call “aspirating”. When something goes down the wrong way, and you start coughing, you are aspirating.
They had me drink some water, since it is the t thinnest thing possible to drink. Again, I aspirated. They didn’t tell me either way how the test went. I would have to find out from my doctor when she received the report.
I left that appointment so discouraged. I knew from before that when you aspirate, you failed. Since I did ok while standing up, I had soft stuff to eat, like mashed potatoes and pudding.
I was handling soft foods well, and began trying to drink more. Everything was going well, so I didn’t see any harm in it. I knew I wasn’t aspirating as long as I was sitting straight up.
Yesterday we finally got the results of the swallow study. I passed! I just knew I had failed!
The only thing I can think of, is they changed the rules over the past ten years. Maybe they had me drink while lying flat to see if I was able to clear any fluid out of my lungs, if it went in. Since when I coughed I cleared it out, maybe that’s a good sign and means there is nothing to worry about. Either way, I passed!
Since this feeding tube is in my stomach, and not my nose, I have to have a gastrentologist remove it. We found out today that I have an appointment for that to happen Next Tuesday. One more we and I’ll be tube free! I can’t wait!
In American Sign Language, the sign for “snow” is equal to saying “white rain” in English. You take your dominant hand and place is flat on your chest. Slowly pull your hand out away from your chest, at the same time closing your hand into a circle. Then take the same hand and place it in the air about head level, and bring it down while wiggling your fingers.
The first part of the sign is “white,” and the second part is “rain.” Doing the signs together, you are saying “snow.” And oh, I am beginning to hate snow.
I am so irritated and frustrated, and it’s nobody’s fault. Mother nature can not be controlled. Because of all this bad weather places are getting, the airlines are jammed.
The Northeast region of the country is getting pounded and everything seems to be closing. It’s not just the Northeast though. Even Dallas has two feet of snow.
So Edward has been trying to call all of the airlines, and can’t get through to any of them. Continental, Southwest, Delta, and several others don’t even give a hold time. They just simply say that they are not taking any more calls.
American Airlines let him through, and the hold time was going to be three hours. He held while doing other tasks around the house. When he was finally placed through to a representative, they couldn’t hear him and the call was disconnected.
All that waiting for nothing! My appointment in L.A. is less than two weeks away. I need a flight ASAP. We could book it online, but with the airport so jammed right now, and we have no way of knowing how long they will be that way, we are afraid that we will get stuck in the layover city and miss the flight to L.A. and therefore miss the appointment.
These tickets are too expensive to book and then change because you miss an appointment. Also, we want to talk to the airline to alert them to all of the disabilities and assistance we’ll need.
I have to let them know about this feeding tube so that in security they don’t hassle me or try to yank it out. Also, we could try to get a discounted or free ticket for one person being my attendant since I am deaf-blind.
Not all airlines will do it, but I know Continental will let an attendant fly free with me for safety and communication. Sure wish we could get through to them. There is no way to get this if I book it online.
I may end up having to change my appointment date, which I really, really don’t want to do. This complete silence is killing me. My brain needs some sort of stimulation other than touch all day long. But, I may have no choice. If we are still unable to get through by this coming Wednesday, I guess I’ll have to put off the ABI activation until March, or whenever they can get me in. This stupid white rain…I hate it. It’s messing up all my plans.
I can not watch the show, which is tough on me. American Idol was one of my favorite shows since it first came on.
I have friends and family that watch it, and tell me what happened. I guess last night there was a lot of drama.
It was group week. Hope was in a group where one girl wanted to run the whole group and dictate what everyone did. Hope wasn’t having it. She wanted to voice her opinions as well. She is like me in that sense. We let people know what we think, for sure.
Two people made it through to the next round out of her group. Hope and another girl. I’m so excited! She was put through to get closer to the top!
I believe next week she’ll be on again. Everyone tune in and watch my Hopie Jo on the show to see what happens and how far she makes it.
Now that I am using a braille display full-time, and nothing else, I am getting better at operating the PC on my own again.
With speech, it was no problem In fact, everyone came to me with computer problems because I could do almost everything on a computer that didn’t require vision. When the hearing started going, so did my computer skills.
I hated braille—mainly because I am so slow at it. But using it on a daily bases, I am getting just a tad faster.
Using a braille display on the PC is harder than speech, to me. Things are arranged a little differently and it takes a second or two to go back and forth from the keyboard to the display. It just takes longer, and well, we all know I’m not that patient.
I had Edwarrd do a lot of my tasks for me on the internet because Internet Explore was just too hard. But, I’m getting better!
I’ve been posting my own blogs and doing a few Google searches. Now I’m about to start working on changing a few things on the blog. I do not need the donations anymore, so I need to make people aware that I got what I needed, and not leave this old information up there. It’s also time to push my book a little harder.
I don’t need donations, but I do need funds to help pay for travel and lodging to and from L.A. since I’ll be going back several times within the next year. I will try my hardest to sell the rest of the books I have, and use that money to do this
So things are going well. I am recovering nicely, and I’m adjusting to this deafblindness well. I am improving on my braille skills, and not freaking out quite as much over the silence. I still get a wave of anxiety sometimes, but it’s getting better. From here, I can only move forward.
Wow…I was just sitting here at my computer this morning typing an e-mail to my DB buddy in L.A. I looked down and what do I see?
My trach is hanging there by the neck band. The tube is all the way out of the hole. Oh geez, what to do now?
I tried to stick it back in, but I didn’t try very hard. I was afraid to push or touch it a lot. I went and woke Edward up. We called my mom and I said just to leave it out. I don’t want that blasted tube anyway. I was planning to have the doctor take it out Monday.
Well, we decided to go to the ER and see what they thought. They looked at me and saw that I could breathe fine on my own, even with the trach hole covered, and said that I could just leave the tube out and it would start closing on its own.
It is already starting to close, but they said it would take two months for it to heal completely. It’s that easy? Just take the tube out and let it do its thing? And to think, it was an accident that it came out on its own. Oh well, it’s more comfortable without it anyway.
Music is everywhere in my family. Seems that everyone either loves to sing and/or play music.
My niece is one who loves to sing, just like her Aunt Holly. As she got older, she got even better at it.
She decided to try out for American Idol this year. She made it to Hollywood.
Last night they showed her at Hollywood. She sang “I Hope You Dance” by Leann Womack (probably misspelled that). I wish I could have heard her. I’always loved hearing her sing. People say she did really good.
I am keeping my fingers crossed and praying that she goes far in this. This is something she loves to do and really wants out of life. I’m so proud of her for trying to follow her dreams. Way to go, Hope. Go far and pray you make it to the top.
I’m finally home! They let me out of the hospital after 16 days.
This surgery was a huge success, even if there were complications. I feel so blessed. I have an excellent team of surgeons operating on me.
There are several truly amazing things about this whole experience that definitely show me that God was at work here. Right now the one I’m thinking about is the surgeons saving my face.
I had a 5cm tumor. That is extremely large for an acoustic neuroma. It was life-threatening. It was causing me to choke on food and drinks, have no balance, falling all of the time, and making me space out. The spacey spells I was having were very scary. It would feel like I had been injected with the strongest drug out there, and I would feel like I was about to pass out. I couldn’t think, talk, focus, anything.
Now, the spacey spells are gone. I can walk using a walker, I can stand in place and sit on the side of the bed without swaying like a drunk, and I don’t lose focus anymore. I do have headaches off and on, but that is from the surgery. They aren’t near as bad as they were.
So I am home and recovering nicely. I still have a trech and a feeding tube. I am going to have my PCP get an appointment to take the trach out, I think an ENT has to do it, and order a swallow study to see if things are still going to my lungs. I think everything is fine. I know the trach can be taken out. Everyone there is safe now.
We flew home Saturday. Little Rock was very cold and the streets were slick with snow and ice. Since it was late in the evening, we had to get a hotel room for the night and try to drive home the next morning.
The long drive was even longer. My Dad had to drive very slow because the roads were so bad. I’m just glad we finally made it home safely.
We got home Sunday afternoon and as soon as we pulled into the driveway my aunt, who was watching Isaiah for me, opened my door and put him on my lap.
I gave Isaiah the world’s hugest hug. I missed him so much. My family missed him too, but at least they could call and talk to him on the phone. I had no contact at all and I would get so sad and lay in my hospital bed and cry because I just wanted to hold my baby. He signed, “I love you Momma.” Oh what precious words.
Hearing is completely gone now. It’s scary not knowing who or what is around me, if anything. At home it’s not so bad, but in the airport I nearly had a few anxiety attacks. I didn’t know if danger was around, afraid someone would try to attack or abduct me. Yes I know, I’m crazy but I am a chicken when it comes to crime. If it can happen to other people, it could happen to me as well.
It’s also very lonely and boring not being able to hear a thing when you are totally blind. There’s nothing to do to occupy your time. The only thing you have is touch. In L.A. I had two options. Talk to my parents or Edward, which can’t be done every second of the day, or read a book. I had my PAC Mate (braille note taker) and I have a digital book on it. I read it with the refreshable braille display on the note taker. Doing those two things, and praying a whole bunch, I got through those rough days in the hospital.
I want to thank everybody for their prayers, good vibes, encouragement, and support. It really helped and I could not have gotten through this without all of it. Thank you so much. I know God is watching over me. He was in the surgery and he still is here at home. Everything will be fine now, and the ABI will be a huge success because God isn’t finished with me. There is a reason I received that huge donation and was able to get the device. He wouldn’t have made that happen if it wasn’t going to work well for me. It is a miracle, and I really do feel so blessed.
Hello everyone. You must have thought this was going to be the last update I was going to put in the blog. Well you got it wrong. It’s time for a new one. Our son Isaiah was at his mother and father-in-law’s house today (that’s my mother and father-in-law’s house–he was at his grandparents house today). Holly asked me to go over there today, and asked them not to fix any supper tonight. She said she wanted to make supper herself tonight. Oh she definitely has done that and I mean done that in a good way. She was able to walk around the entire kitchen holding on to either the counter or stovetop–not the hot ones mind you, but at least the ones that she knew where not hot and was able to hold onto. The funniest thing about it was that after I got done putting the hot oven gloves away after we took the chicken out of the oven, I went back to the stove, to see if she was still there. I figured she would still be standing there waiting on the chicken to get done, but instead she wiped completely from the kitchen on the way back to her desk. Just completely away!! Anyway, I thought that was pretty interesting. I thought maybe you guys might want to know a little bit of these interesting facts.
