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!
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.
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.
Hey everyone. Finally time for me to update the blog. I apologize for not updating in several days, but it’s been a very busy couple of days. Well, I’ve got some very exciting news: Holly was released from the hospital on Wednesday! Well it seemed to take most of the day, but we were finally released around 7:30 that evening. I know she was extremely happy to be out of the hospital, but we still have to stay at the guest center until Saturday but should be tomorrow. But she had an appointment with her doctor this morning, at the clinic, and everything was going well. He said that she looked very good and nice with her makeup and clothes on. But it’s definitely wonderful to have her back to a real person and not a person in a gown, or in a hospital bed for that matter. At least I get to hold her at night. That is something I definitely missed in the last two weeks. Really, but we will be catching a flight out tomorrow morning at 11:50 AM and will not be getting back into Little Rock till later in the evening. I hope everything goes well with the weather in Arkansas. Quite bad right now. They are getting a lot of snow. Well this will probably be one of my last posts in the journal for a while, as I’m sure Holly will be updating it herself. I know she will be glad to get back to her computer and braille display. I look forward to keeping you guys updated and hope I did a good job, I know I haven’t updated as frequently as she probably would have, but I do my best. I know Holly would like me to say this once again, thank everyone for all their support and prayers. It is greatly appreciated and very helpful to all of us as a family. We try to stick together is a close-knit family network, and I know that it helps Holly to know that we love there for her. Well until next time, I hope you enjoyed everything I’ve updated you on, and it has been at least somewhat understandable with this voice recognition software. It doesn’t always get everything correct that I say, but hopefully you will get the gist of it. It takes much more time to go through and edit word by word and character by character, so I figure I’ll try to leave it as it is and hopefully you’ll get the gist of it. Everyone take care, and hopefully the next update will be from Arkansas our hometown. Thanks once again. Take care.
Hey everyone, I just wanted to update the blog and let you know how Holly is doing. A couple of days ago, she was able to be removed off the IV lines and now she has to have an antibiotic. They have her on a nine to lock for. This makes it much easier for her to get around, especially when she is not hooked up tonight
Or this evening too. At least you don’t want to start out. One of the doctors came in today, and said the Holly was looking extremely well. They are going to do a study next week by taking a scope, and looking at her vocal cords to see if they are functioning any better than they were post-surgery. I’m sorry, I meant pre-surgery. I always get those mixed up. Either way, they’re going to do a study on the vocal cords, to see if they are functioning any better than they were before surgery. If they find that she is able to swallow, they are going to possibly remove the trach. This would be exciting news for Holly. I know she will be thrilled when she finds this out. We have not told her yet, because you want to make sure from our regular doctors who come during the week, that this is going to be the case. But it looks like it will be. So hopefully the study will go well. I seem to be having a little bit of trouble with my speech dictation software, it’s making a lot of mistakes. I extremely apologize for that. I don’t know if I put this before, but Holly has been able to do a lot of walking, especially since they have been able to take her off the IV lines. She has walked completely around the nurses’ station, which is quite a trek for someone whoo just came out of surgery almost 2 weeks ago. She is recovering nicely. Well that’s about all I have to say for now, but I will keep you updated as to more information. Thanks so much for all your support and hopefully you find these updates interesting.
Hey there everyone, I would like to apologize for not updating the blog in the last couple of days, but it’s been kind of busy. I’ve got some exciting news. Holly wants to update the blog herself, so I am going to dictate what she says to me from her: Hi everybody. Edward is posting this for me. I just wanted to let everyone know that I am trying to stay strong. But right now, I am scared. But code, it doesn’t look like there is an end in sight. But please keep praying, and sending positive vibes. But I think that it probably feels like there is no end in sight, because lately, she has been running a fever. They haven’t been doing a lot, because they are trying to figure out where the fever comes from. They’ve taken blood samples, culture samples, urine samples, and doing a chest x-ray. This fever started a couple of days ago, and they’ve been treating it with antibiotics. I think they finally narrowed it down to a bacteria in the blood, I can’t remember the name of it, but they are trying to figure out where it came from to begin with. The temperature has been running somewhere between 99 and 104. Hopefully, they will be able to get it all cleared up with antibiotics, soon as they can finish treating her, and we can go home. I’ll keep everyone up-to-date as much as I can. Thanks so much and hope you enjoyed that bit from Holly.
Hello All.
I wanted to let you know what a wonderfull day Holly had today.
Physical thearpy worked with her on walking, and she was able to walk about 80 feet back and forth up and down the hall.
She also got the new feeding tube, which was inserted through the stomach. I know it makes it easier to have that one versus the one in her nose.
Hey because of that tube she has now, I was able to get my first kiss in over a wwk! Yahoo!
Now back on topic, Holly also walked a second time today, and did just as well, only this second time, she used a 2-wheeled walker which she did very well on.
Today, they also downsized her trach from a size 6 to a size 4, and she is so very happy. She says, “I can clear this one out on my own, without suction.”
So, all in all she’s doning very good and hopefully will learn how to talk with her new trach tomorrow. They are going to have a speech thearpist work with her for that tomorrow.
Everyone take care and we’ll keep you up to date as much as we can.
Hello everyone, I’m just writing to tell you how Holly hass been as of earlier.
Shes been doing fairly well, she’s not too happy about the feeding tube, but I know that it makes it easier for her to eat.
The doctors aren’t sure how soon it’ll be since she is able to get out of the hospital, but I told the doctors, that I want Holly to have the absolute best care she can possibly have. I don’t care what it takes.I’m willing to do whatever we need to do for Holly girl.
I want everyone to keep up all their prayers and keep thinking about Holly.
Thanks so very much for those people that have commented thus far.
I’ll keep you up to date on any new information I find out as soon as I can.
Hello everyone, this is Holly’s husband, Edward. I just wanted to give you an update as to how she is doing, I want to thank everyone for sending all the comments we have been receiving. Everyone has been so nice to us and sending the comments they sent on the post. But I can’t thank you enough for all you guys this support. Call Holly has been doing fairly well with physical therapy, they got her up again yesterday, and she was able to take a few steps towards the wall holding someone’s hand. Unfortunately, she was not able to eat much the last couple of days, so they ended up having to do a nasal feeding tube for a while. They decided that in the long run, they were going to go ahead and put a tube again, that would go directly into the stomach. So now, she has a feeding tube through her nose, and the trach. But the doctors seem to think that she will have to have the trach not permanently, but at least long-term. That may be said for the stomach feeding tube as well. But I think the reason for the feeding tube, is because she is not able to use her swallowing muscles to swallow even puréed food. But she seems to think, that she’s not doing as well as she was in her last surgery, but I think it’s just because she’s had some extra devices that she never previously had. But the doctor came in this morning, and wanted to order an MRI of her head, to make sure that there was no more fluid on the brain. But they said that she had had some fluid on the brain prior to surgery, I believe he called it encephalitis I’m not sure. I can’t remember the actual term, either way it means fluid on the brain. But right now, she is currently in the MRI. So it would give me some time to record this post. That’s all I have for now. I will keep you up today as I find out any new information. Thanks once again for all the comments.
