I know many people already know about all of my g-tube pains, but I still wanted to blog about it for journaling purposes. This is very long…I tried to keep it short, but just couldn’t seem to do it. If you really don’t want to read this, I really do completely understand! Hope you enjoy the story! :o)
April 6th- get the peg-tube placed and start night feedings the next day (all of this is in an earlier post)
Week of May 10th- get the go ahead from Perry that I can convert my peg-tube to the smaller g-tube “button”. I have officially gained 8 lbs in 5 weeks and was up 10 lbs from my lightest weight this year!
Fri. 5/21- go to St. Al’s and get the g-tube button. Dr. R. Gibson (who put in the pet-tube originally) was stuck at the office, so Dr. Goulet (also from the Digestive Heath Clinic) did the procedure. I was given the Cook’s Medical Passport Low Profile Gastronomy Device button (see picture below). That night we try to hook up to my button for my “4th meal” and it doesn’t go in all the way and just leaks. We decide to just skip the feeding for the night and try again during the day the next day.
Sat-Sun 5/22-23-try everything we could think of to get the connection to work. It still leaks and pops out when I cough, so I sit and babysit the connection during the day so that I can still get in all the calories that I need. We learned that there really is a reason they tell you to run the formula in over 4 or more hours….we did 1 hr and then 2 ½ hrs and I was so full and VERY sick to my stomach for a while after that (especially with the 1 hr. feeding…not doing that again!!!)
Mon. 5/24- had an appt. to get my IV port flushed for the month at my IV home health agency. After flushing my port my nurse took a look at my button and he couldn’t get it to work w/out leaking (and he had 25+ yrs working with feeding tubes…). We determined that I needed to call the GI Dr back and complain to them. I spent over an hour and was back and forth on the phone between the dr. office and the hospital trying to figure out what we should do. We, FINALLY, decided to squeeze me into the schedule first thing in the morning to have it looked at.
Tue. 5/25- Go to St. Als to have my button looked at. The nurse and I looked at another button (same brand as mine) to see how the connection was suppose to look when inserted fully and found out that indeed my connections were only going in half-way. The nurse and I tried several times and could not get the connection to go in. Then Dr. Goulet came in and tried. It took tremendous effort for him to get the connection into the button, but he got it, and again tremendous effort to get it disconnected (I thought he was going to pull the button right out of my stomach because he was pushing/pulling so hard!) He told me that I just needed to keep working with it and that it would loosen the inside and then go in easier after “breaking it in”. He pushed and pulled the connection into the button several times. Before I left the hospital I could get the connection in but couldn't get it out. The Dr. also told me that I should try and use Pam spray to help it go in. He also suggested that since I couldn’t get it out myself to have Curtis pull it out when my feeding was done before he left for work and to maybe just use pliers! Ummmm, can't I just have a button that works easily??? Isn't that the point? That night Curtis and I were able to get the connection to work with the small connection instead of the tube connection that we had been using. I could get it in and out myself (with some effort), so we left it at that….at least it was working. Oh, when I saw Dr. Goulet I asked him about how far the button was sticking out and if that was good. (Just so you know the length of the tube was 2.4 cm and it’s suppose to sit flat against my skin) I asked because it was sticking out about 0.4 cm and his response was that if I gained 5 more lbs then it would fit snuggly. We were not charged for this visit (thank heavens!)
Sun. 5/30-I realized that my button was sitting at an angle on my stomach and sticking out a little more than it had been originally. I tried pushing it in and taping it down (to see if that would help “push” it back into the original position), but that hurt.
Tues. 6/1- I went to CF clinic and (thankfully) Dr. Thompson (my CF & GI doc) was there and he saw me. (I know your thinking, “why didn’t you just see him to begin with?” I would have but I only have permission from my insurance to see him at CF clinic). One look at my button and he started talking about how bad it was. It was sticking out about 0.9 cm and the site was starting to look irritated. He said the button was way too big for me and he didn't understand how it was possibly working for me. Dr. Thompson tried to push the button in and it hurt. He asked why they used that brand of button (because he had never seen it before) and I told him about how I was told that was all that St. Al’s had. I recalled how I asked about other button brands and they shot me down and said I had to go with the one they had. Dr. Thompson gave us a website to look at for other buttons that would work a lot better than the one I had (especially ones that could with stand all of my coughing and would still stay in). I told him all about my encounters with Dr. Goulet the previous week. Dr. Thompson told me that I should insist on working with Dr. Rob Gibson because he is who put in the peg-tube and he has a good relationship with Dr. Thompson. He said I was to tell him what brand I would prefer to use and if Dr. Gibson said he couldn't get it to have him give him a call. Unfortunately, Dr. Thompson said that in order for insurance to pay for a button replacement so soon, it would have to be broken and not working. So he told me to sit there and put the connection in and out hundreds of times and that it would break eventually. Ok, that was good. I felt so much better knowing that my doctor thought that what I had was not going to work and he validated all of my feelings.
Wed. 6/2- My g-tube site is really starting to hurt. It felt like I had just gotten it put in all over again. By that night it hurt to sit, stand, cough etc. and my site is definitely red and looks infected and is bleeding some around the site. I started putting the antibiotic cream on it that I had from when my site was first starting to get infected several weeks earlier.
Thurs. 6/3-I woke up early because of pain. My button was sticking out a lot and I was very afraid that it's just going to fall out. I measured it and it was out 1.5 cm, and since it's only 2.4 cm....well, that's just not good. As soon as the Dr. R. Gibson’s office was open, I called the nurse to tell her what was going on. Of course, the Dr. was out of the office that day and was booked the next day. The nurse told me to go to the hospital and see whoever is over there but I didn’t want to do that because I insisted on seeing Dr. Gibson (I really didn’t want to chance seeing Dr. Goulet again). So, she was going to try her best to squeeze me in. After that I called my CF nurse, Mary to complain and to see if I could get Dr. Thompson’s number to talk to him and funny enough Dr. Thompson was standing there talking in her office, so I got to talk to him and tell him what was going on. He has Dr. Sam Gibson (the brother of the my original GI Dr.) on his speed dial, so he immediately gave him a call to tell him what is going on. Dr. Sam Gibson was the doctor at the hospital that day and they agreed to work me in that day. I felt a lot better knowing that Dr. Thompson was on my side and that something was going to get done. Of course after that I was back and forth on the phone with the hospital and the GI Dr’s office for the next hour or so. It was finally determined that the hospital was going to get another button brand there, but the button rep wouldn’t be there until the next morning with the new button. So if I went in the same day they would have just put in a smaller tube and then I would have to come back the next day to have that tube pulled and the new button put in. I opted to wait until the next day because then I would only have had to do that whole thing once. (I also didn’t want to run the risk of insurance not paying for it.) I was scheduled to see Dr. Rob Gibson right after lunch Friday and was reassured that he would get a full report of what was going on before we did anything. I was also told there was a chance that he might not be there during my scheduled appt. with him because he was also scheduled to be at the office. They reassured me that Dr. Goulet would not be there and that Dr. Tanabe would be and that he is just as good as Dr. Gibson. (So what’s the point of making an appt. with the one Dr., when they know very well there is a 95% chance that I won’t see him????) Seriously I almost didn’t care at this point who took care of me....I just wanted a functioning button that connects correctly, sits flatter, and I wanted to be fee from the horrible pain! I did not do a night feeding because I was afraid the button would be pulled out in the middle of the night because of the pressure of coughing and also from the pull that the tubing was putting on it.
Fri. 6/6-Curtis decided to work a ½ day so that he could take me to my appt. Of course, because of scheduling problems (and the hospital trying to get me in as “fast” as they could) I did not get to see Dr. Gibson. I ended up seeing Dr. Tanabe, who did get a full report from both Dr. Gibson’s and the hospital nurses about what was going on with me. After waiting for an hour, Dr. Tanabe finally came in and took one look at my stomach and had the same reaction that Dr. Thompson had. He had never seen the button that I had and asked why they had even used it and wanted to know why it looked so bad. Dr. Tanabe was all for changing the button but was worried that it had come out of my stomach, thus potentially closing part of the tract. So he wanted to scope me to see if it was still in my stomach and then he wanted to watch himself pull it out and put the new one in. I was all for it since I had also wondered if it had come too far out. So I ended up having to be sedated & scoped...good thing Curtis was with me. When Dr. Tanabe looked in my stomach he couldn’t find a hole. When he pushed on the button he could see where it was suppose to be, but sure enough my stomach hole had closed. The button was literally sitting between my stomach and my skin…barley hanging on. On top of all of this, I had a screaming red infection, so Dr. Tanabe really had no choice but to pull out the button. He didn’t want to put in a new peg-tube right then until after I healed. After waking up from that, he put me on an oral antibiotic to help with the infection, and told me to call the next week to check in with Dr. Gibson about starting the process all over again. It was bitter-sweet for me….I wasn’t looking forward to starting everything all over again, but I was VERY MUCH looking forward to feeling better! (I had my button for exactly 2 weeks)
Week of 6/9-I started to feel a lot better. My site only leaked for a day and then was completely closed and healed a couple of days after that. (It would have been sooner but it all goes back to my really hard whole body cough that I have all the time…) I wanted to get my CF Dr’s opinion about what we should do and sure enough everyone was gone for the week. (Dr. Brown is gone on sabbatical for 3 months in South America, Dr. Thompson is on vacation, and Dr. Rulon was super busy trying to change from her normal office schedule to taking over for Dr. Brown’s schedule and they had her completely overbooked.) I did call Dr. Gibson’s office but we all agreed that I should wait and see what my CF Dr. suggested.
Tues. 6/15-I went back to CF clinic (mostly for regular CF stuff) and saw Dr. Thompson again. He hadn’t yet heard what had finally ended up happening to me, so he enjoyed listening to my story. He felt bad for me and told me what I should do for the “next go-round”. He also stated that he thought that it was all Dr. Goulet’s fault for putting in a bad button and causing the button to come out when he had pushed and pulled on it so much at the beginning….I don’t blame everything on the Dr. because I think that my hard whole body cough didn’t help and all and actually helped to push the button out. We reviewed the different kind of g-tube buttons that there are and how they really do make them to stay in your body. Obviously they can be easily pulled, but they are made to withstand my hard full-body cough (when you have the right size of button in) and some other tugs and pulls that normally happen when you are connected to something via tubing. We decided that it was my call for when I start the process over again. I had lost 2 lbs since I had the button pulled, but as long as I didn’t lose any more then I could wait a month or so.
My decision: I wanted to wait until after our vacation to Seattle and after Curtis finished scout camp before I had the peg-tube placed again. This is mostly because I know what kind of pain I will be in and how long I will be down and I wanted to enjoy my vacation free of pain and didn’t want to have Curtis gone for a week as I was trying to recover. This time around I am demanding that I only work with Dr. Rob Gibson for the peg-tube placement and when we convert to a button. I finally have my surgery/procedure date set for July 29th with Dr. Gibson for sure doing the procedure. When I get the peg-tube I’m getting the info about the exact size that I need for a button so that I can order the one I want from my home health agency and then I can bring it into my appt. when we change it out. I now know what kind of pain to expect, what an infection looks like and feels like, and I know how the whole tube is suppose to function. I will be making sure that I can get the connection to work by myself BEFORE I leave the hospital. I have steroid cream to put on my site that I got the first time around (around week 3-4) that helped the granulation tissue to heal because my coughing was making it take a lot longer than it normally would have, and I’m going to start using it w/in the first week (or as soon as my CF Dr tells me that I can). And finally, even though it will drive me crazy, I’m waiting the full 10 weeks before I have them change out the pet-tube to a button to make absolutely sure that my site is healed and well “developed” so that we shouldn’t have problems after we switch to the button.
And now you know the rest of the story. :o)
Here is all of the oxygen equipment we had to take. L-small oxygen concentrator to use in our hotel room. Middle-my normal portable tank that I fill up and carry around when I leave the house. R-the liquid oxygen tank that we took to fill up the "small" tank so that I could walk around the city and see the sights.
The "kids" all seat-belted into the car and ready to drive to Seattle.
Our really nice and spacious hotel room. It also had a closet, refrigerator and microwave.
The famous Space Needle
Smile!
what a view!
This was a pretty cool display at the Experience Music Project Museum
Watching the Cubs warm up for the game
getting the field ready
All ready for the game! 
Apolo Anton Ono threw the first pitch of the game
Randy Wells was the starting pitcher for the Cubs
2nd inning: Tyler Colvin hits a Home Run for the Cubs!!!!
Apolo Anton Ono threw the first pitch of the game
Randy Wells was the starting pitcher for the Cubs
2nd inning: Tyler Colvin hits a Home Run for the Cubs!!!!
Unfortunately this was the only time that the Cubs were ahead during the game. The Mariners won 8-1. Despite Curtis' frustration during the game that his team wasn't doing so well, we were both able to enjoy the game. The pitcher for the Mariners that night is one of the top 5 pitchers in the nation. Just to give you an idea, he threw over 100 pitches for the night and about 80% of them were strikes! Every time Curtis has gone to watch a Cubs game they have lost and the very next day they win, and this time was no different...if Curtis goes to enough of their games, "statistically speaking, they should win at some point". (that is quoted directly from Curtis...)
Our view of the field! 
Unfortunately this was the only time that the Cubs were ahead during the game. The Mariners won 8-1. Despite Curtis' frustration during the game that his team wasn't doing so well, we were both able to enjoy the game. The pitcher for the Mariners that night is one of the top 5 pitchers in the nation. Just to give you an idea, he threw over 100 pitches for the night and about 80% of them were strikes! Every time Curtis has gone to watch a Cubs game they have lost and the very next day they win, and this time was no different...if Curtis goes to enough of their games, "statistically speaking, they should win at some point". (that is quoted directly from Curtis...)
Our view of the field! 
