New peg and bipap

[BarryG]

Well I am finally back in my comfy recliner after a two day trip to the "city" (as the locals call Edmonton as if it were the only city) with son Andrew because Beth had our new summer employee starting that day so could not accompany me. We had a 10 am appointment at the University of Alberta Hospital for a peg tube replacement so we left home at 6 am as it is a three hour drive. We arrived at the day surgery at about 9:45 and were shown into a room and waited and waited and waited until 12 when the gastro doc showed up. He talked to me for a bit, had a look at my existing peg and said that he was ok with changing it out. He then asked me how tough I felt because he could give me a local anesthetic but that the needle would likely hurt just as much as the procedure. I said lets just do it and he said ok.

I asked him what kind of replacement tube I would be getting and he said that it would be the same as what I had but with an inflatable balloon for easy replacement. When I mentioned the button kind he said that he would prefer to not put a button in at this time because they had no measurements for it and that once the old one was replaced with the balloon type then the button type could be put in anytime. I said ok I am good with that.

So there I am, on my back with the gastro doc, his intern/trainee/sidekick, and the nurse looking at my belly. He said "Are you ready?", I nodded "Yes" and then there was a sharp pain in my stomach and the old one was out and a new one in. The whole actual procedure was done in under two minutes and the pain was not too bad and was very short term. There was very little blood. As it was now about 1 pm and I had not had anything to eat or drink (all the same for me) since 11 the previous night I was getting very weak from hunger. I asked when I could use my new tube and the doctor said that he wanted to have some xrays taken to ensure proper placement first so they wheeled me off to have a chest xray and an xray of the peg area. All was good so I had a box of formula and it felt good.

Then the doctor asked me when my appointment with the home nutrition support people were so that they could explain how to care for my new peg and how to replace it myself. I said that no one had mentioned the need for this visit to me and he was shocked and told me that he was not comfortable with me going away without this information and I agreed that I wanted to know. So away he went to call to make an appointment for me.

It was about 2 pm by the time that he tried to arrange for me to meet with one of the dietitians so we waited and waited and waited and at about 3:30 he came in and said the dietitian could meet with us Tuesday morning so we went away to our room at the the outpatient residence.
Because the rooms there are very spartan and by this time we were very bored we went to see Iron Man 2 at West Edmonton Mall, a fun movie with lots of explosions and car wrecks, and then I bought Andrew dinner (I have to keep my 21 year old helper/wheel chair pusher/driver happy and well fed).

So yesterday morning we were off to meet with the dietitian at another hospital, The Royal Alexandra, and she explained all about how this new tube needs to be replaced every three months to avoid balloon failure. She explained how to do it and gave me a replacement tube, a temporary catheter tube to put in the hole if I need time to get the replacement tube ready and she made an appointment for me to come back to her for the first replacement in June when I am in the city for the ALS walk. She told me that the new tube that I had was made by Bard and it was much stiffer than my old tube and was also stiffer than the replacement ones that she would give me which are made by Kimberly Clark (Mic Gastronomy tube). So then we went for lunch and to yet another hospital, The Miseracordia, for my afternoon sleep study.

I got to the hospital, found the respiratory technician, Sonya, got changed into my jammies and climbed into bed. She hooked me up to the bipap with a nose and mouth mask, a finger tip monitor thingy, and a monitor thing stuck to my chest. She started the bipap and dimmed the lights and told me to try to sleep. I am laying there thinking "This is ok, weird but ok" and almost having a nice dream when Sonya says "Barry, I need to draw some blood for your oxygen and carbon dioxide levels", I said "Mmmm" and tried to go back to my dream when there was a sharp jab in my right wrist, of course as I have no blood she couldn't get any with the first jab and had to do another jab. So much for sleeping during my sleep study. I did get back to sleep and after about two hours of semi snoozing I was done and we headed home with my new loaner Bipap.

We got home at about 7:30 last night and I went right to bed and wore the bipap until I woke up at 12:30 and took it off because I was uncomfortable and slept through till 7:30 this morning. I guess it will take some getting used to, it doesn't feel like it is inflating my lungs, it really feels like it is just inflating my cheeks. What really bothers me is I cant wear my glasses and so I cant do anything other than sleep with it on.

Anyway, I'm glad to be home and glad to be back here with my friends, I've had enough fun for this week.

Barry

 

[sadiemae]

Sounds good! So glad your doctors were so competent, after the horror stories that we so often read about! HUGS Lori

 

[dldred]

Glad you could get things taken care of with one trip to the "city". Can you explain how they consider it a sleep study if they won't let you sleep ? I would think they should call it a let's see if we can torture you while you try to sleep study. It is a bit wordy but at least people would know what to expect.

Dana

 

[BarryG]

Lori, this was the same guy who did my initial peg placement and he is really good, very thorough and explains everything well. He said that he always wants to have an xray done for the first replacement just to make sure that all is well.

I asked the dietitian about the mic-key button type peg and she showed it to me and I can see that it could be a problem for my increasingly less agile hands. I am ok with the tube I have so I have no plans to change any time soon.

 

[sadiemae]

We went to the VA for our first visit the day after Les had his tube installed, and they did an xray to make sure it was in right(since it was done at another hospital) At the VA, whatever I ask for, they will do for us. You just have to know what to ask for. That is one of the many reasons I am so thankful for this forum. HUGS Lori

 

[joelc]

Glad you are through that and safely back home! They sure put you through a lot more than they did me.

We replaced the PEG after 9 months, not 3. Every couple of months we deflate the balloon and refill it just to see how much it has lots. If it has not lost too much we don't worry about changing it.

It took me awhile to get used to the bipap and I found a way to weave my glasses through the mask. Once I got my trache this was no longer a problem, at least until I lost my hands. LOL.

 

[rose]

Barry, sweetheart, there ARE other things you can do while wearing the bipap, I can attest to that, However, reading with glasses on won't work unless you get a mask with the nasal pillows.

It sounds like you had a very full couple of days, It exhausted me just reading it!

 

[helpinhand]

Barry so glad everything went well.

 

[mare]

Barry-

Glad you are home safe & sound! You know the rest! :wink::wink::wink:

 

[BarryG]

Ok Rose, you have my imagination running wild about those "other things". I am imagining checkers, rug hooking, computer repair....:grin::grin:

I am still not 100% sold on the whole "breathe for me machine" thing yet as I find that I am fixating on breathing more than I am on sleeping. I did actually sleep with it on last night so I will get used to it.

 

[joelc]

It definitely takes awhile to get used to giving up your natural tendency to breathe and let the machine do it for you.

I did not have nasal pillows, I had a face mask but still was able to weave my glasses through and read.

 

[JeffP]

wow barry it sounds like they put you threw the ringer i bet your glad to be home take care of yourself friend

 

[peter57]

Barry, glad you are back and fighting fit.
looks like you have a great team there for you

As i work for Kimbery Clark, I will see my boss and tell him to make softer tubes if it is an issue, although as i work in the paper sector i guess what he will sugest is to use a toilet roll core for a tube, might not go the distance but you could fit many things down it like whole hotdogs etc.:lol: :lol: :lol:


cheers
Peter

 

[BarryG]

Peter, I am sitting here trying hard not to spill formula all over the place but it is hard to hold the syringe when I am laughing so hard. Thanks, I needed that! I want a peg tube that uses a bathtub stopper for a cap so the toilet role would be just about right.

 

[abbas child]

Barry, I have a picture in mind of your--what--two inch diameter tube being shot hard with the syringe, and the hot dog just bolting on up and snarfing out. So, this it the goal? It would be "fast digestion".

I'm really glad your new peg went so smoothly, and with all the bipap users hope yours will work soon with your glasses. Rose or I could hook you a cap with holders for your glasses' ear pieces. Very stylish, lol. But nice and warm for your loooong winters.