Monday, September 26, 2011

How to ... / Wie man ...

... put Creon down your tube / Kreon sondiert

When it was decided that I needed to put Creon (pancreatic enzyme supplements) down my tube, I researched the internet forever to find good guidelines on how to best do that. Creon comes in tiny micro pellets that are horribly static and can't be dissolved in water. Just putting it in a syringe with a small amount of water does not work at all. It took me a while to find out the best way and I want to share my experiences.

Hier meine persönliche Erfahrungen, wie man am besten Kreon sondiert. Kreon ist ziemlich statisch und lässt sich in Wasser nicht auflösen (bzw. soll es ja, wenn man in den Magen sondiert, nicht aufgelöst werden) - einfach in eine Spritze mit Wasser und rein in die Sonde, geht überhaupt nicht, denn das Wasser geht durch, während die Mikropellets einfach in der Spritze bleiben.

I have a Freka PEG FR15 with a luer lock adapter as a J-tube, therefore I have to attach a funnel adapter. As to the Creon - I have tried different strengths and have found that Creon 10.000 - it has the smallest size of micro pellets of all the different Creon strengths availabel - works best.

Ich habe eine Freka PEG CH15 mit einem Luer Lock Adapter als Jejunalsonde. Um Kreon sondieren zu können, schraube ich immer einen Trichteradapter auf die Sonde. Ich habe verschiedene Kreon-Stärken ausprobiert und Kreon 10.000 funktioniert am besten, weil es die kleinsten Mikropellets hat und eine Kapsel auch genau die Dosis ist, die super in den Trichter-Adapter passt. Gibt man zu viel Kreon in den Trichter-Adapter, dann passt die Spritze nicht mehr gut drauf.

This is my feeding tube with the funnel adapter attached.
 Das ist also meine Sonde inklusive Trichter-Adapter.

Flush the tube with warm water first.
Zuerst die Sonde mit etwas warmen Wasser spülen.

Then hold up the Creon capsule with the red cap on top and gently screw off the red cap.
Dann die Kreon-Kapsel mit dem roten Ende nach oben halten und vorsichtig das rote Ende herunterschrauben.
Empty the Creon capsule into the funnel adapter.
Die Kreon Kapsel vorsichtig in den Trichter-Adapter entleeren.

The Creon micropellets are very static and like to stick to the plastic of the funnel adapter. Therefore you have to gently massage the funnel adapter between your finger tips while at the same time putting water down the tube. This is the most important step. If you don't massage the funnel adapter, the micropellets will not be flushed through.
Die Mikro-Pellets sind sehr statisch und haften gerne am Plastik des Trichter-Adapters an, daher 
muss man den Trichter-Adapter vorsichtig zwischen den Fingern massieren, während man mit Wasser nachspült. Das ist der wichtigste Schritt!!! Die Mikropellets sind so statisch, dass sie einfach im Trichter-Adapter hängen bleiben, wenn man den Adapter nicht gleichzeitig zwischen den Fingern massiert.

My tube has a slight bend and narrowing when fixated with the external fixation device. Sometimes the micro pellets can't be flushed through (no matter how much water you use), if I keep my tube straight like in the above picture, the micro pellets will not get stuck.
Meine Sonde hat einen kleinen Knick und eine Verengung, wenn sie mit der externen Halteplatte fixiert ist. Die Mikropellets bleiben oft dann genau dort stecken und können nicht weiter gespült werden. Mittlerweile weiß ich jedoch, dass ich meine Sonde ganz gerade halten muss, wenn ich nachspüle, dann funktioniert es bestens.

Clinical psychologist and health psychologist

I have finally completed the first part of my post-grad-education, and I am now officially able to call myself "Clinical psychologist" and "Health psychologist". Yeah!!!!
I am very proud of myself!

And because I love to study, I have already started my next post-grad-degree - Clinical neuropsychology. I had my first two courses this past weekend. 16 hours done, 132 hours to go :-).

Most of my classes are in Innsbruck (five hours from Vienna), I am very lucky that M's parents live only 20 minutes away and I can stay at their place. (And get a ride from my mother in law in the mornings...). Makes it a lot easier (and cheaper for me). This weekend I learned about aphasia, very theoretical, but very interesting. Next up - Parkinson Disease on Oct. 14th :-).
I love neuropsychology!

Sunday, September 18, 2011

I realized this morning that I haven't posted in a couple weeks now. That's what happens when I am back to work :-).

My stoma is looking really good, almost no leakage. I was having some troubles with granulation tissue coming up, but thanks to St. John's wart oil and my trusty ZCR cream it's going down already. Talked to my enterostomy nurse as well and she recommended keeping the tube more secured, too much movement facilitates granulation.

I am completely pain free, and have been able to use my scooter again for commuting. M and I also went to the gym last Sunday for the very first time in two months (took time off due to being physically very active during our move). Had no problems there either, I was even able to do abdominal exercises.

Work is very exciting at the moment. My boss organized that I can work on our surgery wards with the psychologists there for four weeks. I have already completed two weeks - it's very interesting, I am getting lot's of experience, but it's really strenous as well. So many so very sick patients.... and quite often with a very dire prognosis.

And the most exciting thing of this week - my best friend gave birth to her third child - a baby girl on Friday. Little Lina was in quite a hurry - she was born in the ambulance :-). I got to visit my friend at the hospital Friday afternoon and take a peek at Lina. What a beautiful little baby-girl!

Saturday, September 3, 2011

I am definitely feeling better painwise, but I realized in the past few days that healing is not just about physical pain. The past few weeks have been extremely stressful for me. I had a tube that was constantly on the verge of clogging up, while at the same time knowing that I could not call Dr. H. for a tube re-placement and could not get in any earlier than the 25th of August with Prof. P. On top of that I knew that there was a real chance that the PEJ tube would not work out again, something that I tried not even putting one thought into it. Having a PEJ tube means so much to me. This tube can last up to 5 years (or longer), it won't clog up if I care for it well, and it can't move back up into my stomach. I can travel without worrying what to do if my tube happened to get clogged in some foreign country. I can get pregnant without having to worry about possibly needing anesthesia for a tube change in early pregnancy.

I want to blog more about my tube placement last Thursday because I want to be able to look back at this post in a few years and remember how relieved I felt afterwards.

So I arrived bright and early at the hospital last Thursday, I had just sat down to wait for the admitting doctor when my dietician walked onto the ward to talk to my admitting doctor. I hadn't seen her since April, and she was very excited to see how well I looked. Now that I am finally absorbing my protein (at least most of the time), I am not retaining water anymore, and I really do look different - healthier :-). We both thought that I would probably have to wait quite some time (I had no specific time for my surgery, just the date and that I was going to get called down when they were ready for me), so we said that she was going to come by later to do a body impedance analysis on me. But I got already called down at 9.30. Up until that time I had no idea if this GI doc was really willing to try out another PEJ-tube with me. I had never met him before, but my dietician had written him an email two weeks prior telling him about me, also informing him that Dr. H. (who used to work for him before he left the hospital to become chief of gastroenterolgy at a different hospital) had tried unsuccessfully putting a direct j-tube in last December. I was very, very nervous when I was wheeled down to interventional endoscopy. At first one of the other docs on duty came up to me and said "so we are going to place a J-line through your G-tube today", I immediately freaked, but then one of the nurses walked by and said "oh no, we are doing a direct PEJ-tube because Dr. H. couldn't place it" - she said that with a real smirk on her face. That's when I knew that my dietician's strategy was going to pay off, Prof. P simply had to try putting in that j-tube and succeed in something that Dr. H. was not able to do.
Prof. P. came by too and talked to me briefly, I told him how important the direct J-tube is to me - how I am a newlywed (well not as new anymore :-)), wanting to be more independent, wanting to have a tube that would not clog up that easily. He definitely agreed on that :-).

I voiced my concerns again in regards to sedation with his assisting doctor, who very kindly told me "people always sleep well with a surgeon around". I was very surprised and asked him what a surgeon did in GI endoscopy - he told me that he during his residency he has to do a year of  training in a different specialty. He told me he was always responsible for anesthesia down here and he would take really good care of me. For some reason hearing that he was actually a surgical resident made me feel more relaxed. He then kept reassuring me that Prof. P. was the best down here and that's the last thing I remember before I fell asleep. When I woke up I felt pain, and I knew it must have worked, being still quite whoozy from the anesthetics I kept asking "did it work"? The very kind surgeon was still at my side and he just said "of course it did". I started to feel really nauseated and in lots of pain, so they hooked me up to some pain meds and zofran, and I remember I told the surgeon to please thank Prof. P. for me.

I can't quite recollect being taken back up, but I remember lying in my room whimpering and being in pain, getting another IV with pain meds and then it started to kick in. It had really worked!!!! All my fears and worries - gone! I sent off text messages to M an my family. And then my dietician walked in and she did the cutest "happy dance" when she saw that I was the proud owner of a brandnew j-tube :-). She told me the next day how she is a very spiritual person and that she prays every morning, on that morning she had prayed for me - really, really touched me to hear that :-).

Oh the irony!

I am feeling (slightly) frustrated with my feeding pumps right now. M picked up two newly serviced pumps for me on Friday. One is so noisy that there is so no way I can wear it at work, all my patients would pick up on it, something I want to avoid. And the other one, well, what can I say, its battery died on me today too :-(!!!! At least I was at home when it happened. What makes it really hard for me is that I can't do anything about it on the weekend. And I will have to bring a second pump to work on Monday, since neither of the two pumps I have will last the entire 12 hours that I am out of the house..... can't wait for Monday to work out a good solution. Praying that Mrs. P. (who is my contact person for replacement pumps) will also understand that I need a replacement for the very noisy pump too....

Other than that I had a wonderful day with M. Got up early (as always), went to Ikea and got some deco for the apartment, ordered curtains at Betten Reiter (and almost fainted when I found out how much those curtains were going to cost us...), and got some special high-cal food for Laura (my old kitty who is starting to look very skinny again). I also wanted to do some cleaning, but my tube has started to hurt (first day off pain meds). Got sent to bed by my darling husband :-) to rest instead.

Friday, September 2, 2011

It's been a week and a day since my surgery, and I am very pleased with my progress. I have minimal pain when walking, starting to lose that "pregnant belly look", and am definitely feeling more like myself again.
I had some problems in the beginning with leakage, talked to my stoma nurse, and she advised me to start using ZCR-cream (a barrier cream) around the stoma right away to prevent irritations to the skin from the leakage. She also told me to start with Medihoney Antibacterial Honey and carefully dab it into the stoma tract using a Q-tip. It's been 48 hours with the Medihoney, and my stoma tract and stoma site is looking so much better, the leakage has significantly decreased and the stoma tract is tightening up. I have always been a big fan of Medihoney, but I did not expect to see changes that soon. It also makes me feel good because I know it will keep my stoma infection free - especially since I am working around so many nasty bugs and germs as long as it is still healing and bleeding every once in a while.

Had a bit of a pump drama last night. For some odd reason the motor of my pump started to misbehave last night when I wanted to hook back up after having my shower. The pump was really noisy, and you could hear that something was not right. Well, I thought, no problem, that's why I have a spare pump at home - fully charged and ready to go. This morning I felt ready to go back to work, was actually really looking forward to it. Arrived at the hospital bright and early at 7.30, chatted with my boss and our psychology student intern, did some reading and was ready to get my first patient when my pump started alarming at 9.45. But it wasn't its usual "there is a kink in the line somewhere" alarm, no it was the dreaded "low battery" alarm instead. I could not believe it! Usually a full charge gets me through more than 24 hours. I don't do well off my pump, and I knew that I definitely could not work until 4, then commute back home and go therefore go without my feedings until 6. My boss was very kind about it and told me to go home, thankfully it was a really slow day.

By 12.30 I was hooked up again, re-charging my pump, and because I had to stay connected to power for at least an hour I had the perfect excuse to have a nice early afternoon nap with the kitties :-).

M already got me two new replacement pumps. This time around though I will try out both pumps and see how long a full charge lasts me. Don't want to have a repeat of today again :-).