SQUIRT GUN!!!

Almost forgot to share this…

I have to flush water thru the j-tube (feeding tube) before and after I hook up to pump.  Sometimes the water doesn’t go in very easily and I have had to use a little more pressure to get it started.  I’ve learned that too much pressure can result in a separation from the flusher with the tube and an explosion of water results (ie:  I get soaking wet).

This drenching experience gave me an idea (wicked grin).

Yep!  The tube flusher that I use makes a most excellent squirt gun!  I can shoot a solid stream of water almost 20 feet with great accuracy.

The boys and I have had a few outrageous water fights.

Life with Feeding Tube (j-tube)

I wanted to give it a little time before posting about life with a feeding tube (j-tube).  It’s been a month since I had the feeding tube inserted and I have become somewhat accustomed to the routine.  A new tube/connection devise was shown to me last week and I am waiting to find out the nitty gritty necessary to change to this tube option.  It is a very low profile option that will definitely be a positive change.  I will go from the current attachment with 12 inch hanging tube to a button attachment with no fixed tube (tube is attached only when connecting to pump)

<— current

future  —–>

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There isn’t any real difference between the j-tube and TPN (iv) as far as the routine – the pump for the j-tube is bigger/heavier and I have to be hooked up for 14.5 hours compared to the former 12 hours.  Before and after hook-up I have to flush the tube which often results in cramping but I now know what to expect so I am prepared for the cramps.

I have also become accustomed to the iv fluid therapy which involves another pump for 4 hours delivering a liter of fluids so I avoid dehydration.  The pump times overlap for 2 hours and it is a royal pain to carry around the two pumps and tubing – but I am learning to manage.

Once a week a visiting homecare nurse (I have Mary back – she’s the best!) comes over to change the PICC (iv) dressing.  While she is here, we also change the j-tube attachment devise.  This is a real challenge for me because of the mental issues I have with the tube sticking out my abdomen.  There is some “seepage” from around the tube that I have “issues” with because it is too much like pus.  The tube “tunnel” won’t heal as long as the tube is in and the seepage will be present as long as the j-tube is inserted.  Each night, I clean the tube insertion area which is minor.

My main complaint is the constant fatigue.  If I could just feel better then maybe this whole situation might not be so difficult to adjust to.  I am used to the nausea and vomiting but I just can’t get used to being so exhausted all the time.  I met with the nutrition doctor on Thursday.  My hemoglobin/iron levels remain low (could be source of fatigue) and she has referred me to a hematologist.  They are changing my formula to one with more iron and protein.  The iron deficiency has resulted in some painful tongue sores but I have some prescription medication that I “swish and spit” which has helped.  The stuff is vile and it coats the tongue and lingers way too long.  I am sure that I will need some additional iron infusions and I am impatient to get them started so I can recover some energy.

I am slowly accepting that the j-tube/iv fluids may be my “normal” for awhile.  It’s been challenging to find that acceptance because it still feels like I am giving up.  I still have hope that I will eventually be able to find someone who will be able to address the esophagus spasms so I can drink liquids again.  I know with my slow motility that eating/drinking may always be a little off but if I can consume liquids, I can at least say good-bye to the j-tube and iv fluids.  The most difficult aspect is being patient until that specialist can be identified.  Hope remains present but it is a significantly dimmer light then it used to be.

I am keeping myself occupied by crocheting ALOT.  I have signed up to exhibit my high quality winter accessories at some craft shows in October and November.  Not only does crocheting keep me occupied but I am hopeful that I will be able to generate some much needed funds.   Check out the items and please pass on the website to your contacts if possible.

Enviable Creations

I am also writing and I have a goal to finish one of my book manuscripts by the end of October.

Oh, did I mention that some of my parenting stories have been published?  A  friend just published “Mug of Woe” which includes a chapter by yours truly.  You can purchase this book through Amazon.com (I don’t get any financial benefit if you buy – but I still encourage the purchase because it is a funny book).  Link to book is Mug of Woe

Bottom line – I am doing okay.  This is still a journey and I don’t know where the road will take me but I feel like I am almost comfortable enough to try to mentally engage “cruise control”.    I have appointment with primary doc next week and will continue to challenge him to expand the medical resources available.  My tentative acceptance of my current “normal” does not mean that I will not continue to seek a better solution.

Can I just get a zipper???

The Surgery:   On Thursday, July 28th,  the surgeon opened up my abdomen to fix the “small incisional hernia” only to discover that the hernia was actually quite large (gee doc, I told you it was size of fist).   Because of extensive scar tissue and repeated abdominal surgery, this took a lot longer than anticipated.  There is also an increased risk that the hernia could return.  A zipper would be far more practical than additional cutting/stapling.

After fixing the hernia, the surgeon then inserted/attached the j-tube (and the hole for the tube to go from intestines to outside the abdominal wall) and then sewed my innards in such a way to prevent movement which could tear the intestinal walls.  Tube comes out of my abdomen about 3 inches to the left of my belly button.

He then made sure my innards were all nicely looping in smooth loops before he closed the 8 1/2 inch slash in my abdomen with 25 staples.   The j-tube is secured with an attachment identical to the image —>

Hospital Recovery:  As far as surgical recovery goes, I would say that the pain was about what I expected (perhaps even a little less – MORPHINE!).  Down side to Morphine is that it makes me itch intensely.  I remembered this and brought my bamboo back scratcher.  However, after only a couple of days, I decided that the pain was the lessor of the two evils and they removed the morphine epidural.  Pain was then managed with Norcol.

I think it was day 3 when they started the nutrition formula via the j-tube.  They started it slowly but then kept amping it up every few hours.  They wanted to go to max at 115 ml/hr.  But anything over 80 ml/hr resulted in intestinal cramping.  Even at 80 ml/hr there was cramping so my current rate is 60 ml/hr.  (This means 16 hours on the pump daily to get the required 1000 ml of nutritional formula.)  Ugh 

There was an awkward (I’m trying to view it as humorous) moment when a nurse’s assistant walked in while the nurse was flushing the feeding tube and announced that delicious looking lunch trays were being passed out and I should be receiving my tray shortly.  I said that I didn’t think bringing in a tray of food was a great idea and she was like “What’s the matter, hon?  Aren’t you hungry?  The food looks and smells wonderful today!”  My nurse escorted the assistant out of my room and must have said something because I never saw her again – and the food tray was not delivered.

Another “oops” moment came when an intern commented that he noticed I hadn’t eaten anything according to the charts and could I give him an idea of how much I ate that day.

I actually felt sorry for the resident when he told me that my urine output was low and suggested that I try to drink more fluids.  My “you have got to be kidding me look” quickly had him mentally back tracking and he had the decency to apologize for his insensitive comment.  My empathy didn’t last long when he later prescribed a liquid pain medication instead of a pill version that I could dry swallow….hello?

I realize that they all probably see countless patients in a blur of activity but you would think that the big issues (CAN’T EAT/DRINK) would stand out a little.

I found no humor with the x-ray technician who attempted to shift my position by pushing on my abdomen while telling me to move over a little to the left.  I almost decked her – would have if I wasn’t gasping for breath while screaming out in pain.

Now, before any of you start thinking I was entirely surrounded by idiots, I want to say “Kudos” to three of the nursing staff who were absolutely fantastic, professional, empathetic, and all around wonderful.  I even filled out comment cards applauding their care.

Not included was the nurse with the large holes in the elbows of her undershirt who reeked of cigarette smoke and kept violating my personal space with her overly powerful perfume that was a pathetic attempt to cover the reek of tobacco.  GAG

Going Home:  I was discharged on Tuesday afternoon (2nd of August).  Home care pharmacy delivered my tube feeding supplies and a nurse visited to help me get started setting up the tube feedings.  (I now have  new nurse and I desperately miss Mary.  Remind me to tell you about this new nurse some other time – can’t do it today without sounding really snarky.)

My days have been blurry and full of nausea while my nights have been full of vomiting bile.  Ended up so dehydrated that I needed 2 litres of fluids on Thursday the 4th at the local immediate care facility (only time I have left home since discharge).  Finally feeling a little more human today.

Currently, I am hooking up to j-tube 16 hours a day for nutritional formula and then almost 4 hours a day hooking up to iv fluids via the PICC line to stay hydrated.  20 friggen hours a day!   This is not what I was mentally prepared for….not at all.  Not sure what how long this is going to last – hopefully not that long because I don’t know if I can deal with only 4 hours of motility a day.  The iv fluids require iv pole and that means housebound.  The nutrition pump is somewhat portable but it will take a lot of adjusting if I am to go out in public with it.  Very cumbersome.

As far as the tube sticking out of my abdomen – the attachment eliminates stitches and I don’t even see where the tube enters my skin (whew).  However the long dangling tube (over 12 inches) is distressing.  The fact that the tube contraption sticks out a few inches from my skin makes it very visible under clothing is upsetting.  The staples that extend down to my belly button make wearing anything with a waistband impossible (staples come out on 10th but healing will take a bit longer).  Sweatpants and jammie bottoms are not very attractive.

So, all-in-all, it is done but not functioning as anticipated.  The nausea, bile vomit, constant hookup, blah blah blah has me irritable.  Being stuck at home has me irritable.  To be honest, I am just irritable.

Maybe in a month or so I will look back and this will all be behind me – a person should always hold on to hope (right?).

Until later – keep the positive thoughts coming.  I appreciate all the encouraging emails, texts, calls and comments.