Saturday, March 15, 2014

Cool Stoma Bro

Just a heads up on my posts there will be poop humor.  If I can't stay light and have humor about this whole situation and path, then I'm sorry...for you.

Well it's official, I have completed my start to getting healthier!  It has been a crazy five days and so far so good. Lets go back to Tuesday the 11th.

Tuesday March 11th, 2014:  We, myself, mom, and dad, had our check in at UCSD La Jolla Thornton Hospital at 5:30am and needless to say we were all pretty tense but I was keeping my cool so that it would hopefully calm mom and dad down some.  I figured if I was tense and worried it would make them worry more than what they already were. I got my nifty hospital bracelet and we headed up to the pre-op check in.  Mom and I already knew where it was since we had been there a few times before for my colonoscopies, but that morning it was different.  Usually we had a wait before anyone even realized we were there, but not that morning.  As soon as we got up there, there was a nurse waiting there for us and she whisked me and mom to the back where I got into my {sexy} hospital gown.  Although I will say it was the kind that blew up with warm air which I truly enjoyed.  Next were the normal pre-op procedures, blood work, a million questions about medical history and medication, IV line placed, and then of course...the waiting.  Remember check in was at 5:30, but my surgery was scheduled for 7:30am, so the 3 of us had some time to kill listening to the monitors beeping and other people coming in and getting set up as well.  Along with the prep work it was meeting with the assistant to Dr. McKlemore (my surgeon),  a few residents since it is a teaching hospital, the anesthesiologists, and the assistant again, and then finally the ride into the surgery suite with the an anesthesiologist. I gave mom and dad a hug and a kiss, told them I would be fine and off I rode into the suite.  They put an oxygen mask over my nose and mouth, told me to take some deep breaths, a nurse told me they were going to put some cuffs around my legs to help with the blood flow, the anesthesiologist then told me that they were starting to give the medication and the last thing I remember saying was, "Yep, I;m starting to feel it."
The next thing I remember was waking up in the recovery room with the nurse, Anna, and a parent.  Honestly I am not sure who was there with me first because I kept dozing in and out and every time I woke up it was either mom or dad.  Anna however was always there until I was fully awake and I heard someone bringing it up that she was retiring, so I locked that away somehow.  We made sure every step along the way we asked for a private room and I'm sure as soon as they told mom and dad I was out of surgery, mom was asking again for the private room.  I would say I was fully aware of what was going on by 2pm and that's when mom told me that the surgery took only 4 hours (we were told 5-5 1/2 hours) and the doctors were extremely happy with how I looked and how the whole procedure went. We finally made it up into my private room around 6ish Tuesday night.  As Anna left me in the room I remembered to tell her congratulations on retiring and she left with a huge smile on her face.  I was also lucky enough that my son, Caleb, his mom Cindy and sister Nikki were in Del Mar and they stopped by to see how I was doing.
After dad, Caleb, Cindy, and Nikki left, mom and I got all settled in and man was mom was such a trooper!  She stayed the night with me on the little fold out chair bed they had there.  It was nothing more than springs, but of course she wasn't going to leave me alone that first night.  So there we were, 2 peas in a pod, besties, by each others sides for the first long night, no idea of what was in store for either of us, but we would do it together.

Wednesday, March 12th, 2014:  My first 24 hours with the pouch and a day full of meetings.  I have to say it feels weird.  The only way I describe it is as if you have maybe 5 layers of duct tape stuck to your stomach and you know you CANNOT take it off! If you have an itch you try your best to scratch it, but you cant really do anything about it.  The night was a rough one.  The nurse and her student was in about every 2 hours to check vitals and to give me good ol' pain medications.  I was not a patient with a PCA (patient controlled anesthesia) pump so I was dependent on them for the pain control, but luckily the pain never really got any higher than a 7 my entire stay.  Another reason they didn't have me on a pain pump was because the medications slow down the gut response and keeps them from "waking up" after surgery and in order for me to go home they needed to be awake.
The doctors showed up extremely early, like 5:30 early! It was the assistant I met in pre-op as well as some residents and another doctor. Later in the day I also met with McKlemore and she told me how happy she was with the surgery and she took a look to see how I was doing.
I also met with my case manager for my stay there who was going to get me all the home care and physical therapy I needed before I would be able to go as well as I met with the Occupational Therapists.  The OT showed me the easiest way to roll out of bed and got my up and out of bed.  The farthest we got was just to the chair, but later that day I did take a walk around the ward with a nurse and mom and then later 1 with dad.  They have an incentive chart for the patients to get up and walking.  It's nothing more than a simple white board with rows, numbers and a magnet that you get to move along as you make your laps.  26 laps and you have walked a mile AND you get to pick your choice of "destination" magnet once you have reached the "finish line".  I also {ate} for the first time since Monday's prep for surgery.  I was on a full liquid diet which ranged from some sort of broth, juice, as much water as I wanted, and sometimes jello. I also received another visit from Caleb, Cindy and Scott (highlight of the day).

Thursday March 13th, 2014: Today was another day of learning about my pouch and the wonderful way it worked.  We needed to empty it over night and I starting to notice when I would "go to the restroom".  There is no way to control it and no real way to explain how it feels.  It just feels like pressure and then a release. Now, sometimes with the release comes some noise, aka stoma farts.  These can range from the high pitched farts to the, well there is no nice way to say it but the wet farts.  Again I have no control over it and I'm apologizing in advance if I ever see you and I fart, I don't mean it :)  OK good, we have gotten that out of the way.
Now back to the day.  The nurses backed off to about every 4 hours over night and the doctors didn't come in as early (thank goodness), although mom was there at 5:30am just to make sure she heard anything they said.  She went home Wednesday night and came back in the morning for a bit.  Well the morning doctors don't really say anything much but they do like to mess with the bag and see the consistency of the output.  I tell you that so I can tell you this.  After the doctors left, I asked mom if she wanted to take a few hot laps around the ward.  Oh I was also supposed to get up and walk four times a day to keep the gut moving and to help prevent blood clots (sorry for the side track). So as I went to get out of bed, I stand up and SPLOOSH! Either the night nurse didn't close the flap all the way or the doctor tugged it a bit too much on her rounds that it opened completely up as I stood up.  All mom could say was " Ah shit!"  I mean what else can you say in a situation like that!  I started giggling and closed up the pouch and the nurses came in to clean up.  After that we went on our little 3 lap walk. Again another day of meetings, walking, poking, and laying around in bed.  By now, I was starting to get bored.  I turned off the TV and started watching Netflix, but I fell asleep 3 times while trying to watch House of Cards (so good but don't let me falling asleep deter you from checking it out).  My ostomy nurse, Cheryl, also came in and we changed my bag and she showed me the steps and some tricks on the easiest and best way to change my bag.  Yes it is something that does not get changed daily, but every 3-4 days.  You do rinse out the bag (I do at least 3-4 times a day) but you keep the wafer on 24/7.  It is waterproof so I can take showers with it on or off and they do recommend you take a shower with it off at least once a week. "So what happens if your stoma act up while you're in the shower?" rinse it off and clean the shower.  You still need to wash the skin and since you have no control, you just kind of roll with it. Rollin' without a colon ;)
I also met with the physical therapist.  I needed to meet with them to show them that I was able to walk up and down stairs since mom and dads house has them (14 exact) before I could go home, which of coursed I aced.  There was no way I was going to let anything slow me down because there was a rumor going around that I MIGHT be getting discharged on Friday. I was also bumped up to applesauce level.  I'll tell you what, that was some of the best applesauce I have had.

Friday, March 14th, 2014: Friday was a big day.  Of course because of the possibility of my going home was stuck in my head but also because I was bumped up to a low residue diet (basically adding banana and peanut butter to my meals along with the added applesauce) but it also included Malt-O-Meal!  WOOHOO!  Big timer, I know!  It was pretty much the same over night except I was pushed back to every 6 hours with the nurses and the same with the rounds, but the morning round doctor told me again that there was a really good chance I would be able to go home today. So as I had made it my morning routine, after or before the doctors, I got cleaned up and then go on my walk around the ward.  But today was different (no my bag held fine today).  When I got back, I had another try of food on my table, but it had an actual plate.  I lifted it up and on the plate was a plain egg "omelet", 1/2 an English muffin, and some potatoes!  REAL FOOD! The first real food since Sunday night family Mexican blow out! If I were to eat the omelet today I would say it was the grossest thing ever, but then, man it was so good!
Later that day, McKlemore came in and dropped some news on mom and I.  Yes I would be able to go home today, but, I would need to have PICC line inserted.  It is also known as a Peripherally Inserted Central Catheter.  It is basically a long term catheter that stop right before it enters my heart.
The doctors were afraid that I was loosing too many fluids out of my stoma and this way I would be able to give me fluids at home daily and prevent me from becoming dehydrated.  Plus in the event if I became dehydrated and did need to go to the ER, I would already have the IV placed instead of them trying to find a vein (no thank you, been admitted dehydrated before and that was no fun).  This came as a blow to me and mom.  Mom because she really did not understand all that was being said or what it all meant and as for me because I was already dealing with the bag, now I would have to deal with the line.  This was one of the few times I cried since I got news about the surgery.  I held it together while the doctor was there, but after she left I cried.  Not sobbing, just crying.  I knew it needed to be done for my health, but dang it, that's 1 more thing I have to worry about!
Around 1pm the PICC nurse came in and we had it placed in about 30 minutes.  We still had no idea if I was leaving today but in the event I didn't and still needed the PICC, they are off on the weekends, so I would have had to wait until Monday.  stay in the hospital for 3 more days, NO WAY!  The x-ray techs came in shortly after to take a chest x-ray to make sure it was not in too far and the nurse told me if you see me again, it is in too far, and if you don't, then i did my job and it's in the right place.  Well, I didn't see her again.
Then came the case worker again to finish up paperwork and to give me the news that I would be going home.  Now, she gave no time, but I would be leaving the hospital that day. Dangle that carrot in front of my a little bit closer.  A few hours later came in a home care specialist to talk to us about having the nurse come out once a week to change my dressing on the PICC line and to give us information on all of that.  I will say this about my insurance, all of my home care, ostomy and nursing care, is covered.  All I have to go is mail in a $30 check weekly for the PICC line nurse when they come out to change my dressing.
All paperwork was done and then the waiting began.  Now I have a small idea how the military feel when they know they are told they can go home on leave, but they have no time as to when they can actually leave. But my last nurse Martin came in as I was coming out of the restroom with all of my discharge paperwork...FINALLY!!!!!!!!!!!
We finally made it home around 8 last night and man it felt great to be home.

Saturday March 15,2014: Was I in a dream? Nope I was back home in my own bed and man it felt fantastic. Woke up and headed downstairs and dad made some pancakes for breakfast and it seemed like any normal Saturday morning. Then I received a phone call from the company who would be dropping off my infusion supplies around 9am.  It was honestly kind of like Christmas.  I got a big box full of supplies as well as an IV pole to hang the bag off of.  The receiver in dad came out to double check the delivery and my medical side came out helping him and the driver make sure everything was there.  Mom was out doing some grocery shopping so I started labeling the items, dressings, IV lines, Saline, Heparin, caps, and put them all into 1 box.  I wanted it to be as little as intimidating for mom when she got home because I knew this was something she was going to have a hard time with.
Around 10:45 the nurse showed up and the teaching started.  I know how to flush a line and clean things off, but mom and dad did not so I wanted this to be a teaching for them more so than for me.  I knew that if a nurse was here to go over the steps with them instead of me it would be more settling for them plus they could ask any questions they wanted.  I also wanted them to know what a good line felt like God forbid anything happens to me and I need them to give me the fluids.  Time for me to brag, they killed it!  They prepped all of the syringes, cleaned my port, and hooked me up!  Granted I did not have an extension on the PICC line yet so I needed them to do it anyways but now they know that they KNOW how to do it. Rockstar parents all the way!  So just short of 3 hours of me being on the fluids I finished up and stayed on the couch.

This whole resting thing for me is really hard and if you know me, you know it is something I will struggle with at least for a bit while I am healing internally but I will tell you, if my parents had any idea of what kind of kid they were going to get with me, they would probably of had second thoughts about the whole thing.  I have put them through so much, much more than any parent should have to go through and all while they stand right beside me with our Lord surrounding us with family and friends to help get us all through this.

I love you mom and dad!


Patty said...

You are one amazing Chica! But we already knew that. Praying for you daily. Don't forget, I'm only 2 minutes away if you ever need an old washed up, x-nurse, who probably doesn't remember much but can cheer you on.. Love you!

Lynn Durkee said...

Ronnie... only through the strength of Jesus our Lord could you possibly be going through this with such an amazing attitude. I am so happy to have you and your parents in my life. I look forward to seeing you soon. Hugs :)