I am home!!

I still feel revolting (and yes I’m aware that I look revolting too), still have pains and I still have no answers on what the hell is going on!

I have been discharged with pain relief, anti nausea and reflux medication to tide me over. I made the decision to be discharged from the public system as I was getting very frustrated with not getting anywhere, the lack of understanding for Percy and almost feeling like I wasn’t been taken seriously that these pains are both real and severe.  I have made the decision to continue investigation and follow with Lilian through the private health system, she will know and understand my situation a lot more, after all she created Percy!

I have spoken to Lilian’s rooms and I have been scheduled for an endoscopy this Thursday in the private hospital system.

I am not going to lie, I am very nervous about being home and not being able to manage my pain accordingly and having to put Lachlan through watching my acute episodes but I was so flat, miserable and uncomfortable at hospital and just wanted to be home so I made the decision and here I am, back in my world with my boys!

And just a quick tip for anyone who has a hospital visit and are lucky enough to get some flowers while you are there….spew bags double up as a great way to bring the flowers home with any escaping flowers or leaking water.

It’s been a bit of a rollercoaster of emotions today with the situation changing multiple times throughout the day and having to adjust how I felt about things at each time things changed.

The day started with the plan of me to have a swallow test today and an endoscopy tomorrow, fasting today until after my swallow test . It then changed to swallow test and endoscopy tomorrow so I could have breakfast. One mouthful of baked beans and 1/2 coffee later my breakfast was ripped away from me and a new plan of fasting for swallow today and also endoscopy today. Are you lost yet? I know I am….and this was all before 8am!

Went through my day doing the normal hospital day of waiting for something to happen having some decent naps between episodes of severe pain.

Had a lovely visit from one of my work mates and was very spoilt with some beautiful flowers! I miss all their beautiful smiling faces!

My visit got interrupted by being wheeled off for my swallow test. For the record, the barium solution that you have to drink is all sorts of revolting and somewhat resembles revolting sambucca and that is one weird sensation standing on a bed then moves you to laying down. Like some kind of bad show ride.

When I got back to the ward the nurse informed me that she would check to see what time I was going into theatre. Instead of coming back with a time she came back with a sandwich to inform me that my endoscopy wasn’t happening today and I had to fast again from midnight for my endoscopy tomorrow. Sandwich is not the best option for someone who doesn’t and can’t eat bread and who hasn’t eaten in 18 hours, so just ate the filling.

One of my doctors came back about 15 minutes later and said the nurse had it wrong and that they can’t get me scheduled for an endoscopy until mid August as it falls into the criteria of elective not trauma/emergency. She then said they have spoken to Lilian and they have both have agreed to propose for my consideration that if my swallow test comes back clear tomorrow morning that I be discharged with pain medication to managed the constant pain and acute episode. And then I see Lilian as an outpatient in her clinic on Thursday this week and organise a endoscopy through my Bariatric clinic using the private system as I will get in a lot quicker

So now Jamie and I have to make a decision if we are comfortable for me to go home with this constant pain and hope I don’t have any really bad episodes that can’t be controlled by oral analgesia and pay to access the private system to see Lilian in a more time appropriate manner.

And to make matters worse they forgot to deliver my dinner! I was fasting at lunch time and nobody on the ward told the kitchen that my fasting had been lifted. They offered me another sandwich as a replacement. I said no sorry I can’t tolerate bread and heavy carbs so instead they offered me a salad plate with pasta salad and rice salad. Respectfully declined explaining I couldn’t actually eat that either. Two hours later I finally got a chicken salad plate and some Custard which is unfortunately sitting very heavy as the chicken was a bit dry. Better than no dinner at all I guess.

So all in all it’s been one hell of a rollercoaster ride today and i am feeling all sorts of different emotions and think I really need time to process everything. I am scared about going home without an answer and not being able to manage the pain with oral pain relief but I am also excited to be able to get out of here and get back into my own comfortable surroundings with my dear little family!

Big decisions to make tomorrow if and when I get the all clear from the swallow test!

This whole experience has been so emotional and testing to my journey but I have to try and stay positive motivated and focused that while the path I am on probably wasn’t the path I planned, I just need to “recalculate” like my GPS says to help me get back on track to head towards my goal that I WILL achieve.

There is no news flash today. I am still none the wiser of what is going on with my body and these awful pains.

I do however know that there are wheels in motion for the next round of diagnostics. Tomorrow I will have a swallow test and tomorrow  I will be booked for an endoscopy which will more than likely be scheduled for Wednesday unless in the two days prior there is a cancellation or an opening on the trauma theatre list.  So while my heart and head is at home I am so very sad that I have to admit to myself I’m not looking at heading there anytime soon.

I’m sad, I’m tired, I’m over it, I’m drained, I’m exhausted, I’m confused, I’m scared and I’m flat. I’ve lost my positive sparkle and happy outlook and I just want to curl up in a ball and hide under my hospital blanket until everything is back on track.

I did a face off to try and cheer me up and help me keep perspective, not sure it worked but here it is…..

I had a funny moment at my 3am this morning when the nurse came in to do my  regular observations.  My overnight nurse was a lovely stoutly middle aged Russian lady with a thick accent that was completely monotone.

She turns on the light and then says to me “you lost lots of weight yeah? Your boobie escaped baggy sack of jimjams. You must buy new”

Today is going to be short and sweet (not actually that sweet really) today.

I woke up at 4am having another acute episode of pain, got some pain relief into me to take off the edge however the pain didn’t subside at all and I couldn’t get back to sleep. Between then and when the doctor arrived I had another 3 acute episodes with the last of them actually occurring as the surgical team arrived. As horrible as it was it was an eye opening experience for the medical team to see the episodes and how much discomfort they bring, he could even feel my stomach moving as it was contracting in pain.

I am officially an enigma case and they can’t quite put a finger on what is actually going on so they want to do a couple more tests. I will be doing a swallow test/x-ray over the weekend and it’s more than likely I will be scheduled for an endoscopy on Monday to have an internal viewing to see if we can find the cause. So I’m definitely having a weekend in the hospital.

Throughout the day I had 9 episodes which has been more than the last couple days which is potentially attritbuted to the reintroduction of food.

I am very over it, drained, exhausted and impatient but I know this is unfortunately where I need to be as I simple wouldn’t cope without the pain relief available to me here.

With my fasting ban lifted I am now able to have access to the HEP Menu (High energy high protein) and the serves are ridiculously huge.

While I ordered a ‘small’ serving I still got this mammoth plate of food which I still couldn’t even get 1/4 of the way through it and it felt and sounds like early days when I started real food again post op. Obviously Percy did a bit of resetting during his food vacation and needs to readjust to being used again.

So all in all……I’m eating and Percy has forgotten how to. I’m still here. I’m still in pain. I’m still impatient and over it. I’m missing my boys like mad. And I’m damn tired! I honestly can’t wait to be able to write a happy positive and inspiring post again.

Today is a much earlier in the day entry that I normally do but in all honesty I can’t see myself have anything else to report. Not much happens in this place after 6pm.

Still in hospital, still have no answers, still don’t know when I am getting out and still in a decent amount of pain.

Have confirmed my MRCP came back clear means that Percy is in pristine condition and whatever is going on is not directly related to my sleeve. My organs are also clear so no stones in any of my organs and no inflammation in my pancreas so that counts out any kidney, bile duct or liver stones and pancreatitis.

They referred me through to urology for an assessment of my bladder and kidneys due to some abnormal urine. I have also got the all clear from urology so this means no severe UTI or a blood clot in my bladder as was also suspected.

The urologist will now refer me back to the surgical team who is going to provide them with a consideration that I may have Superior Mesenteric Artery Syndrome (SMA Syndrome). He explained to me that it’s when a muscle to your intestines shifts and leaves the opening at a very acute angle which can cause the pain, head spins, episodes of chronic contraction like pains, nausea, messing with my heart rate and just basically feeling crappy! This can be attributed to my huge weight loss in a short amount of time. This isn’t a diagnosis but just his thoughts to refer back to the surgical team. I will have to wait to find out at my next surgical visit hopefully tomorrow but may not be until Monday now the weekend is here.

The constant pain is still there and I have had 8 episodes of chronic pain throughout the day. The constant pain is being managed with fentanyl.

On the plus side the urologist has lifted my fasting requirement and my IV had been removed. I am now able to rejoin the world of eating and drinking with Jamie bringing me a ‘real’ coffee when he came in to visit.

I also had another NSV today with the nurses with them being able to use a standard person cuff on the blood pressure machine rather than needing the larger cuff.

How is my mind? Still not great, still just want answers and want to get home but I am slightly relieved that all the super nasties have been eliminated and over the moon that Percy is looking pristine…….now the wait continues to find out a definitive answer of what is actually happening!

I am so very overwhelmed with the stream of messages, phone calls and visits of concern and checking in on how I am going!

It’s heart warming to know so many people care! It’s when the chips are down that the people who matter step up and I am so truly honoured to have so many people by my side! 😍😍

Day 3 completed as an inpatient and I still am none the wiser about what is going on!

The chronic pain episodes have substantially decreased with the frequency they are happening and when they do happen they aren’t as long or as intense. They are still crazy painful but I can silently endure the pain breathing through it rather than screaming the house down.

I am still however having the constant throbbing pain in my chest that is only under control with the aid of pain killers. I still have blood in my urine and my heart rate is also very low and way lower than normal.

Today I had a MRCP scan completed this afternoon. This is a type of MRI to look at what’s going on with my abdominal organs. I believe they are looking for stones to be the culprit. I didn’t get back until nearly 4pm so now it’s too late for me to get the results back today so I have to continue nil by mouth until ward rounds tomorrow morning.

I’m glad my mum is here now, sometimes even as an adult you just need a cuddle from your mum!

How am I coping? In all honesty I am not coping at all well. I am an emotional wreck and constantly on the brink of tears, I’m sick of not knowing what’s going on in my body, I just want an action plan or treatment plan to fix whatever is going on so that I can get better and get back on track. I am tired, I’m sore, I’m cranky, I’m thirsty and I’m missing my boys so very badly.

I guess I can reflect on two NSV’s today! The first being that I actually now fit into a standard issue hospital gown and it actually does up comfortably as opposed to be having to wear 2 as they didn’t do up.

The second being that I fit in a standard wheelchair and didn’t need a Bariatric wheelchair to take me to radiology today.

So that’s me done for today. I’m normally a happy shiny positive person but today it just can’t be done. I honestly just want to curl up in a ball crying and sleep until this is all over!

I am so very overwhelmed with the amount of love support concern and well wishes that I have been receiving over the last few days, it really does help knowing I have so many people who care about me!! So I am cheers you all with my dinner of chips………ice chips that is 😫

Weigh in Wednesday has been posting this week as I am still in hospital, I still am no closer to figuring out what is going on, I’m still on nil my mouth meanings it’s been nearly 48 hours since I have had anything to eat or drink. I would give my left leg for a cup of coffee!!!!

The chronic waves of pain have settled down in both their intensity and frequency with me only have 2 episodes today. However the constant aching and throbbing pain is still there. I have tried going without pain killers but it’s just so damn painful and uncomfortable without them.

My mind probably isn’t in the best place, I’m  of enjoying at all being here. Missing my boys and feeling guilty for being here instead of being at home where I should be.  Jamie bought Lachlan in to visit after school for a cuddle which was lovely to see my little man but I didn’t enjoy the worry on his face with seeing mummy not feel well and the distress on his face leaving me here when it was time to leave.

Tomorrow morning Lilian is supposed to be coming to see me so I am really hoping for some kind of update or treatment plan to fix whatever is going on.

I guess the silver lining is that whenever I do eventually get to weight in 2 days of not eating should give me a decent result.

It's been a crappy 24 hours! I woke up at 12.30am in absolutely excruciating pain to the point that I was doubled over screaming and crying in pain. The pain felt very similar to that of a gall bladder attack, but I knew that it couldn't be that because o had my gall bladder removed 10 years ago.

I sat on the floor of the shower in the hot hot water and cried my way through the pain and after about 30 minutes is finally passed.

Just as I got back into bed I had another wave of horrific pain hit, and if anything it was worse than the first time! I couldn't deal with this pain so off I went to the Flinders Emergency Department.

I couldn't actually move upon arrival as I was doubled over screaming and groaning as another wave of pain hit me. Eventually got it and was triaged and then sat in the waiting room for not 1 hour, not 2 hours but just over 3 hours before I was seen. And during this time I had another 4 chronic pain waves pass in which I think I scared everyone else in the waiting room from all the noise and tears coming from me.

Was given endone which was fine for managing the constant dull thumping in my abdomen however it didn't even go close to touching the pain as the waves came through.

Will all the commotion of the other patients in the emergency department I didn't really want to make a scene but it got to the point I couldn't do it anymore and I unloaded with how severe the pain was. The fentanyl really helped lower the severity of the pain but the downside was that it played funny buggers with my heart rate and substantially dropped my heart rate, caused me to have dizzy spells and have my entire body do massive involuntary shivers.

Once this happened the doctors came quick smart! The plan of attack was bloods and an x-ray.

This was all done with me enduring another 4 waves of pain which then resulted in me being hooked up to the heart monitor with a low heart rate alarm set for when things were too low.

The first round of tests have come back with no definitive results so the next step was to have a CT scan with the contrast ink. By 2pm, 13 hours spent in the emergency department, I got to speak to the medical registrar who stated that they didn't know what was wrong she couldn't see anything adverse in the scan so I had to be referred to the surgical team.

The surgical resident came and did a consultant and was also equally confused about what was going on. He wanted to wait for the radiologists report to come back from the CT scan and to set me up with an IV as after 15 hours of no fluids I was beginning to look dehydrated.

The surgical resident returned with the senior surgical consultant to advise all my tests had returned without any indicators to define what was going on and is causing this lingering pain and these acute waves of pain.

He added in another medication (somac) into the IV to try and help settle my upset little stomach and advised that they were admitting me for ongoing pain management overnight. He was going to review me in the morning for consideration if he needed to do an exploratory endoscope to see what's going on internally that could be causing these severe episodes of pain!

It has not been a fun day. I obviously didn't get to my sleep specialist appointment and instead I spent the entire day in the hospital rotating between pain, tears, nausea, napping and wishing that I could have something to drink!

Lucky I rarely feel hungry these days as it makes not eating for 24 hours a bit easier to cope with!

No weigh in Wednesday tomorrow as I'm not home to do it…..

First day back at work after 10 days off. Lunchbox packed and ready to roll!

Driving to work this morning I had my first ‘HOLY CRAP’ moment of the day. When I strapped on my seatbelt and I looked down, I saw a huge gap between my belly and the steering wheel.

This time last year there was no gap at all!!

As I arrived at work I pulled out my security pass and I saw the photo of me taken in September last year, this was my second ‘HOLY CRAP’ moment of the day.


My third ‘HOLY CRAP’ moment of the day was when I copped a reflection of myself in the mirror and saw my current favourite dress (that never used to fit) was hanging off me like a sack!

Looks like I need a new favourite dress!

It was a busy day at work playing catch up in meeting meaning my fluid levels weren’t as good as they should be which has resulted in my having a massive headache by the time I got home.

Quick dinner, last nights was so delicious I decided to have the same again!

Despite being absolutely spent by the time Lachlan was asleep, I pushed through the exhaustion and head off to the gym. I got there after hours and I’m not yet comfortable using the weights equipment on the main deck so I just focused on the cardio side of things.

Both of my beloved X-trainers were used so I decided to push myself on the treadmill varying both the incline and the speed substantially and over the 40 minutes I was there I burnt 619 calories along the way.

The only downfall of me going to the gym so late in the day is that I come home hungry and I know that I shouldn’t be eating so late at night and just before bed!

Tomorrow morning I’m back off to the sleep specialist. I’m very interested to see how this appointment is going to go!