Saturday, April 19, 2014

Can we rewind please?

Today is definitely one of those best left forgotten days.

We had to go to the hospital with Chelsea for a colonoscopy procedure with the hope that answers would be given.  The MRI scan had showed nothing to really be concerned about - perhaps a slight inflammation of the large intestine but nothing of any note that would cause anaemia of such horrendous proportions.

The appointment time was 11.45am.  We arrived just after 11.30am and waited.  We waited and waited.  Poor Chelsea was feeling so weak.  Her complexion was whiter than white, she demonstrated lethargic symptoms and complained of feeling sick.  She sat with her head in her hands. It's hardly surprising.  She had eaten very little in the 3 weeks leading up to the hospital stay, then whilst in hospital she struggled with bouts of sickness throughout.  She was put on a clear fluid only diet in order to have a couple of planned procedures done (which were frustratingly cancelled), and generally suffered stress and disruption throughout her time there.  I didn't mention the little gem of her being woken at 1am by a patient in a nearby ward and threatening to hit her did I?  Thankfully another patient was witness to the incident and went to find a member of staff who escorted the threatening lady back to her bed.   The same lady woke Chelsea again when she  returned to her bedside at 2.30am and got angry calling her either a liar or thick as she didn't believe she was poorly.  That little episode ended with Chelsea having a cup of water thrown over her before the nurses intervened.

At home, Chelsea was on a very limited diet and then on a clear fluid only diet for the 24 hours leading up to the colonoscopy.  She was also given laxatives.

No wonder she was feeling so bad.  Ill and very very hungry.

We had paid for 2 hours of parking, one hour of that being wasted with a waiting room sit.  I know that in hospitals things don't always go to plan and I totally get that, but surely an appointment time is an appointment time and if a patient has ensured that they arrive in good time, it is only general courtesy to convey the possibility of a delay.

Apparently not.  No explanation nor apology was offered for the hours wait.

When Chelsea went off for the box ticking exercise with the nurse, Lee and I made our way back downstairs to put more money in the parking meter.  We had expected to be there for longer than two hours but wanted to check the procedure was going ahead today before forking out more pennies.  Typical that the machines chose today to mess around and finally a fourth machine was found and payment was made. I really didn't need that frustration today and I definitely didn't need the possible £60 fine!

Heading back inside to rejoin Lee and Amara, we went to the cafe for a snack.  We checked on Chelsea twice but there was no news, so at 3pm we went to sit in the car and await news - trying to keep Amara quiet in a hospital waiting room is really no fun at all.  Just before 4pm I received a text from Chelsea with the news I had been dreading as I knew what the resulting reaction would be.

She had to stay in.

The colonoscopy procedure couldn't be completed due to mass ulcerations and bleeding.  There was a lot of blood, A LOT of blood, clearly the cause of the anaemia.  Severe Crohn's disease was written on the notes, whilst the Doctor talked of Inflammatory Bowel Disease.  Gastritis is also added to the mix.  She should certainly never have been allowed home.

My poor girl has been going through so much and we were blissfully unaware of the seriousness of it all.

I hugged Chelsea and tears from both of us flowed.  The disappointment of having to remain in hospital was clear to see.  She had been very much looking forward to feasting on her favourite foods again and we had planned on a pizza fest after the procedure.  Not for the first time I felt so helpless.   My daughter was looking at me in the eye, hers filled with watery tears as she expressed her sadness and I could do nothing to ease how she was feeling at that moment.  My heart was torn into pieces and I just wanted a magic wand to make it all cease.

I returned home (an 80 minute or so round trip) with Lee and Amara to get everything that Chelsea needed for another hospital stay.  We sorted out nightwear and clothing, food and drinks, a phone charger and the DVD player.

Yuki our gorgeous budgie, our very last budgie of the group, was found dead.  I just couldn't deal with that at that moment and the emotional floodgates opened.  Once opened it was difficult to close them again and infrequent sobs could be heard and tears fell as more items were added to the bag.

We headed back to the hospital, this time with Taisia in tow.  Chelsea was placed back on the same ward as before and is even in the same bed.  We had a chat with the consultant in charge and talked about treatment and time-scales.   At least another 4-5 days in hospital is necessary in order to bring the ulcerations and bleeding under control.  Medication is being given intravenously as tablet form wouldn't work at this stage.

At 6pm we left the hospital and returned home to feed the rest of the crew.  Logistically things are a bit of struggle and unfortunately financially things are tricky - although that is of course the very least of our concerns.  Up to now we have had to put in £120 worth of fuel for the to-ing and fro-ing to hospital (we usually manage on around £20 a week if that), and the car parking charges soon add up.  Today alone we paid £8 to park in the hospital car park.  Of course, there are all the little 'extra's' that go along with a hospital stay - any needed toiletries, boredom busters, food cravings etc.  As said, the financial cost is the very least of our worries at this time, but wow, it has sure opened up our eyes.  I am definitely going to look at some sort of fundraising for families undergoing hospital care and struggling with the costs involved.

I am so very very thankful that the diagnosis is as is, it could have been so very much worse.

Now I'm off to have a chat with the Easter Bunny about the possibility of an Egg Hunt....


  1. What a challenging day to say the least. An awful experience for you all especially Chelsea. I know we're all very grateful for nhs, but your experience could have been a whole lot better if some individuals extend just a bit of common courtesy and empathy, even just keeping you in the picture regards delayed appointments would reduce stress all round. Parking is a big issue at our hospital, the cost of it is shocking, making it difficult or impossible for people to either visit or support loved ones. We're lucky because we're local to the hospital but very difficult if like you you have a distance to travel. I do hope Chelsea week gets better and she is home quickly. I wonder if there are any fundraising groups at the hospital already that help people financially, support loved ones. Sorry to hear about the poor budget, as I said... what a day!!

  2. Hi Julia, I have been out of touch for the last couple of months and I have just read all your blogs. I just want to send you all a massive hug and so much love. I am not sure where you are but we are in Glastonbury. If there is ANYTHING we can do, please ask and I will drop everything and race to your aid.

    In the meantime, all the wonderful people in The Freedom Journey group want to ease your financial burden and will be making donations through Paypal.

    Please accept these gifts and all our love xxxxx

  3. I'm so sorry about chelsea's unpleasant stay in hospital, awful that she had to endure abuse from a patient :(

  4. Just caught up with you via a gp mama on Facebook. So sorry to read this you must be shattered.

    Will keep
    You all in prayers and will also
    An eye on the FB gp link and here too