Not Where I Thought We'd Be!!

Let's Start At The End!

I'm writing this as I sit at home watching my daughter recover from 3 anaesthetics and 2 surgeries in just 6 days, it's just not where I thought we would be after entering the hospital on July 17th for stoma surgery! It hasn't been a smooth journey, to begin with, covid cancelled our planned surgery twice and our 3rd try was booked for August 20th, but on July 7th I got a phone call offering her a slot on July 17th and we snapped it up straight away. So Pops went straight into isolation as her doctor requested and went for her Covid test 3 days before surgery.

On the morning of surgery her Doctor called at 8.30am, which I knew wasn't a good sign, he told me there were no individual cubicles available so her operation needed to be cancelled!! He said they could offer her a bed on a bay, which isn't ideal for Pops due to her sensory issues, but we took it on the understanding there weren't babies in her bay. We went to the hospital as planned at 12.30pm to be admitted, we were then left in the waiting room for 90 minutes before we were shown to her room. We had filled in a care plan with the play specialists before admission, so they should have been aware of her needs! By the time we got to the ward, Pops was very anxious. The anaesthetist came to see us and told us surgery would be around 3pm, they had been made aware she requires a pre-med and what the medication was, yet they didn't have any available on the ward for her! This meant she didn't get her pre-med until 15 minutes before going down to theatre, so totally pointless.

After surgery, we were taken to the ward and immediately placed in a bay with a baby!! I requested a nurse in charge and waited for over an hour for someone to come and see us, when she finally came I was told nothing could be done and we would have to peak with the ward manager the next day. Luckily Pops was heavily medicated and slept for most of the night and through to the morning. The following morning when she was more awake she was becoming agitated by the baby, patient liaison came to see me, again explained there were no rooms, and offered us a bay with a 3-year-old and an 8-year-old, the was also not at all suitable, Pops has lots of sensory issues surrounding televisions, noise, toys that make noises etc, so I had to accept that we needed to stay put until a room was available, which they told me would most likely be not at all. I tried to minimise her distress by keeping the curtains closed, making her wear her ear defenders etc and we bumbled through for a few hours. By 8pm tension was fever pitch, the parents of the baby were amazing, luckily knew about autism so I didn't have to constantly explain about Pops shouting out and telling their baby to be quiet. I called the nurse again and told her we needed to move right away, I didn't care if they put us in a broom cupboard or even another ward. Magically a room on the ward was found!! We moved at midnight on Sunday and I was hopeful for a quicker recovery for Pops now her anxiety calmed slightly.

This is when things started to turn, Sunday the day after her operation Pops was sat up in bed eating and getting up to go to the toilet. By the evening she has turned a funny colour and started vomiting, I raised my concerns with the nurse taking care of her and was told just to persevere, encourage her to drink lots and keep taking the medicine. By the Monday her colour had gone, she was grey, there was no output from her stoma, she was now not even keeping liquid down and constantly wrenching even though she was on regular anti-sickness medicine. This remained the same until Thursday when a doctor came and listened to my concerns. Her stoma was examined and they seemed concerned by something as we were sent for a scan.

At the scan, a camera and tube were passed into her stoma and contrast dye put in, as soon as they started putting the dye in it was backing up and coming straight back out again, I knew even as a doctor this shouldn't be happening. They called a doctor in to have a look at the images while they were doing them, I could only hear hushed whispers from behind the screen but knew it wasn't good. We were sent back to the ward to wait for the doctors. They came within 30 minutes of the scan and told me it was bad news. Pops would need another operation. When a stoma is created the bowel is cut into 2 pieces, the proximal is brought to the surface and formed into a stoma, the distal is stitched to the inside of the stomach lining to close it off. During Pops operation, the distal was brought out and made into a stoma! This is why there had been no output, nothing was coming into to output! Meanwhile the proximal was filling with gas and any food she managed to keep down and filling, going nowhere and hitting her stomach wall!! to say I was cross is an understatement. Nobody seemed to be able to explain to me why or how this even happened, her actual surgeon was now on annual leave and wouldn't be able to come and explain it to me himself.

She went down for corrective surgery the following day on the emergency list, she was down for 4 hours, her original operation taking less than 2 hours. She had a slow recovery from her 2nd operation and had a morphine pump, she was highly reliant on it for 3 days. Her stoma started working straight away and we slowly started weaning her off the morphine and upping her oral medication so we could get home finally ager 13 days!

We are finally home and we are now learning to live with a stoma! We are stuck in a bit of leaky hell at the moment. Unfortunately due to the repeated surgery Pops has been left with some quite bad scarring, the surface of her skin around the stoma is all raised and jagged. This doesn't make for great bonding of the colostomy bag. We luckily have a lovely stoma nurse who comes to see us every few days and we are trying hard to find the correct product for her.

It's been a whirlwind and an emotionally draining 2 weeks, we plan to take the rest of the summer holidays to rest up and prepare for the return to school. I have made an official complaint to the NHS trust and am awaiting their response to the whole situation, there is a whole lot more to this story in regards to our treatment from the moment we arrived in hospital to the moment we left, but I can't fully go into the ins and outs, but I will be getting answers soon.

Thanks For Reading

Mandy 

xx



  1. Aww! Poor Pops. She has really been through it. I am so glad that she finally got moved to somewhere quieter and I am so sorry the surgery didn't go to plan. Sending love and hugs and I hope Pops is feeling better soon. x

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