Change of plans when the unexpected happens!
- Sarah Louise Clarke
- May 9, 2024
- 6 min read
Our hospital experience!
Written and typed 9/05/2024
Just when you think you know your disabled child! What makes them tick! Their likes and dislikes are! What they can tolerate and when things are just too much for them to cope! You get into a regular consistent routine and it only takes one event for things to go medically wrong with your child!
For us it is teething. Every time teething occurs, we stop eating and drinking, leading to constipation. But every few years we end up in hospital with faecal loading!
Faecal Impaction
I know a lot about my child. I know she has multiple disabilities and the biggest one we are facing alongside Autism spectrum disorder level 3, is sensory processing disorder.
The ability to tolerate clothing, and sensory textures around the mouth! The overstimulated environments with bright lights, loud sounds and crowds. Food textures, teeth cleaning. The showering, toileting and transitioning environments that all cause distress!
Now we find ourselves in hospital. The invasive treatments to resolve health issues and the trauma and distress of having people in our personal space, bubble and touching our most sensitive areas. Ours is definitely the mouth! The challenges of teething, cleaning teeth (which has always been impossible), to then having a nasal gastric tube to administer fluids and medication.
I knew constipation was a regular thing for my 9 year old who has always had digestive issues since birth, but I didn't realise my daughter's restricted food diet would lead to faecal loading to the extent of right up into the small intestine! Xrays show the faecal impaction up inside my little girl's intestine! By then we knew my babe needed immediate medical treatment!
For years I have regularly given my daughter Movacol to keep on top of her poos. I became the "bowel control"!
I would be using Movacol daily! Put a sachet in her food until we go close to pooing liquid, pulling back until she's just starting to get solid again. Cycle repeated!
Thinking back over the years, my daughter has not been able to poo regularly without the assistance of laxatives. She had faecal loading at 8 months, 12 months, again in 2019 and we ended up in hospital with Influenza A and we stopped eating and drinking which lead to faecal impaction!
We had a good 5 years before this recent hospital admission.
Today marks a full 9 days in hospital!
Before we knew my daughter was experiencing faecal impaction, we came into hospital for teething, not eating or drinking issues. We were sent home after day one and then after seeing our GP, she referred us to a different hospital and we have been here ever since.
We tried suppositories and enemas and with no poo, we had the xray and it showed the faecal loading! I expected constipation, a full bowel, but not impaction in the small intestine.
For my babe, we tried sedation to get the cannula in and the nasal gastric tube and the first two procedures were unsuccessful. My daughter was distressed and overwhelmed and we knew that only a full anaesthetic surgery would work for my babe! 3rd procedure successful!
We had to clear out the intestine and that would then assist the bowels. She still needs laxatives to keep her system moving. The only way to get her system working was the nasal gastric tube! Because my babe wouldn't drink, that was our next option.
Fluids in an IV cannula do provide hydration when you are dehydrated, but it wouldn't be the effective way to get the intestine sorted.
Fluid would gather in the bladder until urinary retention started occurring, and we needed to insert a catheter! This was before she was able to wee in the shower.
My dear little babe was so traumatised from that experience, she closed herself off and wouldn't give eye contact! She is a little more responsive now, but still not the Christina we know!
With the nasal gastric tube, day 4, Christina's settled into it. She's been having fluids, medication, laxatives, apple juice to help her blood sugar and now she is tolerating 2 showers a day! A chance to wee as that's her only avenue at the moment. The hospital nappies are great. I have learnt how to change bed sheets, hospital bluey bed pads and clean up poo floods. To roll a patient and shower around a nasal gastric tube!
I have learnt how the hospital system works and sadly settled into the hospital ward and room. We have a room to ourselves that we can keep sensory comfortable, and so far that has been great.
Our girl has lost 3 kilos, and we are trying to get Christina to sit in a chair and sip from my drink bottle, which we added osmolax relief.
This experience has made me realise that my child will always need bowel and urine supports, laxatives in her water every day and a soft food diet. Full recovery is expected up to 6 months. But we have fantastic therapists and supports involved but we do need to find a psychologist that specialises in disability and trauma, a dietitian and Continence specialist.
Our ndis plan may have to be reviewed due to the change in circumstances. And our focus will be on drinking, eating, toileting and taking medicine. On more daily care support and learning to be independent or at least get on the road to becoming independent! It will take time!
While this event has been unexpected, I was not and are not surprised by this recent hospital admission!
As many parents of a disability child would know, unexpected events do happen! Change of plans have to be made. They are not small changes either. Sometimes they need to alter the way a person needs to live. They can't always adapt to us, so we have to adapt to them. People may not agree or understand our plans or methods, but when you are a parent living inside the world of disability with your child, you do what you feel is best for your child!
I have managed to wrap my head around the level of disability my child has. Her school attendance will be much lower than a neurotypical child, as things go medically wrong. Age is certainly just a number. I say my child is chronologically 9 years of age, as she has been alive for that length of time, but looking at the extent of our disabilities, we are closer to toddler age intellect.
But my babe is beautiful!
I love being a mum to my daughter!
I was highly distressed and anxious by my child's suffering. Watching a procedure and talking to my daughter before she falls asleep with the gas, was highly traumatic, especially inserting the tube and when she pulled the nasal gastric tube out twice!
But after a week in hospital, I think the worst is over. Now we are just working on getting Christina's strength and confidence back! Eating and drinking again independently, which will also take time.
Even while exhausted, I still find humour! I wear this with pride!
My parents, sister and I have been taking turns in looking after Christina so we all get enough sleep and self care. Mine is suffering a little bit, but I have Jesus, my family, a fantastic medical team at Blacktown Hospital, and my knitting. I learnt to knit 2 weeks before this event and it's been such a comfort. I started a new job the week before our hospital admission and my new boss is fantastic and very understanding! Keeping up with the updating everyone as well.
We may go home next week with the nasal gastric tube. (They last for a month). The hospital will teach us how to look after one and a nurse will come into the house once a week as well. We are waiting for Christina to eat and drink before we go home and if not, then I think the tube may be our norm! We also need the hospital to finalise the supports they are organising for us before we are discharged.
Like most things, it's time and patience! Self care and sleep when we can.
This post has helped me process my experience with my beautiful babe daughter!
I would also like to thank my friends and family for the regular check in messages! They are always welcome!
Until next post,
Love and care,
Sarah Louise Clarke
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