Tag Archives: endoscopy

Big decisions

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Courtesy of stuff.co.nz

Courtesy of stuff.co.nz

We’ve recently had to make a decision about where we’re headed with M’s health and what tests, if any, we want to push GOSH to consider.

We’ve had a mixed success with the Movicol as he has started using the toilet successfully again and we’ve been able to banish the pull-ups to the bottom of the cupboard for the next time there’s a “just in case” situation.  However, M now seems to be fluctuating between constipation and chronic diarrhoea and we’ve reduced his dose down to 3 sachets a day as the 4 were really proving to be too much for his system. We’ve tentatively settled there, even though it doesn’t yet feel 100% right.

The positive and best thing is that he’s conquered the toileting struggles.  These had been a major source of distress over the summer and it’s nice to back on an even keel.  M feels as if he’s more in control of his body – well as much as he can be whilst dealing with the ongoing battle with the symptoms of the EGID – and he’s really happy in school.  What’s more, school have been working hard at putting a medical care plan in place for him to deal with the changing nature of his EGID and his medicines, which means that we feel confident that they’re taking the situation seriously and will support him during the school day.

Courtesy of warriorfitness.org

Courtesy of warriorfitness.org

BUT – and you all knew that was coming didn’t you? – I’m still feeling unsettled about his over-all health and have a feeling that we’re not really dealing with the root cause of the problem. Despite some days when it appears he could eat for Britain, his appetite is down and his lunch-box is emptier than ever.  He’s beginning to object more to taking his daily medicines and there’s been numerous mornings recently when I’ve held my sobbing child on my lap and had to coax him to take the full implement prescribed.

His sleep patterns are off once again and I’ve lost count of how many mornings I’ve woken up to find a small limpet-like child clinging to me and stealing the duvet from my back.  Last night, I disappeared into my bed at 11.20pm, having found M still avidly reading his atlas and discovering new and interesting facts to share with me.  It has to be said that a lot of the sleep problems appear to be related to his emotional and psychological health as when Mike came upstairs just 10 minutes later, M was flat out and fast asleep in his own bed.  It’s as if he needs to be reassured that Mummy is nearby and once that’s clear, then all is well with the world and he can let himself drift off to sleep.

He’s emotional and tired and fed-up; and, to be honest, so are we.  We’re working hard at remembering and focussing on the positives, but sometimes that feels like a step too far. The constant barrage of frustrated behaviour, food management, pain relief, sleeplessness, appointments. emails and phone-calls have drained me completely and I just felt unable to face another discussion with yet another faceless registrar at GOSH, who has little or no knowledge of M and needs me to bring them up to speed before I even get to the point of the phone-call.

So, at the beginning of the week, I asked Mike to speak to GOSH and put forward our case for another set of scopes.  It’s been nearly 2 years since the last ones were done and we felt it was high time he was checked again.  We’ve got no real answers as to whether all the medicines are 1) necessary or 2) working, the limited diet is a strain and this past week we seem to have added raspberries to the list of forbidden foods.  This might seem like an easy decision to make, something of a no-brainer, but, as some of you may remember from my previous blog posts, M suffers from an allergic reaction to the anaesthetic. It’s been a big decision to make to put him through an ordeal that we hope might provide some answers, but that we know will definitely cause him pain.

rainbow

All I can say is that someone must have been smiling down on Mike on Monday.  I’d warned him that his initial phone-call would only get us put on the list and that if he was lucky he’d speak to a registrar on Tuesday or maybe Wednesday.  I fully expected that we’d then have to wait for M’s consultant, Dr H, to be consulted and that we might get a final answer by the end of the week.  If he argued our case well enough, then there was a possibility we’d get a yes, but I prepared him for battle.  So imagine my surprise at getting a text message at 3.45pm on the same day saying that not only had the registrar been spoken to, but they had agreed to recommend scopes and, what was more, Dr H had been contacted, given her agreement and scopes would be scheduled for 6-8 weeks time.

The GOSH gastro team have expressed the same concerns about M’s progress as us and made making that big decision for more investigations much easier than I could ever have hoped. So all we need to do now is wait for the appointment date to be set and it’ll be full steam ahead.

D-day

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surgery

As we head up to London today for yet another appointment at GOSH, I thought I’d complete the story started in my last blog.

D-day had finally arrived. We got up, washed, dressed and packed up our bags before heading over the road to the ward for M’s scopes. We had a lot of hope pinned to these simple tests and both believed that we would get some answers once they had been done.

When your child faces surgery of any kind, as a parent you are understandably nervous. The medical team at GOSH did their best to put us at ease and to reassure us that all would be well whilst M was being examined. My biggest concern was the anaesthetic. M had broken his left arm in 4 places when he was 4 and had had to have 2 operations to put it back together. Both times he had experienced a noticeable reaction to the anaesthetic used with symptoms of a high temperature, hallucinations and thrashing about as he came round from it. The second time had been worse than the first and I was concerned about how he would react this third time as I had been warned that his reaction may become more severe each time he had to undergo anesthesia. His consultant and the anesthetist talked this over with us and reassured me that they would keep an eye on him.

We went with him when he was given the anaesthetic and this experience hit Mike particularly hard. On both of the previous occasions, only one parent had been allowed to accompany M into the prep room, so I had “been there and done it” before. The sight of M chatting away one moment and drifting to sleep with his eyes rolling back in his head the next, reduced Mike to stunned silence and to something of an emotional wreck. We returned to the waiting area, where the nurse advised us that it would all be over in about 30 minutes, so enough time to go and get a coffee at the nearby coffee shop.

Taking note of my need for a sweet and caffeinated beverage (Vanilla latte!) and his own for some fresh air , Mike and I wandered out into the winter weather and down the street. Neither of us wanted to linger, so we grabbed a coffee to go and hurried back to the waiting room. What happened next was every parent’s nightmare. M did not come out of his surgery within half an hour, or indeed within an hour. After over an hour of anxious waiting and quizzing of the nursing staff, we were finally ushered into the recovery room to see our boy.

The operation had not gone as smoothly as hoped because of the state of M’s insides. The colonscopy had gone well, but when they inserted the tube for his endoscopy, they discovered that his intestines had been badly damaged by the as yet undiagnosed condition and he had bled heavily as they tried to examine and take biopsies for testing. In the end, they had done what they could and had left it that. His consultant was confident that she knew what the problem was, even with an incomplete examination done, but she wanted to wait for the results of the biopsies before confirming her diagnosis.

The original plan had been that M would come round from the anaesthetic, have a small bite to eat, use the toilet and then be discharged by lunch-time. The extended length of the operation and then the extreme reaction to the anaesthetic meant that we’d be lucky if we got out by dinner. Fortunately, Mike and I had anticipated this turn of events, well the reaction bit at least, and had sensibly booked a later train to take us back home.

I dealt with the thrashing, the biting, the uncontrollable sobbing and the screaming as the anaesthetic passed through M’s tiny body, until finally he fell into a fitful sleep. We survived the departure of those children who had been scoped after him and the arrival of those for the afternoon list for theatre. We manoeuvred ourselves, M’s bed and our bags away from the main recovery room to the “spare machinery” room as they needed the bed space for those new patients. And we appreciated the drinks and sandwiches they provided for us and for M when he eventually woke up completely.

As the consultant left at the end of her day, we were finally told that M was going to be discharged and we left GOSH approximately 10 hours after we’d entered it that very morning. Mike flagged down a passing black cab and the cabbie helped us in with our luggage as I carried our suffering and sleepy lad in and onto my lap. We had acquired some additional soft toys on our trip, well every boy needs a gruffalo and mouse to see them through surgery, as well as a GOSH bear for G as a present from our stay away from home and we needed extra arms to manage those without losing them along the way.

Getting onto the train at Paddington felt like no mean feat, but we were reassured and hopeful by our consultant’s assurances that she knew at last what we were dealing with and prepared for our return visit less than a month later.

The countdown begins

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As the date for his scopes, endoscopy and colonscopy, approached, and filled with dozens of questions, I read the information sheets sent by GOSH and forum links found through vague internet searches to understand what would be involved. Our trip to London was going to be a 2 night stay and this is where GOSH really comes into its own. They have the most amazing facility for families such as ours with children who need to be there for more than a flying visit and are travelling from outside of the M25. The Patient Hotel is situated opposite the main entrance to the hospital and is free – yes you read that correctly! – accommodation provided to patients and their families who need to stay overnight. All they ask is a £10 deposit for the room, returnable when you check-out and a £10 deposit for the TV remote control, which is similarly refunded.

Each room is large and practical as well as comfortable, allowing for hospital beds or other specialised medical equipment to be reassuringly on hand without crowding the space. There is a large kitchen and sitting room area open to everyone on every floor as well as a pile of menus for the local restaurants and takeaways. When you’re facing the trauma of your child being in hospital for however long, having one less thing to think about is invaluable and knowing that you’re on hand for the hospital, a real god-send.

M was due to be seen for his pre-op first thing in the morning, so we travelled up to London by train the night before, leaving G once again in my Mum’s capable hands. We settled quickly into our room before heading out to have some dinner and then to get some sleep before the challenging days ahead. The pre-op was an emotionally charged occasion for us all. M was allowed to eat breakfast on that morning (Wednesday), but would then be unable to eat any solid food until after his scopes, which were being performed on the following day (Thursday). His bowels needed to be “prepped” for the scopes, so his system was flushed out completed by a series of strong laxatives given in intervals during the Wednesday.

M approached the whole experience with a stoicism that belied his years. He chatted cheerfully to the nurses we met during the pre-op, listened intently when the anesthetist talked about the procedure and refused the “magic” cream to numb his arm whilst his cannula was put in. Armed with the list of the few things he was allowed to consume before his operation and filled with more than my fair-share of trepidation, we left GOSH at lunchtime to while away the hours before bed.

M understood that Mummy would have to eat during his 24+ hours without food because of my diabetes, but he asked Daddy to stick to his enforced fast with him. Mike gladly agreed and the pair of them survived on ice-lollies and fruit juice whilst I enjoyed, somewhat guiltily, the sandwiches and snacks I needed to keep me going throughout the day.

With a long day ahead of us, we prepared as best we could. We know M would experience intense diarrhoea as his bowels were emptied, so we bought some boys training pants to keep his clothes from being spoiled. We also decided to take him to the theatre to see “Stick Man” by Julia Donaldson. This took us into the evening and we finally headed back to our room at GOSH. I had hoped that M would settle to sleep quite quickly, though looking back at it now, I have no idea why I thought that day would be so very different to any other! I think I had hoped that the lack of food since 7am would mean that his body would be tired and push him towards sleep, but instead he and I sat up watching “Monsters Inc” on our portable DVD until at least 11pm.

M was understandably nervous about what was going to happen, though we had taken time to explain it to him and to answer any questions he had. I suspect that his sense of humour was probably what helped him the most, the prospect of a camera going down his throat, but even more hysterically, up his bottom, to take photos of his tummy had him giggling for days and even now, he laughs every time he thinks of it.

By midnight on that Wednesday evening, our room was finally quiet and whilst it took me a little longer to drift off to sleep, we all managed to get a reasonably good night’s rest.