Two weeks have almost passed since Hugo went to Sheffield to have his tonsils and adenoids out. I am literally bursting with pride at how he has handled this. It has given me so much confidence in his ability to deal with this condition. He has been simply amazing.
The operation itself was a success, and his recovery process so far has gone very well. However, our experience at Sheffield Hospital was far from good. If anything, it made me realise that our NHS needs severe help and some serious organising.
Hugo was due to have his operation in the afternoon. We had to be at Sheffield for 12 noon. Hugo was nil by mouth from 7am that morning. Anyone who knows Hugo, will know that he likes his food! Trying to explain to him that he wasn’t allowed anything was probably the most difficult task that day. Hugo knew he was going for an operation and was strangely excited, however I think this was simply due to his lack of understanding of what was about to happen to him! When we got to Sheffield, we were shown into a huge waiting room absolutely full to busting. There must have been about 35 children waiting for operations with their parents. We assumed we’d just be waiting for a short while until we’d be shown to Hugo’s ward. How wrong were we! A nurse came along to put Hugo’s ‘magic cream’ on his hands, in the middle of the waiting room. At this point we asked when Hugo will be shown to his ward. We were then told that he won’t be going to the ward until after the operation. We had to put our overnight bags in a locker in the waiting room and I was expected to collect them once Hugo was settled on the ward after his operation. I will return to this later on in this blog! It was now 1pm and still no sign of Hugo being taken to theatre. He was currently 4th on the list. I asked for an approximate time and we were told 4pm! This was my first major grumble. We had travelled from Lincoln for a 12 noon appointment, Danny had to leave at 3:30pm to collect the other two boys. We were not expecting to be sat in a waiting room until 4pm and I didn’t want to watch him being put to sleep on my own. Not only that, but Hugo is autistic and does not do waiting, he also becomes uncomfortable due to his Duchenne and he was hungry! Not a good combination. I was forced to speak to a nurse about this in the middle of the waiting room as there was no ‘private’ rooms available. Discussing your child’s needs in front of strangers in a waiting room was not exactly ideal! We eventually managed to convince them to put Hugo first on the list, meaning he would be gong to theatre at about 2pm.
Next, the anaesthetist came along for a pre-op assessment. Again, this was done in the middle of the busy waiting room! No patient confidentiality at all. We had to discuss the fine details of Duchenne with an anaesthetist who didn’t know much about the condition at all. When she asked how his heart function is at the moment, we explained that he’d had an ECG which flagged up a cardiomyopathy. We explained that this was followed up with an echocardiogram which showed that his heart function is currently ok and he doesn’t need medication at this stage. She then informed us that she wasn’t happy going ahead until she’d seen the scan report. By this point, I wasn’t impressed at the fact that we’d come all the way from Lincoln with a child with additional needs, and they hadn’t bothered to get the clinical reports that they needed. I appreciate that she has a job to do and she needs to ensure that she has everything in order to prevent her patients being at risk, but as a hospital, they knew Hugo had Duchenne, they had known his operation date for 3 months yet had failed to check any of this before his admission. By some miracle, I managed to convince her that the echocardiogram was fine. She must have seen that I was close to breaking point because Hugo was becoming restless and I was becoming angry at the lack of organisation. The consultant that originally saw Hugo at Sheffield knew all of this but for some reason it hadn’t been passed on to the surgeon who was operating. We had supposedly been sent to Sheffield so they could take better care of a child with Hugo’s condition. This mishap wasn’t giving me much confidence in the care provided at this hospital!
Next the surgeon came for a chat, yet again in the busy waiting room full of people! Hugo had been referred to have his tonsils removed to prevent any additional breathing difficulties as he gets older, when his lung function begins to deteriorate. The surgeon tried to talk us into having his tonsils ‘shaved’ instead to reduce their size. He explained that there was a risk that they would grow back and he would have to go through the procedure again. However, there was a quicker recovery rate. Danny and I discussed this and decided that we were already prepared for a difficult recovery process, but we were ultimately having this done to help extend his life by improving his breathing and lung function. Settling for a ‘quick fix’ operation was not what we were there for so we stuck to our original decision, which was made with our paediatrician, to have them fully removed. The surgeon didn’t seem particularly happy about this, it appeared that he wanted to do a quicker version to save himself time. Yet another professional that hadn’t bothered to read his notes and understand why he was having this done.
At 2:15, Hugo was told to change into his gown for theatre. Yep, you guessed it, in the middle of that damn waiting room! It would seem in Sheffield that children aren’t entitled to any patient dignity!! I will backtrack to the bag situation now! Earlier, we were told to our our overnight bags in a locker in the waiting room. Danny was due to leave once Hugo had been put to sleep, meaning I was on my own once he woke up from his operation. I had absolutely no intention of leaving my child after an operation, let alone an autistic child with poor mobility! It was not happening. I asked if I could take our bags to the ward before he goes down, I was told not a chance! I was then told that a nursing assistant MIGHT be able to collect them for me if I ask on the ward. I wasn’t particularly pleased about this as Hugo had some comfort items that I wanted him to have straight after. I was fighting a losing battle so I shoved his teddies and a dummy in my handbag and left our bags in a locker. We were finally on our way to theatre… walking! Poor Hugo had to walk to theatre in a hospital gown! Bear in mind he was tired by this point and this hospital is huge! But, he trotted off saying ‘going for my operation now’ with that permanent grin on his face.
The theatre team were actually very good, and they were amazing at settling Hugo. A theatre assistant read him a story while his cannula was inserted and they let both of us hold his hands. He flinched slightly at the cannula going in but he didn’t seem bothered. They explained that when the anaesthetic goes in, his arm will go cold as it travels through his vein but he would be asleep within seconds. As soon as he felt the sensation he panicked and shouted out ‘what are you doing to me’ and then just like that, he was asleep. Surprisingly, none of us were particularly emotional about this. I think this journey so far has made us very strong and we’ve been through so much that seeing him be put to sleep for just an hour seemed insignificant to the things that we will have to go through in the future. We were told he would be just under an hour and were given a pager which they said would buzz just before he wakes up so I could be there with him.
After 45 minutes I began to make my way to the recovery room even though my pager hadn’t buzzed. I was feeling a bit nervous by this point and wanted to make sure I was there. My phone started to ring and it was Danny, I assumed he had got lost trying to make his way out of Sheffield! I answered and he was panicking on the phone saying ‘Hugo is waking up, where are you, they’ve just phoned me’. I couldn’t believe it, the pager they gave me hadn’t buzzed at all, so I ran to the recovery room in a fluster. I got there and a miserable receptionist told me that my buzzer hadn’t gone off so to sit and wait! I shouted at this point that my son was waking up, the stupid pager wasn’t working and someone had phoned my husband. By this point, I could hear a child making a piercing wailing noise… it was Hugo, I recognise my own child’s cry every time. It’s a mothers instinct. I was pacing up and down outside the door listening to him crying, confused and in pain for what seemed like forever.
Eventually someone let me in and took me to Hugo. He was curled up on a trolley completely on his own, absolutely beside himself. Tears immediately rolled down my cheek and the first thing I said to a nurse who appeared was ‘how long has he been like this, why hasn’t he got his teddy that he took in with him, why did no one buzz my pager, I didn’t want him to wake up alone’. The staff must be used to seeing distressed parents but I was so upset that I wasn’t there for him. It turned out that they didn’t write down the number for the pager I had so was unable to buzz me. I couldn’t believe it, he is only 5 and has autism, they should have taken these things into account and I should have been there for him. I felt like his autism was being completely ignored and I felt a huge lack of support and understanding. I was left to comfort Hugo and console him by myself. He was out of control, spitting everywhere, crying, being sick and rolling around in pain. I had to ask a nurse to bring him some water because no one was looking after him. I eventually got on the bed with him and rocked him in my arms until he eventually calmed down. This took about 45 minutes! They finally came over to give him some morphine and after another 15 minutes he was sleeping in my arms.
We then returned to the ward and within half an hour he was tucking into his tea! He demolished a plate of fish and chips, 3 mini doughnuts, a slice of toast, a banana a yoghurt and a biscuit! His appetite was through the roof! Bless him, I was hoping to pinch a few left over chips but he ate the lot! Turned out the ward don’t provide any food the accompanying parent. Another grumble from me as they didn’t tell me this before admission so I had no food with me, the cafe wasn’t open and I wasn’t prepared to leave Hugo anyway. They overheard me discussing this with Danny on the phone and they eventually bought me a slice of toast and a cup of tea. Once Hugo’s pain relief started to wear off, he became distressed at about 6:30 but he soon settled after some morphine again. He was fast asleep by 10pm and slept right through to 6am the next morning. The nurses kept coming to do observations and they woke him up at 11am for more pain relief but he soon settled. By midnight, his oxygen levels were dipping and there was a slight panic that he may need some oxygen therapy but after an hour of monitoring, his levels picked up again.
Hugo are his breakfast the following morning and we went for a walk to the cafe so I could finally eat something, and bought Hugo a few snacks. By 10am he had the all clear to go home. He sang all the way home in the car and it was hard to believe he had just had his tonsils out!! He really was an absolute star.
We were advised that days 3-5 would be the worst for him once we returned home. On day 3, the Friday, he was really suffering with pain so he had some oramorph and he seemed to settle by the afternoon. It was not a great morning! Over the weekend, he was eating and drinking as normal and had no signs of infection. He never once complained, he truly is an inspiration. And he has slept through every single night! His brothers have also done an amazing job of looking after him!
Whilst we didn’t have the best experience at Sheffield, as usual I find myself reflecting on it and extracting the good things from the situation. it’s cemented in my mind what I already knew; that Hugo is an absolute diamond he can tackle this condition all the way. He has a huge mountain still to climb throughout his life, but I just know he will do it with pure grit and determination right to the very end. So incredibly proud of him. It’s also reminded me just how far Danny and myself have come in 8 months and I am very proud that we have made it this far. It’s made me realise just how strong we are as a family unit.