We made our way to Birmingham children’s hospital on 14 August 2018 by train. My daughter Skye was feeling anxious but we managed small talk to take our minds off what was to happen that day.
My 15-year-old daughter Skye has Crohn’s disease, we found out 3 years ago. Her Crohn’s had come out of nowhere and her journey had been a very painful one. She’d had a Stoma bag for a year and with regular infliximab (Crohn’s medication) infusions this had kept her condition under control. During the year with her Stoma bag she had gained weight, was able to eat anything and all was well.
Skye’s Stoma bag was only temporary, Skye was desperate to have the reversal, being a teenager with a Stoma bag hadn’t been easy. After lots of tests, scope, scans and talks with her doctor and surgeon the decision was made, it was the right time for Skye to have a Stoma reversal and hemicolectomy operation. A hemicolectomy is a type of surgery done to remove part of your large intestine called your colon. The operation was to be done through Keyhole, fewer scars and quicker healing.
We were told to be at the hospital for 12 midday, we would find out the time of Skye’s operation when we arrived. We arrived half an hour early and waited until we were seen. A lovely nurse went over everything with us and Skye had observations to check she was well enough for her operation. We were told that her operation would be around 3pm and would be called up to ward 9 once the bed was available.
Time went slow, I tried to talk and keep Skye’s mind busy with fun happy things but I could tell she wasn’t really listening and her anxiety was at its highest. I was nervous too but I didn’t show it and worked my hardest to look confident. Then the nurses said it’s time to go, the bed on the ward isn’t ready yet but your surgeon wants you ready.
Those words,” it’s time”, made me feel sick to the stomach and Skye looked horrified. I can’t really remember how we got to ward 9 or anything the nurse was saying as I couldn’t concentrate. I managed to ground myself when we arrived at Ward 9 to get Skye all gowned up and ready. We had to meet with the anaesthetist first to discuss pain relief and listen to the scary, what may go wrong chat. He encouraged us to choose Ketamine and fentanyl for pain relief as he said it was more successful than morphine for Skye's type of operation. I was horrified at the thought of my daughter having these drugs but she needed pain relief so I had to trust him.
Skye’s surgeon who is one of the loveliest guys I have ever met came in to find Skye and made us both feel at ease. The nurses were so busy he had to go and get her a gown and her stockings himself. He moaned and joked about it making us both laugh and feel more at ease. Poor Skye had to change in a toilet as her bed still wasn’t ready. Her surgeon waited outside and walked with us to the anaesthetic room.
Once inside Skye’s surgeon went out to get ready for her and promised me he’d take good care of her. He is the kind of man that makes you feel safe, he’s confident but warm with it. The nurse and anaesthetist in the room with us were all so lovely and although Skye hates being put to sleep we managed to make her go off laughing. I then had to leave her, it’s never a nice feeling to walk away from your child, anyone who’s been through this will know exactly what I mean.
I was told that the operation would take about two and a half hours then another half an hour in recovery before I could go and get her. I rang my husband, Skye’s dad and told him what time to come. He wanted to be there for her when she woke up. He arrived just before 7pm I had managed to pass some time by editing my holiday video. It was a nice way to take my mind off what was happening to Skye, watching her on video.
7:30pm and I started to get anxious, I went and asked the nurses if they had heard if everything was ok. They reassured me all was well and they said they would call me soon as she was ready to be woke up. I calmed myself down but by 815pm I started to worry, why was it taking so long? I sent my husband to ask, they said she was still in recovery and not too long now. Time went so slow, all sorts of things were going through my mind. Then at 9pm, we were finally able to go and see her. She was still sleeping when we went into the recovery room. The room had nice music playing and felt calm, she looked peaceful, I kissed her forehead and told her how much I love her. She didn’t stir and was fast asleep. The nurse had to disturb her to check she was ok, she answered yes I can hear you but I could tell she just wanted to sleep.
Skye didn’t even remember being wheeled to Ward 9. She opened her eyes a few times to check we were both with her but just went back to sleep. About 10pm Skye’s surgeon came to see us, he explained that her operation had taken longer because the inflammation around the diseased area had burst, making it messy and having to clean it all up before he could remove the area. The diseased area was bigger than he’d expected but he explained that it was still a good cut and everything went back together perfectly. He said it in a very confident reassuring way, I was worried but I trusted him. He also explained that it would probably take longer to heal than expected and would be a bit more painful once Skye’s anaesthetic had worn off. He told me to try and get some sleep tonight as tomorrow night would be an uncomfortable night for Skye and she would need me.
When he’d gone, I and my husband just sat in silence for a few minutes, just looking at Skye and taking in what her surgeon had just said. The thought of her operation and all of that going on when we were just sat here waiting made my stomach turn. Poor Skye, having to go through all of this, I wish I could take it away for her, l would have this disease for her if it took it away from her. I kissed her forehead about a million times, my husband cuddled me and we both had a quiet cry. As it was now 10:45pm I told him to go home and try to get some sleep. I promised I would try to.
That night Skye slept and was asleep the next morning hardly blinking, not moving much and only stirring when the nurses came to do her observations. I tried so hard to sleep but I just couldn’t, I was in desperate need of a coffee but I didn’t want to go and leave Skye, in case she woke up and wondered where I was. When one of the nurses came to do Skye’s observations, I dashed to the parent's room to make myself a strong coffee to help me wake up a bit.
All Skye’s observations were fine, the nurse said that Skye needed to try and have a few sips of water every hour. The nurse also spoke to Skye and said that she needed to try and sit up and move about a little bit. Skye looked horrified when the nurse left and cried, I shut the curtains around the bed to give us some privacy. I managed to calm Skye and she talked to me a little bit and told me how she was feeling. She was really sore, her back was really hurting and her insides were really stinging. I encouraged Skye to sit up slightly and helped her move up the bed a bit, this wasn’t easy and it took a while. The nurses had spoken to Skye and encouraged her to press her button for pain relief when I’d gone to make my coffee. Skye had hardly pressed her button to release the drugs into her system, she hadn’t needed it much because of the anaesthetic but now it was wearing off she needed some relief. I encouraged Skye to press her button to help herself, after 5 minutes Skye was asleep again.
Skye’s dad came in with her brother Zac around lunch time. Zac kissed his sister and told her how much he loved her, I then encouraged Zac to come to the play centre with me and left Skye’s dad with Skye. It was the only chance I was going to have to see Zac until Friday, I knew how worried Zac had been about Skye going to the hospital, he needed me to. We had a lovely couple of hours together playing, we made our way back and Skye was still sleeping. I went and had something to eat and a shower. I then had time to organise the hospital room a bit better and filled the parent fridge in the parent's room with some microwave meals and snacks. I was going to be on my own for a couple of days as my husband had to work. I sadly kissed goodbye to my son Zac and my husband Kerry. Four hours at a hospital was long enough for Zac, some of the other children were in pain and I could see Zac getting upset. Skye didn’t notice when they left and was completely out of it most of the time when they were there.
Things started to get worse that evening, Skye complained about her back, she looked in agony and was crying out in pain. The doctors and the pain management team came out to see Skye that evening. They told her that she’d hardly had any of the Ketamine and fentanyl and encouraged Skye to press her button more as it would help her with the pain. Skye had been worried that she’d overdose if she pressed it too much, they promised her she wouldn’t be able to do that as it would only give so much within a certain time frame. After a few presses Skye got worse and vomited several times, it was green, and it hurt her so much when she was sick. I pressed the button for the nurse, no one came, poor Skye was crying and covered in sick. I couldn’t leave her in a state so I had to wait and just stroke her head and reassure her everything was ok until 25 minutes a nurse appeared.
The nurse called a doctor to come, whilst we waited for the nurse and I managed to clean Skye up and get a new gown on her. This wasn’t easy at all, Skye had a cannula in her right arm with 3 wires pumping medication into her veins and also a catheter. To make things worse the room was so tiny there was hardly room to swing a cat in there. The machines that all her medication was attached to were massive and we somehow had to get this gown off a very distressed teenager that couldn’t move. How we managed I will never know, year’s of experience from the nurse and my previous 2 years hospital hell with Skye had taught me how.
Shortly after we had managed to make Skye more comfortable the doctor arrived. She explained that green sick was to be expected for a few days after an operation and was perfectly normal. Apparently, it was all the scar tissue waste being released from her body. The doctor wrote an extra drug up for the nurses to administer (anti-sickness) and asked the nurse to keep the next bowl of sick for examination. The doctor also questioned the nurse as to why Skye hadn’t had her blood checked yet. The nurse said she would get on it and Skye and I were left alone again.
I encouraged Skye to have a sip of water to wash away the nasty sick taste. Skye didn’t want to talk, she looked so unhappy, scared and sad. I tried to cheer her up, nothing I could have said or done would have made any difference. She was in too much pain to talk, the nurse then came in and gave Skye some anti-sickness medication through IV, the nurse pressed Skye’s pain relief button a few times and finally, she settled and went back into her drugged up uncomfortable slump on the bed and fell asleep.
I had to go toilet, I was desperate for a drink, I ran and grabbed a jug of water for the night and quickly went to the toilet. I then struggled to pull my camp bed out in the tiny space and set up for the night. I was exhausted, the hospital was quiet for once, I struggled to switch off, too many thoughts were going through my head. After what felt like forever I must have gone to sleep but not for long, Skye screamed my name and I shot up, I grabbed the sick bowl and pressed the button to slowly lift her bed. Skye filled 4 bowls of sick before she went back to sleep. I went and weighed them for the nurses and emptied them in the sluice. I kept one and stuck a sticker on with all Skye’s details, I knew where everything was and how to do everything on this ward. I had spent 2 weeks here with Skye last year.
All throughout the early hours of the morning, this pattern continued. Skye slept but not properly. The drugs made Skye out of it but Skye wasn’t sleeping peacefully. After a couple of hours, Skye would be in terrible pain for about 10 minutes which was very distressing until she would vomit. Once Skye had vomited she would slump back on the bed and close her eyes. This pattern continued throughout most of that day When the doctors came and examined Skye they decided to try another anti-sickness medicine along with the other. They were now concerned about her sickness, more was coming out that was being put into her by IV.
Poor Skye was having Ketamine, fentanyl, paracetamol, IV fluids, two anti-sickness and antibiotics going through her vein through IV all day. Skye was so drugged up, it was concerning, her eyes were rolling and she could hardly talk. My strength and all the positivity I had been keeping to help Skye feel at ease was starting to go.
I was checking constantly with the doctors and pain team that she was ok and not overdosing. I made the nurses explain how the machine worked so I could read it myself. The things I’ve had to learn over the last 2 and a half years since Skye’s diagnosis with Crohn’s disease, makes me like a nurse. The nurses are so busy, it’s scary, as a parent you have to take it upon yourself to know what to do. Survival for your child is a must in hospital, gone are the days of leaving them and expecting the nurses to be there for your child.
The nurses are lovely and good when they are with you but they simply cannot come running when they are with another patient. All of their patients are usually quite serious, if they are helping them when you press the button they can’t just drop them and come rushing. You can also guarantee that all the patients seem to have their awful moments together, it’s one nurse to four patients, most of the time they have to help another nurse also. It’s absolutely ridiculous, I feel for the nurses, but I fear for the patients too. I’ve seen two patients die in the last 2 years due to lack of care, this will haunt me forever.
It was day 3 after Skye’s operation, she wasn’t drinking or eating, wasn’t able to move and looked completely out of it. This was not what we expected, I started to think something had gone wrong. I didn’t let on, I kept positive and kept telling Skye that once she’d stopped being sick she’d start to feel better. I also tried to encourage her to move a bit more, have some sips of water and press her button less. The doctor had said she needed to sit up, it would help with her sickness and take some pressure off her lower back. Skye tried so hard but struggled to even lift her head, the drugs were not helping her and she had no strength. Ketamine is a horse tranquillizer, how the doctors expected Skye to sit up when she was tranquillized, she simply couldn’t. I pushed for the pain team to come and see us again.
After a couple of hours the pain team came out, it was now Wednesday evening. I explained that I felt she couldn’t move as she was too drugged and they agreed to lower the dose of the Ketamine but kept the fentanyl the same. I asked if they could change her pain relief to morphine, Skye had morphine with her last operation and she hadn’t been like this on that and was up and moving after one day. They advised against it as they said it causes constipation. and would slow Skye’s bowels down. I knew this already but said that if she wasn’t able to stand up and get her bowels going, this would happen anyway.
Movement and being able to drink and eat would get that going, the drugs Skye was on were completely stopping her from being able to do that. I was tired and getting quite cross, I wasn’t nasty to the pain team but they could tell I was getting desperate. Poor Skye could hear everything we were saying, because of her age everything has to be discussed in front of her. I pretended to be positive so Skye would feel at ease. I agreed and reassured Skye that having less Ketamine would help her be able to move, I wasn’t sure this was the case though. Skye got angry with me and said it hurt too much to move, she didn’t want the pain relief reduced, she was scared it wouldn’t be strong enough to take the pain away. The pain team said that they would slightly increase the Fentanyl to help and promised Skye they would be back if she needed them and they could try something else.
The new anti-sickness Skye had been taking wasn’t stopping her sickness at all. Skye continued to vomit until nothing was left. It was a vicious circle, the IV fluid would build up over a couple of hours, then it would all come out again. This reminded me of her time with her Crohn’s disease before she had a Stoma. I know Skye was feeling like it was all happening again, we both felt scared that the operation had failed and her Crohn’s was back. I pushed the negative thoughts aside and pushed on through, I promised Skye that it would all work out in the end.
The doctor came out early Thursday morning and was very concerned with everything that had been happening. He arranged an X-ray and stopped all Skye’s anti-sickness medication. He also asked the nurses to stop the IV fluids for half a day. Skye promised she would keep sipping water to keep hydrated. Skye slept most of the morning and hardly pressed her button. She also stopped being sick. I managed to eat and quickly had a shower. One of the other parents that I had become close friends with keeping an eye on Skye for me. I knew she would come and get me if Skye started being sick again. We continued to help each other like this throughout our time in the hospital.
Early afternoon Skye was called and we made our way to the X-ray room. Skye was wheeled on her bed, the nurse gave Skye some medication to help her relax before. It wasn’t going to be easy to get Skye moving for her X-ray. When in the room there was me and three other nurses we all managed to lift Skye to slide the board underneath her. I had to wear a special gown so I could stand with her for the X-ray. I nearly couldn’t hold myself up it was so heavy, I realised how tired and weak I was at this point. There were tears from Skye and she was in terrible pain throughout but it had to be done so I kept myself calm. I was glad when it was over and we were back on the ward.
Half an hour after we were back Skye started to struggle again, she complained of terrible stabbing pains in her back and sides. This pain increased over the hour, it didn’t stop and I expected Skye would be sick again any minute and then the pain would go, like before. However this was not the case, her pains were increasing rapidly, tears were rolling down her cheeks, she looked at me with desperation in her eyes, I started to panic and pressed the button for the nurse.
No one came, Skye started to scream, she also started to arch her back, she begged me to make it stop. I just kept rubbing her back and telling her the nurse was on her way. The other parents and children on the ward also started to panic, the atmosphere was awful, where were the nurses. One of the parents arrived at my side with the nurse. She held my hand and I had to find all my strength to stop myself from crying. Skye was watching me, any sign of panic from me would have made it worse. The nurse took one look at Skye and said she was going to get a doctor, she ran off and left us again.
Skye’s screaming turned to shouting, “help me, I want to die, make it stop, help me please!” Her face was white and full of pure horror, that look will haunt me forever. I didn’t know what to do, I just wouldn’t leave her. I asked the other mum to go and get some more help, she ran off but as she did Skye suddenly threw herself back, right to the back of the bed, her arms went all floppy but her legs were shaking, her eyes rolled right to the back, all I could see was the whites of her eyes, then her tongue rolled to the back of her throat and she started to choke. I reached forward with all my force and put my hands around her neck to bring her forward.
Skye was choking on her vomit, she had pushed her head right back and I struggled to get her forward, she was fitting against me and pushing herself backwards. All of a sudden a nurse appeared and helped me, we both managed to bring her forward so she could be sick. Skye was violently sick everywhere, this time it wasn’t green but dark brown and red. The nurse waited with me, both of us completely speechless just focusing on Skye’s breathing, waiting for her to regain herself again.
The nurse looked at me and said very calmly, “I’m just going to get some gloves on so I can help you remove the sick and clean her up”. I couldn’t speak, I was in shock, no words would come out of my mouth. I felt faint but I certainly wouldn’t let myself faint, there was no way I was leaving my daughter after what had just happened, not for a second! It then dawned on me, if I hadn’t been with her she would have probably died. I suddenly felt very scared, the tears started rolling down my cheeks, I couldn’t stop them.
Skye was just staring at me, she cried too, she told me to stop, it’s making me hurt she told me quietly. I couldn’t stop, I wanted to scream, I suddenly felt very angry. What was going on, I wanted answers, where was the nurse, why was it taking so long to get some gloves?, why was I left alone again? did they not realise my daughter nearly died.
The atmosphere was tense, my daughter started to cry, “what’s happening to me?”, she asked, “why am I not getting better?” This made me cry. The nurses asked me to come into the office for a chat, they could see I needed a breather. I didn’t want to leave Skye but they promised they would stay with her when I went. One of the younger nurses took my hand and we went to the office for a chat. Once inside I broke down and the nurse hugged me, I was shaking all over, I sobbed for 5 minutes until I calmed myself down. She asked if I wanted to file a complaint about what had just happened, I didn’t, I just wanted to get back to Skye and make sure she was ok, I wanted my daughter's pain to stop.
Once we were back, I pulled myself together, my daughter's pain had started again. A doctor and a man from the pain team arrived. They asked me what had happened, I explained whilst crying, I was shaking like a leaf and kept stuttering. They listened carefully and the man from the pain team stopped Skye’s pain relief instantly. He said that she could no longer have Ketamine and explained that it had caused a seizure. He then suggested to try Skye with some morphine, Skye needed something so I agreed, I didn’t want another episode again.
Skye had some liquid morphine that she took orally, a few minutes after taking it she broke out in a purple rash. I watched the rash move up her arm, in a few minutes it developed quickly. I recognised an allergic reaction to the morphine. I didn’t waste no time, I went to my drawer next to Skye’s bed and pulled out an antihistamine tablet. I had been taking them for my hay fever. There wasn’t time to argue with the nurses, they probably wouldn’t have got one in time. I just gave it to her and within several minutes my daughters rash had gone.
The man from the pain witnessed everything, he agreed to keep Skye off the morphine and gave Skye a low dose of fentanyl for her pain. He got her IVs and pain button set back up and Skye started to relax a bit. I made the doctor and nurse attach her heart and pulse rate monitor to her. I asked what I should look for in case Skye had another seizure. They all apologised for what had happened and promised that a nurse would come straight away if I pressed the button again. Skye calmed right down and after half an hour Skye was sleeping peacefully.
When Skye was sleeping the nurse that had taken me into the office came to see if I was ok. She brought me a jug of water and asked if she could get me anything. I asked about the nurse who had helped me, I wanted to thank her for coming to help. I explained what she looked like. She must have been a student because she was wearing a white uniform. The nurse went to find out for me but after 15 minutes came back and apologised, nobody knew who she way. They said she must have been from another ward and just passing by for some reason. I was just glad she had been there, could I have pulled Skye forward on my own?
That night I didn’t sleep, I just watched Skye’s heart monitor, it was all over the place for about three hours till it settled down. The man from the pain team had said it would take a couple of hours for the Ketamine to get out of Skye’s system. I could tell when it had gone, her heart rate went back to normal and her eyes stopped rolling when she was sleeping. I relaxed a bit and started to close my eyes, I was exhausted.
I’d not been asleep long when Skye shouted for me, I instantly jumped up. Skye felt the need to open her bowels, I ran to get the commode. Skye managed to get herself on it, it wasn’t easy with all wires everywhere attached to her and such little space, but she managed. This was such a big relief for her, it wasn’t too painful. I then got her back on the bed and called the nurse to come. The nurse was over the moon, this was a good sign, things were working, the operation must have been a success, hopefully, everything would become easier.
Throughout the day Skye emptied her bowels. It was exhausting for her to keep having to get up and go but the pressure on Skye’s spine eased and although still in pain because of the operation it wasn’t anything compared to what it had been. Skye had her catheter removed now she was able to go to the toilet and also stopped having the fentanyl that evening and just had paracetamol.
That night we both slept much better, we were both absolutely exhausted. In fact, Skye had to throw something at me to wake me up to help her go to the toilet. She’d been calling me and said I just wouldn’t wake up. I think all the sleepless nights had got to me. I looked like a zombie that night running across the hospital corridor to take her waste to the sluice. It shouldn’t have been my job to empty her waste but the poor nurses were so busy, I just got on with it. I certainly entertained the nurses that evening when I ran along the corridor with my shorts pyjamas sticking up my butt. I was so tired, I hadn’t realised. This did make us all laugh though, this was the first time I’d laughed all week. I emptied her waste several times that night but managed to sleep in between.
The next day I asked if the X-ray results were back. I wasn’t really worried anymore but I still wanted to check all was ok. The nurses were trying to encourage Skye to eat and I wanted to check the results first. The X-ray showed that Skye’s intestine had been twisted. The fact her bowels were now working meant that it had corrected itself. If it hadn’t Skye would have needed another operation. That’s why poor Skye had been in so much pain, her bowels were trying to work but because of the twist, they couldn’t pass it through. If Skye hadn’t been on ketamine I’m sure she would have been able to get up and move a bit. The movement would have helped her intestines to twist back to their original state. The seizure had made Skye move, I think that’s when her intestines had unravelled themselves.
Every day got easier after that, Skye didn’t eat much but she started to drink. After a couple of days, they stopped Skye’s IV fluids and her antibiotics. Skye was drinking enough water and having tiny amounts of food. Skye had a long way to go but after seeing her surgeon again, he thought the best thing for us both was to go home. Now Skye was off all medication it was just a matter of time and healing, he thought Skye would heal better once at home and she promised she would eat better once she was home. We had a number to contact if we had any concerns once we were home.
We were released the Monday morning, I can’t believe we’d only been there a week, it had seemed like forever. It wasn’t easy to get Skye to walk to the car, she had to walk, the nurses encouraged this. Skye felt sore and weak and the hour journey home in the car was uncomfortable for her. When she got home she was sick, this worried me and I thought we would be going back to the hospital. Luckily Skye wasn’t sick again and slept more comfortably in her bed. I slept like a log that night, it was wonderful to be home.
Skye has been improving every day, she’s not eating a great deal but I know it’s going to take time for her to heal. Our experience has affected us both mentally, hopefully, the horror will pass over time. It’s been hard for me to write this post, I’ve cried a lot as it’s made me think of everything that happened. I don’t want to scare anyone with this story but I really need to say two things;
“Don’t leave anyone on their own in the hospital if possible, especially children”.
Could the NHS come up with an app that makes the nurse's jobs easier? Handover takes an hour, the nurses ignore their patients for that whole hour while they fill in paperwork and discuss their patients with the new nurse. This time is usually between 7-8pm when everything seems to go wrong and people die. Surely with all the technology we have nowadays can’t the nurse's record through their voice and it to be transferred to the patient's record through an app. The nurses don’t have enough time to do their job let alone fill in paperwork all day. This could save lives.
What do you think?