As expected, no one really managed to sleep the night before Danny’s stent enlargement. In the end I got up at 5am as it was more of an effort to stay in bed trying to sleep. I had a shower, breakfast and took my time getting ready before it was a decent hour to go and collect Rebecca from her room. At first this quiet time of day went really slowly and it seemed to take ages for the rest of the world to awaken. As a usually busy mum of four, it felt surreal to slowly sip a cup of coffee in complete silence and all alone. Then as the birds started singing and I heard the cleaners in the hallway, the hotel had woken up and time started passing quickly. I texted Dave to see if he needed me to bring anything in. He didn’t but mentioned they had started to do Danny’s pre ops, so I knew I had to get Rebecca and soon.
Rebecca and I walked through the bustle of Birmingham school children and workers to get to see our boy, our son and brother at Birmingham Children’s Hospital. It seemed strange to see people going about their ordinary lives and realising that my mum was at home doing the school run with my younger girls almost as if it was a normal day.
We were so relieved to get to the hospital before he had been taken into theatre. He was already in the theatre gown. The Ward gave him Velcro top and bottoms to wear but the theatre staff find the traditional gowns easier so he came back wearing that. As well as the usual checks, they asked if Danny had any questions. He asked would he be wheeled into theatre? They said, no, not if you’re able to walk- “You are able to walk aren’t you?” Danny laughed and assured them he was. They also reassured him that he would be wheeled back to the ward after the procedure (phew!).
The anaesthetist also checked what name he answers to ready for when they try to wake him up after the procedure. To be polite, “Danny said I don’t mind, you can call me anything.” I explained that he is mostly called Danny so that would be the best name to call him.
It was then time to walk down to theatre. This always brings me back to Danny’s very first open heart operation. I remember going straight up in the lift from PICU to theatre. From Ward 12, it’s just a short walk on the same floor. The first upsetting moment was when we had to leave Rebecca inside the first set of security doors. She had been allowed with us last time to say goodbye. I checked she would be OK and she insisted she would. I felt awful leaving her but had to be with Danny as he went to sleep. My tears started to come then but I held them back trying my best to be strong for Danny.
Anaesthetists are always so kind and caring. When they reassured Danny that they were going to look after him in theatre, it really reassured me too. Jokes were made, such as this being the only situation where a teenage boy will let his mum kiss and cuddle him before he goes to sleep. They double checked that he had been nil by mouth all morning. He confirmed that he had been. They said he could make up for that later when Mum and Dad would treat him. They asked, “Have you put your order in?” (meaning for nice junk food from us) but he said “Yes I did fill it in” talking about the hospital meal forms!
I gave him a kiss and cuddle and told him I loved him and would see him as soon as he was awake. They let us hold his hand and watch him get sleepy and fall asleep, then explained that it was time to leave him. At that point, as it always does every time without fail, the tears started flowing for me. This time I still tried to keep them in knowing that we had to go back to Rebecca. I said my sincere “thank you”s to the theatre staff and followed Nurse Maggie back to Rebecca. On the way she said kindly, “It never gets any easier, does it?” We thanked her and she promised she’d ring as soon as there was news. We picked up Rebecca, gave her a big hug and made our way out of the hospital. I had to let out these tears so popped to the toilets. They were empty on arrival so I let out all my tears, took deep breaths and came out once I was feeling slightly calmer. Unfortunately a queue had formed in this time. I could hear people saying, “If she doesn’t hurry up, there will be a puddle on the floor.” I felt so bad and now also slightly embarrassed to leave the toilets. I did and seeing my state, everyone looked down to avoid my gaze. I said “Sorry.” washed my hands and returned back to Dave and Rebecca.
The plan was to go out, have breakfast, as Dave hadn’t eaten, then shop for presents for Danny. We went to Wetherspoons again as we needed to stay close to the hospital. We ate our breakfasts then made our way to the Bullring.
We looked around the shops but hadn’t had time to choose him a present when my phone started ringing, my heart jumped, but it was just Danny’s school ringing about parents evening. Unfortunately, while they rang us the hospital rang too. They left a message, just asking us to return back to the hospital. I was so scared now as it didn’t say if he was OK or not. Just to come back. I kept listening to the message trying to check the tone of her voice for clues. As we were on our way back they rang Dave too, thankfully he answered and we had our reassurance that Danny was OK.
The relief quickly passed through my body and my legs were suddenly weak like jelly. The walk back to the hospital was hard. I couldn’t wait to get there but it felt so hard to keep putting one leg in front of the other. Finally, we were back and made our way to the ward. I paced as we stood by his empty bed (sob) waiting to be allowed to see him in recovery. The nurse came and took us there.
It was such a relief to see my sleepy boy. The recovery staff told us that he had been the perfect patient and so polite from the moment he came around (we’re still not sure what they did to him during the procedure to make that happen!). Again we gave everyone our sincere thanks. I can never thank the nurses, doctors, anaesthetists and consultants enough. I am eternally grateful to them. We all helped to hold doors as Danny was wheeled back to the ward.
On arrival next to his bed, the staff went through the usual transfer procedure, aiming to move Danny themselves. He then gave them a big shock when instead of relaxing and waiting for them to move him, he somehow flung his body and quickly transferred himself to the bed (thankfully without hurting himself). We all laughed for a good five minutes out of relief more than anything.
Once back to the ward, Dr Stumper came to speak to us. Everything had gone well and they had managed to do the procedure all by Cardiac Catheter as planned which was a huge relief. When they investigated his heart during the catheter they found another narrowing so as well as enlarging the stent, they also had to make bigger holes in the access points to put in a new bigger stent on another narrowing of the heart. This was no real problem, it just meant that Danny was in a bit more pain than planned (sorry Dan!) and recovery would take ever so slightly longer.
Danny slept lots to recover.
Sometimes he was in a deep restful sleep.
Other times he was restless and disturbed as the anaesthetic worked it’s way out of his body. He often asked for water, so we would give him a sip. He felt a bit nauseous so we got him a sick bowl. Thankfully, it wasn’t actually needed.
We sat alongside him for hours. Dave read. I messaged my family and looked at his photos. Rebecca ate, played, chatted.
I took Rebecca down to the playroom for a change of scenery.
She then asked to play her favourite game, Monopoly. My heart (and mind) weren’t up for it (such a long game isn’t the same without Christmas drinks and a bowl of sweets!) but I agreed to keep her occupied. As we were well into the game, a mother asked if her daughter could join in too. Of course we willingly agreed. She was too young to be aware of all the rules but we let her choose a piece and take turns to roll the dice and helped her move around the board. Her mum asked what was wrong with Rebecca and I explained that she was just in visiting her brother. She explained that her daughter had lots of tumours and was due a heart operation in a few weeks. We talked about Danny’s previous heart operations and how good the hospital is. After a few turns the daughter was bored of this fairly grown up game so thanked us and asked to go back to the play room. I wished her daughter well and she wished Danny well. At least we kept them amused for a short while, but they’ll be in my thoughts lots in the next few months.
Danny woke up and asked for some food, so we offered him the food that had turned up earlier. He ate a few bites but that was all he could manage.
We knew he was getting on the mend when he asked to play on the Xbox! I’m not keen on him playing on computer games too often, but in hospital I was glad of this to keep him amused.
We then had to move to a different bed in the ward. We moved and settled Danny there. The original plan had been for Danny to get up in the afternoon but initially he was too sore and weak. When Dr Stumper and his nurse assessed him, they said he still seemed a bit spaced out from the anaesthetic so it would be best for him to stay in bed longer and postpone getting up until the following day. This spurred Danny on and he decided he wanted to get up. He was still feeling really uncomfortable and in pain at times and at one point moodily said to me, “I just want pants on.” As soon as he’d said it, we both laughed at the absurdness of the situation. But on a serious note, I could understand exactly how he was feeling and what that simple statement meant.
He asked Dave to walk him to the toilet for his first walkabout. We did joke that he looked like Luke Skywalker in his dressing gown robe. The first time you get up after anaesthetic is hard, you never know how you’ll feel or what you’re ready to do until you try it. I remember after Danny’s third open heart surgery he asked why all the muscles had left his legs.
I think this photo sums up well post surgery recovery. Danny closes his eyes in pain, while Dave tenderly prepares him for getting up.
Thankfully he managed. First he went to the bathroom. Then he was even well enough for a walk to the playroom.
Danny was really good with the younger kids in the ward. Despite not feeling well, he would wave to them as they passed and gave him a wave. He gave them thumbs up and high fives if they came to his bedside. Seeing the younger kids toddling up and down the ward with their parents reminded me of Danny doing the same too.
In the playroom there is a lovely cosy den to watch tele.
Danny’s tea arrived and he ate a little. Dave and I realised that we hadn’t eaten since breakfast either. Ceri wanted to see Danny so we asked if they would sit with him while we got food especially as Dave would be staying at the hospital again. They agreed and I think Danny was glad of a change of company. Rebecca said she would eat later with Ceri.
We popped to Pizza Express. They do a vegan pizza! They will also use your own vegan cheese if you bring it in but of course I wasn’t that organised. The only problem with going to Pizza Express was it seemed to take ages and we wanted to hurry back to be with Danny (it wasn’t particularly slow it just wasn’t the best place to eat in those circumstances). The food was of course delicious though.
We headed back to the hospital and I realised that Lexy, Ceri and Rebecca would also now need to eat. I should have said my goodbyes to Dave and Danny and gone with them (company wise, not to eat) but said I’d stay at the hospital with Danny while they went to eat then head back to the apartment with them.
I sat with the boys for an hour then started getting Danny ready for bed. Of course all the parents on the ward start going to bed too and as only one parent is allowed by each bed I felt really in the way and conscious that the hospital doors gets locked at ten (you can still get let in and out by security but I didn’t want to do this when I didn’t need to).
I knew they wouldn’t be too long so I decided to wait in the lobby. Then they started clearing people from the lobby so I sat outside (I needed the fresh air anyway). Then it began to rain and got really cold. It began to feel like I’d been waiting longer than I had so I was worried about Ceri, Lexy and Rebecca and doubting myself about our plan to meet up. Thankfully I then heard from them and they were on there way.
We walked back to the apartment together after another long day. I felt partly ecstatic that Danny had done well (the stent enlargement had taken place and he was fine) and partly exhausted after such a long, emotional day. I didn’t even take note of the way we walked home, I just blindly followed Lexy and Ceri. This was another time that I appreciated them being there for us.
The day I had dreaded for months was over. Danny’s stent was enlarged and as always he had been in the best possible hands. Thank you so much Dr Stumper, all the anaesthetists, nurses (especially Maggy), play specialists and all the staff at Birmingham Children’s Hospital. You do an amazing job!
Also a huge well done to Danny. You are so brave and amazing. I am so proud to be your mum and love you so, so much!
It’s not over for us. Danny’s heart will never be “fixed” but another hurdle has been cleared and we just need to keep on running and enjoying life until we come to the next one.