Yesterday was a good day – Owen did not need to visit a hospital, for the first time in 63 days! The last few months have been pretty rough for all of us, especially Owen. He was in hospital for almost three weeks, then has been on “home leave” for 23 hours a day for the last six weeks, but needed to return to the hospital daily for intravenous antibiotics. He has not actually been discharged yet, but as he has been told he can stop the antibiotics, we are classing this as a win! This blog post may seem a bit disjointed, as it has been updated over the space of a few months, often at times when I was quite sleep-deprived. It was mainly written so I can look back on what happened, especially if Owen has questions in the future.

We think it all started at the end of September, Owen was falling over a lot – even more than usual. Enough that I was concerned enough to think I needed to call the doctor. However, Henry became ill, with whichever respiratory illness was going around school at the time, and we thought nothing more of it. Whilst Henry was off school, Owen had his flu vaccine and then became quite poorly. The boys were meant to spend the weekend with my parents, as Jen and I had a night out planned, to see Jo Whiley DJing in Coventry, so my mum came to stay and look after the boys on the Friday night, as Owen was too poorly to travel. His condition got worse over the weekend, he had a fever, was sick a few times and at points he was almost delirious. We still thought it was a bad cold or a reaction to the flu vaccine. By the Monday, he was feeling a bit better in himself but was complaining of sore hips. At this point, we visited the doctor, who suspected “Irritable Hip Syndrome”, but sent us to A&E to rule out anything more sinister. I dropped Jen and Owen off at the hospital and returned to collect Henry from school – then had to take him back to school for a meeting, which children were not really meant to attend. He was so good and sat quietly whilst the teachers explained to the reception parents that we needed to read lots with our children. By the time we got home from the meeting, Jen and Owen had finished at the hospital, so we collected them and all went to McDonald’s. The verdict from the hospital was that Owen had “Irritable Hip Syndrome” and a Urinary Tract Infection, for which he was prescribed antibiotics.

Owen’s health continued to improve, and he was back at school on Thursday, albeit with strict instructions to take things easy and to go to the office for his antibiotics at lunchtime. On Friday we had a nice evening watching Redbull Rampage and eating pizza with our friends Partho and Marilena, and their two sausage dogs. I had even managed to make a big batch of cookie dough for dessert. The rest of the weekend was quiet, we went for a walk in Millison’s Wood and I joined the Godiva Trail Riders for a ride around my usual loop. On Sunday Owen had the last of his antibiotics. By Monday he was back to normal, his hip was feeling better, so he rode his BMX to and from school. He even went swimming in the evening. Then, unbeknownst to me he woke up in the night feeling poorly. Jen was at the gym first thing in the morning and when he started playing up at breakfast, saying that he was too poorly to go to school I thought he was trying to get another day off. I told him that if was ill, he would have to go back to bed and stay there. Which he did, for the whole day, because he was actually quite ill. Wednesday was slightly better, he managed to make it down the stairs, to sleep on the sofa all day. By Thursday he still had headaches, although they were improving slightly. At this point, we called the doctor again and were directed straight to A&E.

Jen dropped Owen and I off at A&E and we were seen relatively quickly, although there was a bit of a wait to see the senior doctor. When we eventually saw her, Owen had decided that he did not have a headache anymore and that it only happened “at home, when my brother is annoying me” – I thought we were about to get sent home and had wasted a day, but thankfully, as it was Owen’s second visit in two weeks, she took it seriously and booked Owen in for a CT scan and some blood tests. By this time it was the evening, and Jen took over waiting with Owen. The CT scan showed something on Owen’s brain, which normally would not require further investigation, but given the headaches, an MRI scan was requested, and Owen was admitted to the hospital. Little did we know how long he would be staying in hospital!

The next day, Owen had the MRI and after it had been analysed, it was decided that Owen would be transferred to Birmingham Children’s Hospital for an operation the following day. There was some uncertainty if the infection/pus had spread from Owen’s sinuses into his skull, but either way, it was putting pressure on his brain and it needed to be cleaned out. Owen was also started on a course of intravenous antibiotics. Another CT scan was ordered, this time focussing on the sinuses. Henry and I were able to visit in the evening and deliver a McDonald’s before Owen had to stop eating in preparation for the operation. Owen and Jen got taken to Birmingham by ambulance – Owen’s first ride in an ambulance. However, it was not deemed to be a serious enough case for the lights and sirens to be needed. He was initially admitted to the “short-term surgery” ward, which sounded positive, but was then moved to the renal ward, as they had space, and there was no ENT ward. Whilst all of this was happening, Henry and I had a quiet morning at home, waiting for my mother-in-law to arrive to look after Henry and take him to a party, so that I could join Jen and Owen in Birmingham. Keeping things as normal as possible for Henry was going to be a big part of Owen being in the hospital.

By the time I got to Birmingham, Owen was ready to go into theatre for a FESS (Functional Endoscopic Sinus Surgery) procedure. He was able to walk himself to the operating theatre – bizarrely we had to go through an event, unveiling a new plaque, to get to the theatre, squeezing past photographers and dignitaries. This an article about who the plaque was commemorating. Jen and I were able to go with him to the anaesthetic room, which allowed me to meet the surgeons (Jen had already met them) and for us to be able to reassure Owen, who was getting quite nervous at this point. Owen went to sleep fairly quickly and Jen and I were left twiddling our thumbs, whilst the surgeons got to work. We went for a little walk around the block, but did not want to be too far from the ward in case Owen came back. In the end, the surgery was a bit longer than expected, as they fitted a neck line, to make administering the antibiotics easier. It was the evening by the time Owen came back from surgery – 24 hours since he had last eaten. And he was hangry! His nose also hurt, unsurprising as there had been a camera poked up it! As we were trying to sort him out with some food, the neurosurgeon came to visit us and gave us an update on Owen’s condition. I was impressed that he had gone into theatre for Owen’s procedure, even though it was being led by the ENT team, so that he could get a better handle on what the infection was. He also took the time to explain Owen’s condition – a bad sinus infection, which was putting pressure on his brain. Inside the skull, there is a membrane between the sinus cavities and the brain, but the surgeons were unable to tell from the scans if the infection had crossed this membrane yet. It seemed like we were lucky to have caught it early, as usually the first people know about it is when the patient collapses. In Owen’s case, they were able to treat it from the sinus side first, and monitor the brain side, rather than needing two separate operations. It also became clear that this would not be a quick road to recovery, with a long course of antibiotics required. The neurosurgeon said that he hoped to have Owen “home for Christmas” – bear in mind this was mid-October.

The neurosurgeon had also arranged for Owen to be moved to the neurosurgery ward so that they could keep a closer eye on him. On the ward, it became clear that Owen was one of the least poorly children there, which certainly put our situation into perspective. As difficult as it was being on the ward, the care he received was second to none. We quickly got into a routine on the ward, with Jen and I alternating staying with Owen and looking after Henry at home. We had to get into a routine because fourteen medical things had to happen each day, most of which the nurses left us to do:

• 4x sinus flushes – squirting a saline solution up his nose to rinse out anything, as he could not blow his nose for the first few weeks
• 3x thirty-minute intravenous antibiotic infusion
• 2x doses of anti-seizure medication
• 2x doses of nose drops
• Another thirty-minute intravenous antibiotic infusion
• A nose spray
• A wash with some special antibacterial soap

In addition to all that the nurses had check Owen’s blood pressure, oxygen saturation, temperature and neurological responses every four hours. And of course, he needed to eat and drink – which all needed to be logged by the nurses, along with any trips to the toilet.

I was surprised to meet the physio team, but I think it must have been a standard procedure for patients on the neurosurgery ward. They were happy that Owen was fine walking and using stairs, so discharged him from their care straight away. I raised that Owen is usually pretty active and my biggest concern was that he could be bed-ridden for months and that lack of movement may lead to issues, so the physio told us about the play centre at the other end of the hospital, which really changed Owen’s stay for the better! We had to get a nurse to do some paperwork each day that we wanted visit but once that was done, Owen was free to leave the ward and visit the play centre, albeit only the indoor facilities, as his neck line precluded him from going outside. Being able to get off the ward was great, Owen could stretch his legs walking down the long corridors and the play centre was the sort of things little boys dream of – a big room full of toys, musical instruments, games, video games and staff there to make sure you are having a good time! On our first visit, after initially trying out the drum machine, Owen gravitated towards the Lego, building a Lego hospital, which endeared him to the staff straight away, and as they could see he loves Lego he was given a Lego Minecraft set, supplied by the Fairy Bricks charity. We finished up our visit with half an hour on the PS4. The only downside to the play centre was that we could only visit in the gaps between our various commitments on the ward. So usually we could only fit in a few short visits a day, but Owen made the most of these visits! There was also a smaller playroom on the ward, which Owen could use when we did not have enough time to walk across the hospital.

One project that I have thought might be worth doing with Owen “one day” was to make a stop-motion animation, and a long hospital stay seemed to be the ideal time for such a project! I installed the Stop Motion Studio app on Owen’s iPad and we started experimenting with Lego characters on the table at Owen’s bed, quickly learning the basics and that we ideally needed something to support the iPad. When Owen had built the Minecraft “Abandoned Village” Lego set from Fairy Bricks, we realised that it would be perfect for a stop motion animation, as there were multiple characters and buildings. We found a quiet corner in the ward playroom, built an iPad support out of Megablocks and put our new-found skills into practice. Owen was rightly proud of the end result, showing all his visitors and any doctor or nurse who came to his bedside. This is the film we made:

Whilst in the hospital Owen also got a lot of Minecraft practice, I had planned to set up a Minecraft server on AWS so that Owen could play with his friends, but I could not get into the AWS console on the hospital WiFi. I got as far as setting up an EC2 instance using CDK, via the hotspot from my phone, but realised that it would be easier to pay for Minecraft Realms and get Owen playing as soon as possible. The only issue with Minecraft Realms was that Owen could also not connect to it over the hospital WiFi, so he had to tether to my phone to connect to that too. We invited one of Owen’s friends to the realm, and when we next logged in, his friend had been busy – he had built Owen a house, and left him with lots of supplies and some nice messages on the wall. It was so sweet to see how they interacted through the game. Owen’s friend’s mum also got involved, building herself a nice house and garden. The only downside is that Owen can only have one world loaded at a time, so I think it will be worth carrying on my project to get a server set up.

When we were driving to the hospital in Birmingham every day I noticed a billboard on the side of the hospital, highlighting their campaign to fund an iMRI scanner for the neurosurgery team. This would allow the neurosurgeons to be able to perform MRI scans mid-operation and ensure that they have removed all of a tumour, for example. Whilst Owen did not need brain surgery, it was the neurosurgery team leading his care, so this appeal is close to our hearts. The Birmingham Children’s Hospital Charity also do great work all over the hospital, including things like the play centre and running a Santa’s Grotto for patients.

After about a week on the neurosurgical ward, Owen was moved next door, to the gastrointestinal ward, as he was the least ill child on the neurosurgical ward and they had too many patients. Whilst it was good that he was considered the “least ill”, it was concerning that he was no longer on the neurosurgery ward. Other positives were that there was a bit more room around the beds, so it was easier day to day for us. And for Owen, the ward had a Nintendo Switch that he could borrow. Before Owen could be transferred back to the hospital in Coventry the last thing that needed to happen at Birmingham Children’s Hospital, was for Owen’s neck line to be replaced with a more durable “Hickman Line”, which goes into Owen’s heart, which is what you can see in the photo at the top of this post. This type of line means Owen can go outside and lasts for up to a year – although Owen should only need it for a few months at most! The downside is that it needs to be inserted and removed under general anaesthetic, meaning that Owen had to have a second, short operation, and still has another one to come in the new year to remove it.

Once Owen had recovered from his operation he could move back to Coventry, as a bed and transport became available. It was past Owen’s bedtime, on the day after his operation, by the time we were able to be transferred. As Owen was still awake we decided to get the taxi to Coventry, as it felt like a big step forward for Owen’s recovery and we did not want to risk waiting for more transport to be arranged the following day. When we arrived back at UHCW we were shown to our side room – after more than a week on wards it was nice to be in a quieter room with our own bathroom! It was also a nice touch that Owen had the same nurse looking after him who had looked after him before his transfer to Birmingham. And that she remembered him. We both had a good sleep in the room, but it was only in the morning that we learned Owen was in the side room to make sure he was not bringing any infections over from Birmingham. So the trade-off for our good sleep was that Owen was not allowed to leave the room. He did manage to borrow another Nintendo Switch from the ward play worker, so he did not get too bored between the various medicines and nose flushes. Being nearer to home also meant more visitors, so even though Owen was confined to the room, he as kept occupied.

Jen and I had a trip to Rome planned around this time, which we had to cancel. Fortunately, Henry was keen to stick to his part of the original plan – a four-night sleepover at my mum and dad’s house. After two weeks of alternating looking after each of the boys, it was nice to be able to have some solo time at home, to get jobs done and in my case get back out on my bike – it definitely felt like hard work after a few weeks off the bike, especially with much muddier trails.

On one of my bike rides I had a message from Jen, that as Owen was no longer in isolation in his side room, he could leave the ward and come home between his doses of antibiotics! I raced home, but Jen and Owen beat me, it was nice to get back to a full house though, even if Henry was not there. We had a quiet few hours at home, before I returned to the hospital with Owen for another round of medicines etc. The next morning we were able to come home again, and word had got out, so a few of Owen’s schoolmates called round to see him. Seeing his friends really cheered Owen up, as did his favourite dinner – Jen makes a great toad in the hole, but it must have tasted even better for Owen after a few weeks of hospital food! We also managed to squeeze in a quick Lego build, and a photo (the one at the top of this post) for the Lego #BuildToGive campaign – where Lego donate a set for the Fairy Bricks charity to distribute to poorly children in hospitals each time anyone shares a picture of a Lego heart on social media. Henry also got involved from Grandma’s house.

Jen took Owen back to the hospital – with an MRI planned first thing the next morning, the results of which would decide if the three times a day antibiotic could be stopped. Unfortunately, as is the way with these things, we were unable to get an answer from the doctors in time for Owen to come home, but the headline was that the size of the abscess had reduced. We were also told that we could stop the nose flushes. I took over from Jen, and the disappointment for Owen of having to stay in hospital one more night was somewhat reduced by him beating me at UNO. After he had fallen asleep the nurse gave me the good news that he was only due one more dose of the three-times-a-day antibiotic, which meant we could go home the following morning. Although, we would still need to come back each day for the daily antibiotic. Naturally, it still took some time for us to get all the paperwork completed for Owen to come home, so Jen came to join us after she had dropped Henry off at school. Eventually, at lunchtime, we were told that we could go home, and collect the paperwork when we came back in for the evening for his daily antibiotics. It was nice to be able to potter around together and to do a bit of Lego at home with Owen. And Henry’s face was a picture when he saw the three of us picking him up from school – he had really missed Owen. Henry had even promised that he was “not going to fight with Owen ever again”. However, that soon got downgraded to “I am not going to fight with Owen whilst he has his line in”.

On Owen’s first night at home, we had a bit of a scare, as he woke up screaming with stomach pains. Even though he was an inpatient, the ward told us to take him to A&E, Jen took him over, and it sounded like chaos, the ward where Owen had been was full, which meant A&E had nowhere to send patients, so they were also full. In the end Owen said he was feeling better, so Jen brought him back home, and we had a doctor check him over the next evening – and they said that they could not find anything wrong. He had a couple more episodes of this, but without the trips to A&E.

Although Owen still needed to go to the hospital for his daily antibiotics, having him at home, sleeping in his own bed (and us sleeping in our own bed!) and going to school was a big step forward. It did not take long for Owen to get back to his usual self, it was funny hearing one of his school friends saying it was good to have loud Owen back again. Even though things were getting back to normal, we still had to visit the hospital every evening for Owen’s antibiotics. It did not seem that the ward was set up to deal with longer-term patients on home leave, it was just a case of turning up every evening and seeing what happened, usually, we were put in a small side room, and sometimes Owen would be hooked up to the pump for his antibiotics straight away, other times we would have to wait for an hour or two, depending on how busy the ward was. Eventually, Owen was able to get booked into the day unit on the ward, four days a week, where things tended to run a bit smoother, Owen was usually their last patient of the day, so they were waiting for him. One thing that particularly annoyed us during this period was that we were paying at least £5 per day to park at the hospital, we applied to get a free parking pass, but the requirements were that you had to have at least three appointments a month, for three months. Daily appointments for two months did not cut it. It is madness that someone having nine appointments over three months gets free parking, but someone having sixty appointments over two months does not qualify!

In addition to the daily trips to Coventry hospital, there were also regular trips to Birmingham Children’s Hospital, for MRI scans, reviews with the consultants (both neurosurgery and ENT) and eventually an ultrasound scan to look for gallstones – a side effect of the antibiotics that Owen was on. Nobody had mentioned this at all, even when Owen was being checked out for the stomach pains he had been experiencing. It was only because a doctor mentioned it in passing. The scan showed that there were not any gallstones, but it did highlight the missing link in communication between the hospitals. Another example of this was when we were told that Owen would be stopping his antibiotics mid-November, which had been a date we were all focussing on, only then to be told that there were at least another four weeks to go, but as usual we just adapted to the new routine and carried on with it. It all seemed to be getting to Owen, as he had a few issues at school, he needed first aid at school most days, and it almost got to the point where he was going to be kept inside at break times, we are yet to get to the bottom of why, but anxiety about his line probably played a part of it.

Owen has not yet been officially discharged, from hospital, but after a review of his most recent MRI the neurosurgeons were sufficiently pleased with his progress that they said the antibiotics could be stopped, and that they would start the process to get his Hickman Line removed, which should be a day procedure. Until that happens, the dressing for the line still needs to be changed weekly, at Coventry hospital, but hopefully, that will be a quick job.

After seeing the neurosurgery team in Birmingham, we dropped OWen back at school, relieved that we would have a few days away from hospitals. Then we got a phone call from school… This time it was about Henry – “You need to take him to A&E?” He had bumped his face on a bench and split his nostril, so nothing major, but after thinking we would be avoiding the hospital for a few days, it was not ideal. Fortunately, it was a quiet day at A&E and Henry was seen quickly. He seemed fine in himself and was very well behaved waiting, he could probably sense how unimpressed I was to be back at the hospital. He mentioned to the nurse that he had bumped his head “but it is OK now”, so the nurse had to check him for signs of concussion. She also needed to get second, third and fourth opinions on Henry’s nose, so we were in there for a few hours. Eventually, they settled on a steri-strip to hold his nose together and a follow-up appointment with the ENT team when the swelling has subsided – another hospital trip. When Henry and I got back, we all went to KFC for a “traditional Japanese Christmas dinner” to celebrate. The next day, yesterday, we successfully managed to avoid hospitals!

This post ended up being longer than I planned, I guess that’s what happens when you have too much time on your hands your hands in hospital. The TLDR is that Owen had headaches for a few weeks, we took him to A&E, and they found an abscess in his skull, he was admitted to hospital in Coventry, and transferred to Birmingham Children’s Hospital for an operation to clear out his sinuses, then had a few months worth of intravenous antibiotics. He is making a good recovery and is now back home. Fairy Bricks gave him some Lego – donate to them! And the Neurosurgical team at Birmingham Children’s Hospital looked after Owen really well – donate to their iMRI appeal too!