What a whirlwind of a weekend! If you’ve been on my Facebook page you will have seen that Rubeon had an unexpected hospital admission this weekend.
For the past few weeks, Rubeons shunt area has been slowly increasing in size, and not flattening down as it usually would. It wasn’t until my sisters made a point of noticing it that I messaged the neurosurgeon about it. At the time, he was fine in himself. No lethargy, food aversion, sickness or a sudden increase in his head circumference (all signs of shunt failure) so I didn’t find cause for concern that his shunt wasn’t working, which is why I hadn’t brought it to attention before.
The neurosurgeon and I bounced emails back and forth last week, I sent photos of Rubeons shunt side, and with the particular shunt that he has, it was explained that it’s common for fluid to pool around it and disperse. (Which I’d already discovered when he’s unsettled or grizzly it would flare up and go down when he calmed down.) However my issue was this wasn’t dispersing, it was getting bigger. But because he showed no other signs of a malfunction the neurosurgeon and I were happy it wasn’t his shunt causing an issue and we left it with an arranged clinic appointment in May. Typically, I put it down to teething, as from watching William teethe I knew it was a long and uncomfortable process for them.
On Thursday evening, Rubeon was sick, nothing drastic. I put it down to him feeding on top of a wind bubble and thought nothing more of it. We had an unsettled night, and I’d forgotten about him being sick. First thing on Friday morning he was sick again. Full on projectile all over the bed. Again, I assumed he had another wind bubble and he was being a little piggy with milk.
The day went on, and Rubeon was a little grumpy, but no more than him on a typical grumpy day (again, I thought it was just teething!) and there was no more sick until later that evening.
Friday night Rubeon started to become more distressed and unsettled. We tried going to bed, but it was in vain. By 4.30am he’d been sick another 2 times and Martin made the call to take him to hospital. I rang my parents to come and watch William and Lily, and off we hurried to A&E. We hummed and haa’ed about which hospital to actually go to, with the decided assumption that his shunt had an issue, did we drive an hour to the Neuro hospital, or did we get immediate general help from our local hospital 5-10 minutes down the road. In the end I made the decision to go to our local hospital as I wasn’t happy with driving so far whilst Rubeon was being sick.
At the time, even though Martin and I suspected his shunt was the issue, I honestly thought we were going to be sent home and told that it was something viral, and his shunt was larger than usual because his body was fighting off an illness. (As I said, it would pool with excess fluid if he was unsettled or unhappy.) We saw the nurse and doctor in A&E, who were straight onto the phone to Addenbrooke’s Hospital (the Neuro hospital) and the next thing I know Rubeon was needing a blood test, urine test* and a CT scan.
Oh…it’s not viral then.
*and If you’ve ever tried to get a urine sample from a baby, you’ll know it’s a game of chance. I sat there blowing cool air onto his winky – and it worked! But silly me, didn’t direct the flow into the pot…cue wee everywhere except the pot.
I thought I’d missed my chance, but another strong blow of wind and holding the winkle in the right direction, we had a winner! (Honestly, who knew such a thing would have me dancing around the A&E cubicle!)
Once all the tests were done, Martin tagged out and went home to catch up on some sleep and my mum then joined us. We were taken up to the children’s ward about 8am where it seemed that the ball was rolling pretty swiftly and we’d know what was happening quite sharpish. Time went on, and we were still none the wiser. It wasn’t until after lunchtime we were informed that the CT scan pictures weren’t loading over at Addenbrookes, so for once technology was the hold up!
Eventually, it was decided we needed to be transferred over to addenbrookes and for a second time, Rubeon and I got to ride in an ambulance. We arrived around dinner time, and were taken back to the same ward we were on last time. I met with the neurosurgeon who explained that Rubeon would need an X-ray to check the positioning of all the shunt components, and from their initial consultation they would be draining (what they assumed was fluid) surrounding the shunt with a needle, and then checking the shunt was functioning at the same time.
I wasn’t expecting any tests scans to happen as we’d arrived late in the afternoon/evening, so we started getting settled in bed. It was becoming apparent that Rubeon wasn’t going to settle in the cot, and a wonderful nurse asked if we usually co-slept, and she made up an adult bed for us both to sleep in. (It ended up being cuddles as neither of us got much sleep!) I was genuinely surprised at this as I didn’t think they would let us do it, which is why I didn’t ask about co-sleeping. And even though we didn’t have brilliant sleep, Rubeon was still more settled on me than he was on his own in the cot.
I was absolutely amazed when we were told that Rubeon was going for an X-Ray at 11.15pm. I truly wasn’t expecting anything to happen when we got there, let alone so late at night! He screamed and cried during it, but it was our jackpot scan. About 2am I was told Rubeon would be nil by mouth from 5am as would be going into surgery first thing in the morning. (Definitely not viral…)
As it turned out, his swelling was in fact his shunt tube. It had coiled back up into his head. Normally, the tube would be all the way down into his abdomen! The doctors were stunned and had no idea how this happened, but it had, and it needed fixing fast as the fluid it should’ve been draining away was now being drained basically back into his head and neck.
Unfortunately, two emergency cases had come in on the Sunday morning, pushing Rubeons surgery back a few hours. We waited around (all the while with a grumpy and unsettled baby) and met with the neurosurgeon & anaesthetist who explained the procedure and risks with the surgery.
Whilst we waited for the prior surgeries to finish, I borrowed a ward pushchair and went for a walk around the hospital to settle Rubeon. (Godsend!!) Martin joined us in the morning and we grabbed a late breakfast in the food court.
Just after lunch time Rubeon was taken down to surgery, and Martin & I were left to twiddle our thumbs for a couple of hours. We went for another walk, then chilled out on the ward until Rubeon was in recovery. I had a lot of comments made about coping really well and being strong etc, but being there in hospital I felt the most at ease than I ever have been. I was surrounded by experts and trained staff who were helping my baby. I hadn’t realised how much I subconsciously worry about his shunt and hydrocephalus until I felt it disappear when we got to Addenbrookes. It’s something we can’t consume ourselves and our thoughts in as it’s a life-long issue he will always have, and we remain positive that Rubeon will lead a normal life. To think otherwise is just not an option, we won’t be the ones to limit him. But at such a young age it’s hard to know if they’re in pain- and if they are, where and why. It’s a constant worry that things like this will happen, and I didn’t notice the worry creeping up on me until we were here.
From start to finish, the surgery (and all the prep) lasted about an hour and a half. Martin and I got the call to go and see Rubeon in recovery, and by this point it had been almost 12 hours since he’d last fed! It felt so strange holding him, for the first time I really felt the fragility of him, and I didn’t enjoy holding him – not because I didn’t want to, but because I was afraid I would hurt him or accidentally brush against his fresh wounds. After a little while this feeling eased up, but it was still there. I think when you see your baby at their most vulnerable like that it can be a bit of a shock.
After his feed we transferred back over to the ward where, as they say, the rest is history! He had a cracking good night, plenty of feeds, sleep and wet nappies. No sickness, and his head was looking 100x better. He did have to have a bit of oxygen during the night as his O2 levels were a bit low, but this wasn’t a major concern, it happened during his last post op too, and his throat was a little sore from where they’d placed a tube in during surgery, but again that was to be expected.
On Monday morning, Rubeon was still perky and happy, the doctors came round and checked him over, and by lunchtime we got the green light to be discharged! Martin came and picked us up off we went, just like that.
When Rubeon was born and had his shunt fitted, we were told there was a 1 in 4 chance that his shunt would malfunction, and unfortunately we were the 1. As much as I wish this hadn’t happened, Martin and I now have a better understanding of how Rubeon acts when something with his shunt isn’t right, and we will be able to act a lot quicker if something goes wrong again.
I’m so grateful that Martin made the call to take him to hospital, but the mum guilt is overflowing right now.
I should have realised something wasn’t right. I spend 24/7 with him, why didn’t I pick up on this? I’ll be extra vigilant from now on, and anything I’m not happy about I’ll be making sure it gets seen to. I wish I hadn’t faffed with emails and just taken him straight to hospital when it all first came to light.
Thank you so much to everyone who sent their well wishes and thoughts to Rubeon. Martin and I are extremely grateful to know he has a lot of wonderful people behind him sending love. And a huge thank you to our families, who were able to look after Lily and William at such short notice. I honestly don’t know how we’d do this without you. Thankyou from the bottom of our hearts to you all. (And if you got to the end of this post, thank you and well done! I did waffle on a little!)
For now, I hope this is the last post of its kind with regards to shunt failure.