Tuesday 24th September is a day I am unlikely to forget. It was the day that I realised something was very wrong with my little Bear. Actually that’s not strictly true, I had noticed something the day before but put it down to him being 5 years old and pulling funny faces. Tuesday was different though. I noticed it first thing in the morning when he laughed but again I put this ‘funny face’ down to him being silly and then whisked him off to school. As soon as he got home and I had a proper look at him, I noticed that he was pulling this new ‘face’ more often than not and always when he smiled or laughed. In fact, whenever Bear tried to doing anything with his face, it looked the same and then I noticed that his resting face was all off kilter too.
I told The Bearded Manc and after asking Bear to do a couple of things with his face he turned to me and said ‘he looks like he’s had a stroke’. I immediately felt sick. That little nagging feeling was suddenly filling my stomach like a lead weight and the guilt was already washing over me.
Everything about the left side of his face was wrong. His mouth was clamped tight, his eye couldn’t close, his eyebrow was too low & wouldn’t raise and his cheek was swollen.
Within two minutes we were in the car and on our way to Trafford General urgent care, clinging to the hope that a Doctor would tell me I was being paranoid. As is usually the case.
The receptionist advised that there was a 3.5 hour wait, so The Bearded Manc and Bunni went home to pack a bag while Bear and I prepared ourselves for a long wait. It wasn’t though. We were triaged almost immediately and told there and then that the suspected diagnosis was Bells Palsy and it was unlikely that we would go home that night.
After another little wait – during which time I made calls to sort out a babysitter for Bunni (cheers Kate!) – we saw a doctor who said we were to go straight to Whythenshaw Hospital where they were expecting us.
The urgency was unsettling.
With Posey in bed and an overnight bag packed, we headed to Whythenshaw Hospital unsure of what to expect.
The doctor’s ran test after test before confirming Bells Palsy. It wasn’t a stroke which was something. But what had caused it? What was Bells Palsy? Why was the left side of my little boys face completely paralyzed and swollen?
There was talk of infected bones.
There could be a “mass”.
“You mean a tumour?”
The doctor nodded gently.
I didn’t think I could feel worse but at that point my insides felt as though they were quite literally falling out of my body.
I would be empty.
By 1am my Bear was utterly exhausted. He had no more strength for the constant testing of his bodily abilities. He didn’t want them to take any more blood but like the lovely little chap that he is, he let them do it without protest and repeatedly thanked them for helping him. He was hurting and confused and worried yet remained polite and helpful. The doctors finally let him go to bed and in under 30 seconds, he was asleep.
We moved him asleep in his bed to another ward, hitting every possible door frame, desk or computer stand on the way. If I wasn’t so inside my own head it would’ve been hilarious. There was a baby in the opposite bed with a horrid cough and a teenager next to us suffering with his appendix. It was loud. I knew I wouldn’t sleep anyway because my brain was whirring but I managed three naps, all under 20 minutes before finally waking around 5am when the nurse put the main lights on to check on the teen next to us.
It was a noisy, restless night. Machines beeped and whirred constantly. The big lights were flicked on and off every half hour, with full volume conversations between nurses and patients parents. Bear woke a few times due to the noise, managing about 5 hours of broken sleep in total.
We had to tape his eye shut because he was (and still is 14 days later) unable to close it and that is a big problem. If left open, Bear would at the very least experience significant discomfort or worse get an ulcer, resulting in permanent loss of vision.
Day two of our hospital stay involved yet more of the same physical and blood tests. While Bear still agreed without a fight to everything the doctors and specialists wanted to do, he was emotional. He begged us not to bring his little sister in to see him because ‘she would be worried and confused and scared’. He didn’t want her to be frightened by it all. But she came and brightened his day and when it came time for her to leave (hospitals are no place for kids) he cried for her. He needed her. What he couldn’t understand or articulate was that he wanted normality, he wanted to be at home playing with his baby sister, away from all the scary beeps and sharp objects. He wanted his bed.
While my heart ached, the paediatric consultant could barely contain her excitement. They never see Bells Palsy in children, especially one so young (5). She asked if her students could come and do some tests on him. I wanted to say no, find another guinea pig. The lioness in me was roaring. But I knew I had to say yes. It’s how doctor’s learn. It’s how his doctor was able to make a diagnosis. Still, she could’ve tried to hide her glee a bit better. That’s my baby you’re about to poke and prod, luv, and he’s had enough.
Day three, we were allowed home with an appointment for the following week and several more in the pipeline. We were advised to watch for any slight change to his face, speech, physical abilities or mood, in which case he is to go straight back in. It is more responsibility than I would’ve liked. I’m not a doctor. We took our bag of drugs and info and went home, with a quick stop for ice cream, a bath bomb and some new pencils for being so brave.
School have been great. They went along with everything we said and allowed us to ease him back in gently. They’re aware of what to look for but dropping him off the first time was the thing that finally broke me. He was only going in for a couple of hours but before I left I had to explain the warning signs to him i.e. facial tingling &/or paralysis anywhere other than his face etc etc. I was making my 5 year old responsible for recognising if he was undergoing a medical emergency and it was too much. I left him there, telling him to be brave and have a great morning before bursting into tears the minute the door closed.
The floodgates were open and I couldn’t stop. I’m not a big crier so I felt stupid and each time I thought I’d got a grip on on my emotions, more tears came.
I cried because of how tired he was.
I cried because the taking of bloods had hurt him.
I cried because his face was paralyzed.
I cried because for a while we thought he’d had a stroke.
I cried because for a while we thought he could have a tumour.
I cried because he never fought us or the doctors or said no. He made it so easy for everyone.
I cried because he’s only 5.
I cried because his eye won’t shut and ripping the tape off in the morning hurts his little face and leaves a mark all day.
I cried because of all the drugs and the drops.
I cried because of the uncertainty.
I cried because it was all a shock.
I cried because I felt so unbearably guilty about not acting on it on Sunday or giving any importance on Monday morning when he said he’d ‘slept half and half’. I now know that meant one eye was open all Sunday night. I could’ve got him help sooner. I should have got him help sooner.
I cried because I was frightened.
I cried because I was finally away from him for the first time in days and I could finally be something other than calm and positive.
I cried because I was relieved it was nothing worse.
The doctors said 6 months recovery time although he has made such impressive progress, you wouldn’t notice anything physically wrong unless you got him to stand still and let you have a good look. His eye still won’t stay closed although he can blink and there’s a bit of dribbling here and there but his smile has improved dramatically.
I would say that his mood and energy levels are the biggest battle now (aside from the eye which won’t close but we’re on top of that at night, taping it shut). Anxiety and depression are things to look out for with Bells Palsy and while he is in no way anxious or depressed, we have a light chat daily about mood and worries and reaffirm that he has nothing to be self conscious about.
His energy levels are all over the place though. At the start of the day he is bouncing off the walls thanks to the drugs, but by mid afternoon he is struggling physically and emotionally. It’s sad to watch because he’s normally such a level headed, calm kid. So we are trying to tailor our time around that and look out for the dip before it hits hard and school are doing the same.
All in all, despite still being a bit shook and I think doomed to being a bit paranoid from this day forward, we are very positive. The doctors are confident that this happened because of recurrent ear infections. They were both infected for around 12 days leading up to this so that’s something we have to get sorted because this CANNOT happen again. I have been begging for help with his ears for around three years, perhaps now we will finally get some.
Take note of the symptoms described above. It is important that you (it is much more likely to happen to an adult than a child) or your child is seen at the hospital immediately. I won’t post a photo of my Bear’s face at its most affected because at 5 he cannot consent to that, but there are lots of photos out there which look similar, so familiarise yourself.
I should also mention that the staff at Wyhtenshawe Hospital were utterly fantastic, I cannot fault them. Everyone we came into contact with was wonderful with my Bear and did their best not to cause him any pain or distress even though it wasn’t always possible. The facilities were brilliant too. The playground, which was outside Bear’s window was fab and a much needed distraction for poorly kids.
My little bear though, what a kid!
If you ever have the privilege to meet him, you’ll see for yourself. I truly could not be more proud of him.