Wednesday 23 January 2019

Bad Fit

Clearly the universe gets the vibes when everything is lovely and settled because BOOM. It all went to shit over the weekend.

As a parent I am aware that there will be many occasions where as much as I want to, I cannot simply wrap up my son in cotton wool until he's 37. He will fall over at school and hurt himself. I'm sure there'll be times when he doesn't look where he's going and headbutts a wall. There have been times when he is beyond snotty and I just want to make him feel better. And then there are times like Friday evening when you simply feel like you cannot do anything to help your child and you're helpless.

My son had a temperature and I was asked to collect him from nursery on Friday (he'd also been teething), so naturally didn't think anything of it. We spent the afternoon on the sofa watching The Greatest Showman and having all the cuddles. And then just before tea time, he was laying on my tum - he looked up at me and it is a look I will never forget. He was trying to focus on me and went to put his hands on my face. But he couldn't. He couldn't focus. He couldn't reach me even though I was right in front of him. And then his eyes rolled into the back of his head and he began to fit.

I put him on his side on the floor as I wasn't sure if he was choking at the same time. Fortunately, (and god knows how it was at the EXACT time it happened), but my sister-in-law arrived and she's a paediatric nurse. We knew straightaway that we needed to call an ambulance - and my word, that conversation was the longest 11 minutes before the crew arrived. My husband was with our brother-in-law and they both raced home once we'd spoken. Seeing the father of my child burst through the door to quite the scene, must have been really tough for him. I knew how I felt about it all unfolding in front of me; I can only begin to imagine how he felt, too. In a nutshell, my son had three seizures before the ambulance arrived. Vomited twice. Shook. Was stiff. Was unresponsive. Couldn't focus. And I've never felt more useless. My sister-in-law did a sterling job as I flapped around the edges, packing a bag for the hospital and whenever we were able, hold onto our boy to tell him his Mummy was here, Daddy's here. We love him.

Everything is a wee bit of a blur and I guess by my writing about it now, is in some way a coping mechanism for what went on this weekend. The post may get a tad lengthy, but a lot happened that I need to get my head around.

In the ambulance, we had two pit stops: one to collect another member of ambulance crew to administer some medication whilst we went blue lights a'flashing through town. And then another to pick up the air ambulance doctors who had 'Critical Care' emblazoned on their jackets (!) My little boy was on the bed with all of these people around him, and I just sat there with my seatbelt on, holding the gas tank because I had nothing else to bring to the party. And my husband, bless him, sat in the front of the ambulance similarly helpless. We got to the children's hospital and headed straight to A&E - to resus - where what seemed like everyone who worked in the hospital was waiting for our arrival. [Anyone who's watched any kind of real life hospital programme on the tele knows it's not the best if they ring the red phone. The critical care doctors had rang the red phone before our arrival. THE RED PHONE.]

Never have either myself or the husband wanted to pick up our boy and tell him that everything is going to be ok...and it actually be ok. In that instant. Be able to make it better for him now.

Unfortunately despite all the medicines in the world for seizures, nothing stopped him fitting. Until they stuck paraldehyde up his tiny bottom; a last resort before a general anaesthetic. At this point, one of his seizures had lasted 50 minutes - and I thought that 11 minute phone call had seemed like a lifetime. Jesus, was I wrong. They ran a CT scan as well as did a chest x-ray and as far as we could tell, there was nothing major to report on either of them. We just had to play the waiting game on the High Dependency Unit overnight.

Fortunately there were no more fits on our first night in hospital (his body must have been exhausted and that makes me so sad for him), but we waited to see the neurologist team that following morning anyway. Our little person who we made was struggling to bear any weight on his own two feet, he was still really floppy and lethargic and had the oddest gurning going on; his tongue kept coming out like a camel's and his speech was all slurred. All we could do was hope that these symptoms were down to the fact he was off his little rocker the night before and that rather than them be symptoms of something more serious, they were instead side effects of the drugs he'd had. Hopefully with a good night's sleep they'd wear off and disappear? The consultant decided that it wasn't worth the risk and that our son would need to have a lumbar puncture. In case you didn't know (we didn't) a lumbar puncture is a procedure in which they put a needle in between the bones of the lower back, into the fluid around the spinal cord and the fluid can then be extracted for testing. We got told we were testing for meningitis - as well as anything else that might have caused the seizures. They tried to do the lumbar puncture with some sedation, but despite not being 100% himself, our little lad was too wiggly for them to do it on Saturday.

Which leads me onto Sunday. Our son had been treated with antibiotics from arrival as if it was meningitis, whilst also having antibiotics for all things viral and bacterial; it's gibberish to me, but all you need to know is they were so on top of his care from the moment I dialled '999' and I am forever grateful to the NHS.

But yes. The needle in the spine. Poor chap was nil by mouth from 6am Sunday morning as he was due to go into theatre in the afternoon. My husband and I took him down and as only one parent was allowed into the anaesthetist bit, I went in with our boy after my other half kissed him and told him he loved him. Now I've had 17 operations. 16 with general anaesthetic (one was a c-section, so a jazzier op than anything Crohn's related). Yet holding him in my arms as they administered the knockout fluid through the cannula in his little hand was something else. Hearing my little boy say it was 'chilly' and holding his arm as the cold fluid travelled up his forearm - a feeling I knew so well. And then just like that, within no more than 2 seconds... he was asleep. I kissed him on the head and told him I loved him, too. Told them to look after him and went out to meet my husband. And we waited.

We got a call exactly one hour later: we left him at 2:44pm and the ward called at 3:44pm to say we could get him from Recovery. As before, only one parent could go so this time my husband went to collect him and I waited to give them both a big squeeze.

Should probably throw in for good measure here that our son was definitely feeling more like himself that morning as he was able to do standing. And walking. Or as he ended up doing, a quick turn near the only cupboard in the room and split his eyelid open on his brow bone. So for dramatic effect, we then ended up with not only a lumbar puncture scheduled in - but a few stitches too for the newly developing black eye and laceration. Don't do things by half son! With regards to theatre though, all went to plan and the results from the lumbar puncture were due to trickle through over the next 24 hours. My husband and I continued to tag-team the hospital nighttime shifts and had everything crossed for some good news.

Unfortunately for the little one though, there were a few moments in the nighttimes where he had to have his cannulas removed/changed for his antibiotics. Hearing your child scream out for Mummy and Daddy whilst sobbing because of pain is so so tough to see. When the final cannula was removed on his last night, he turned to me when he woke up and just announced that 'baddy...gone' and gestured to his blood-stained foot. My heart melted for him.

But onward and upwards we went! The test results were starting to come in and we were looking good for it not being meningitis. However the fact it was still being mentioned due to some outstanding test results, meant none of us could fully relax just yet. He was definitely more like himself. But we wanted to make sure we were going to leave with the best case scenario: that being that it was a complex febrile convulsion, and hopefully there's no lasting damage - with these fitting episodes few and far between.

And that is what we got: complex febrile convulsions. That was our diagnosis on the discharge letter yesterday.

So after 5 days in hospital (and what seemed like forever) we were going home, together.


NB: I had febrile convulsions myself as a child until I was around 9. I knew what they were - but under no circumstances did I think I would see my own son have a seizure in front of me. Multiple seizures, in fact.

Apart from writing this post as a way for me to process the weekend's activity, I also wanted to put it out there because it was such a scary unknown for us as parents. That guilt I had was horrible; that maybe I should have been able to stop the seizures happening. But the doctors explained that generally speaking, with febrile convulsions it'll kind of happen regardless. As in, he didn't have a fit because I didn't do enough to make him feel well. 

And now we know that if it's to happen again, we just do exactly as before...ring 999 and let the emergency services do what they do best.

Wednesday 16 January 2019

10 Year Challenge

You may have been aware of the latest internet craze called the #10yearchallenge? Essentially a then and now (or at least a 'then') from 2009. Why someone felt 2019 was the year to look back from is beyond me? Surely 2020 would have been better, as a multiple of 10. Or maybe I'm just thinking too much about this.

Anyway. I hopped on the bandwagon on this drizzly Wednesday, after many a day of scrolling through various social media platforms seeing people's throwback to a decade ago. Glow ups, etc. Lovely time. And I put up a picture of me from ten years ago.

But it wasn't until I started looking through my own photos properly from 2009 that it dawned on me: I've been having my own 10 year challenge. January 2009 was the month I got diagnosed with Crohn's. 2009 was the year that what I thought I knew of my health was all change for forever more. A whole decade of diagnosed IBD.

I pretty much spent all of my 20s - in one way or another - poorly. In hospital. Lying down because it hurt to get up. Sleeping on a narcoleptic level. Fat. Thin. Steroid moonface. Taking medication. Injecting medication. Having an IV for medication. Keyhole surgery. Robot surgery. Slice me open surgery. Hospital admissions. Inpatient. Outpatient. Too many perianal abscesses to mention. Too many visits to a toilet. Too many medical professionals looking up my asshole.

In January 2009 I was presented with a challenge I didn't know I'd have to face; a challenge that had mini-challenges en route. But Jesus Christ it has absolutely been the making of me.

And here we are now! Yes OK, I'm like 17 operations in (who's counting?!) But I am in my 30s. Married. Mama. Now a homeowner (what a palaver that was - will pick up that topic of convo another time). Back working on a magazine portfolio that I love so much. Things are actually really good! And I'm so happy that everything finally seems to be falling into place for me and mine.

Sure, I still have to do an assessment of where all toilets are if I'm out for a family walk. Or there might be times where Mummy just needs to have a quick powernap before we watch Teenage Mutant Ninja Turtles for the 6th time that day. There might also be times - like now - when I'm sitting on a train and I catch my reflection in the window and it's apparent that my tired bags have developed their own bags. Eye bags on eye bags. It's quite a look and I don't think any form of makeup layering is going to help this face out.

I don't mind you see, because besides being rather tired, I am content. I have spent three days in London doing meetings and what not for work and it brings me joy. But not as much joy as stepping off the train to be greeted by my husband and son will bring me. My boys. My little team.

To be honest...I'm not sure where this blog post is going. Am I waffling? I just knew that I had to take a moment to acknowledge the ol' decade long anniversary of knowing my insides were broken. And that however shit things might have seemed at times, it works itself out. Ish*

Here's to the next ten years.


*I mean nothing is a guarantee. But all in all, I guess if you can find the positives where possible and then just ensure to have a ruddy good time?

PS: I'm running out of sentences to apologise for my MIA blogging. I do get annoyed with myself that it's so infrequent. But I guess it's going to have to be as and when, probably the best way forward. So until next time...(whenever that is!)

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