Wednesday, 14 April 2021

Oh hello again...

I mean, I’ll be honest when I say I thought this initial post would essentially be a quick catch up from the last post with a nod to the hiatus. But it seems I haven’t posted since April 2019 and in the words of Ted Hastings from Line of Duty: “Mother of God!” Haven’t things changed since then!?

As I don’t have 2 year pregnancies like elephants, I did of course go on to have our second baby in the Summer of 2019; a little boy who decided to arrive 5 weeks early. He’s a dreamboat who’s now 1.5yrs and doing wonderfully. My eldest son is due to start school this year and we’ve just got a Cockapoo pup. We’re a busy little unit, but I wouldn’t change it for the world. Oh, also not sure if I mentioned at any point that our cat now only has three legs? We can save that for another time. We must press on!

But where do you even begin with the shitshow that was 2020? Apart from the obvious angle of a global pandemic which turned the whole year (and world) upside down. I feel like if ever there was a year when I should have been writing as a therapeutic tool, it was probably 2020. But I didn't. I suppose 2020 felt like frequent information overload and so subconsciously I spent time to take in what was happening around me. And now I guess it feels a bit like maybe it's worth trying to vocalise my adjusting to the ‘new normal’, negotiating through the uncertain future plans and what that might look like. Equally it is impossible for me to look at last year and not acknowledge that from a Crohn's point of view, it was the hardest year I've had in bloody ages. What. A. Joy.

I want to talk through all that in separate posts though, as it was a wonky old time and, I don’t know, it feels a bit heavy. However I need to put it out there so I can finally process it all? From shielding and being an extremely vulnerable to the time I actually shat out my mouth due to an intestinal blockage - it’ll be quite the literary ride!

Hope to have you join me. It’s nice to be back.

X



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Tuesday, 9 April 2019

Woah to 2

WE ARE HAVING ANOTHER BABY *klaxon*

We're going to be a family of 4. Two children. A second spud due for arrival in September. Woah.

I still find it quite mind blowing that my husband and I coped (?!) with the secrecy of those early pregnancy days, whilst our first born was having the worst health experiences of his little life so far. Such a dramatic overlap.

The six weeks of knowing there's a new human growing, but weren't yet scanned and in the 'safe zone', all the while being tested in ways that you hope to never be tested as a parent... I found that really tough. My emotions went through the ringer; wanting to do everything for my son yet trying to stay calm for the unborn. I wanted to shout from the rooftops that we were expecting another child, so please bear with me if I seem wildly overemotional. And yes I would like some gas and air in the ambulance, thank you please. However, we had to make sure our son was all right and another few weeks of sshing about the bab wouldn't hurt. Now we've been scanned. We've seen the tiny spud. My rooftop shouting can really take off.

We actually found out we were expecting the day before our son's first seizure episode. Talk about highs and lows in a condensed space of time! But due to terrible period maths on my part, I had no idea how pregnant I was. I did guessing based on whether I took multiple tampons to my Christmas do - even with that, I wasn't sure if that meant I was nearly finished or had just come on? So in short. No. I don't know when my last period was. I just knew that the four different tests all suggested that there wasn't going to be another period anytime soon. All sticks pointed to POSITIVE.

It was all very surreal because that technically meant that we were going to be parents of two. Jesus. The toddler terrible twos are very much a thing we're in the middle of - so what happens when you have a toddler and a newborn?! I once heard the phrase that when it comes to multiple children, two is a zoo. And there we were... positively pregnant with a second. Zoo, here we come.

Did the relevant admin with the midwife and got booked in for our dating scan. We were so close to being able to tell people (as long as all was well) and I could sense the anticipation of no longer having to dress in a sack and walk like Quasi Modo to hide the bump. Yet as I mentioned with my bad period maths, our scan meant we were actually only 10 weeks pregnant. So not able to officially announce the second bab - and equally not pregnant enough to have the first set of screenings, either. This also meant another due date after measuring the little thing. Back in two and a bit weeks to do the proper dating scan then!

The longest two weeks of all time, yet there we sat, looking at the new bean on the screen. I cried. I've felt so emotional this whole pregnancy - not sure if it's because of the timings/circumstances around when we found out? Or that my awareness has heightened with regards to pregnancy not going the way it's supposed to. It's most likely a combination of all, but at least I had the take home from that appointment that our new bean was doing well. Everything looked as it should. We also had another due date now they could actually measure crown to rump...it's a late September baby! (Minus a week or so due to elective c-section so my arse doesn't fall out in pushing, thank you Crohn's). So yes, now we can tell friends and family the good news. I can be preg and proud.
I'm so pleased that I took the time to blog every week when pregnant beforehand - and despite my slack writing since then - I have decided to do it again with this bab. I'm currently 15+6, my turn of the weeks being on a Wednesday. I want to document all the iddy biddy feelings and share how different (or not) they are from the first time round. And I'm going to try and be a trendy mum-to-be with an outfit post each week too. Because my word, this bab has popped right out. Muscle memory, or whatever it is... I don't know how I'm going to dress this speedy bump. Unitards? Tents? I'll be sure to share the weekly outcomes regardless.

X








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Wednesday, 20 March 2019

Second Fitting

I say second; it was the second occasion and only one seizure, as opposed to the first instance of multiple seizures with what seemed like no end in sight.

It was our son’s outpatient appointment on Friday following up from everything that went on 6 weeks ago. Off we sent him to nursery, as per, on the basis we’d be picking him up at lunchtime to take him to the hospital. He’d been a bit snotty that morning so we gave him some Calpol – as you do – but didn’t think too much of it because he was fine? I got a call an hour later from the nursery to say that they’d taken his temperature and it was up past 39 now (considering he’d had medicine less than an hour prior, this didn’t sit too well). My husband went to collect him and I said how I’d meet them at the hospital as planned, later on that afternoon.

But then I got another call from the nursery, from my husband’s mobile. Not to panic, but he’s with our little boy and the ambulance is on its way as he’s having a seizure. My heart sank. I cried a bit.

I left work and drove straight to the nursery to find my two boys in the back of the ambulance, critical care on its way and prepping to do blue lights into town to the hospital. From what I could gather, there was only one seizure this time… but it lasted twenty minutes. So, it’s still atypical. We still don’t know why it’s happening. The only constant we have so far between these two occasions, is that his temperature had spiked. Except this time there were no obvious leads into the fitting, as in he wasn’t visibly ill on Thursday. Whereas last time he’d been a bit clingy and feeling sorry for himself that week and you could have said he was under the weather, somewhat. But off we went with the sirens to A&E at the children's hospital.
However this time I felt a strange sense of calm. He’d only had one fit. He’d stopped on his own. He didn’t need additional intervention for anything. Just some oxygen, I mean sure, his little bod was stressed. But he was talking, and he wanted to eat and he wanted to drink. As long as there were no more fits, we were just going to be observed by the doctors: the usual obs plus prepping his arms with ‘magic cream’ in case we needed bloods and (somehow?!) we needed to get a urine sample off of a toddler who is still learning how to wee in a toilet. Help.

Long story short, his obs were fine and remained stable the whole time we were there. The only bit of drama was when we tried to do his urine sample; he ended up doing a weewee all over his Daddy’s leg like a scene out of Dumb & Dumber. Little bit of a dribble to start with which we knew wouldn’t be enough for them to test. But then the wee just kept coming! The pot was filling up and then the power of the weeing meant it was now going in and essentially straight back out onto my other half. Oh how we laughed. The delirium/relief/tiredness from the morning’s events had kicked in. And there we were, in A&E, sick and injured children around us. And we were laughing. One of us covered in piss and the other one holding said piss, in a pot. And our boy, naked from the waist down looking at us like we’re mental. But the wee was fine. He was fine. We were allowed to go home.

So until he fits without a temperature, we’re assuming febrile convulsions, as before. If he fits otherwise then we most likely have an underlying issue that needs to be found. We’re due an EEG in the coming weeks to check his little head and then the rearranged outpatient appointment to follow.

It’s obviously just going to be one of those things and we simply have to hope that each time it happens, the seizures are few and far between and that we’ll get to the bottom of it sooner rather than later. Because it just makes you realise how fragile your little person is. But equally, how tough they are too.

X

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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.

X

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.
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