Tuesday, 11 June 2013

When Does An Emergency Become Normal?

It's an unusual title, I admit, but it's something I'm wondering about today.  All weekend, Adam has reverted to hideous, piercing, screeching, screams.  It's been a long time since he's routinely emitted these screams, in more recent months, he's reverted to tantrums and shrieking when he's upset or struggles to communicate, but the constant piercing screams had reduced.  But from Saturday to Monday, every few breaths, he was letting out these screams again.  If you haven't had the pleasure of hearing him at it, imagine this:  Do you remember the sort of kettles you boiled on the cooker that would squeal when they were boiled?  The sort that kept on screeching until you took them off the heat? That squeal that was so loud and piercing, that you couldn't possibly ignore it, no matter what else you were doing?

That's how Adam screams.

Then imagine it over and over and over again for hours and days at a time.

At first we wondered if he was frustrated / tired / hungry / struggling to communicate / ill perhaps....we went through the list and tried to solve anything we could, but nothing helped.  On Saturday night, he was up and crying every half an hour or so, but nothing we offered helped for long - he was too tired to eat or drink, his dummy was a temporary comfort, he didn't appear ill so had no need for medication.  By Sunday morning, we realised he was running a low grade fever but there were no other obvious symptoms of illness.  Considering the misery of the last twenty-four hours, we figured Calpol was appropriate and offered him some, this helped him doze during the day but that was about it.  Sunday night was another sleepless night, but again with no obvious cause.  By Monday morning, I decided to try him in nursery simply because there were no obvious signs of illness (his fever had gone) but with the explanation of how the weekend had been and to ring me if they were unsure.  Sure enough, by 11:30, they rang and asked me to pick him up.  Again, no obvious symptoms of illness, but he was just miserable and clinging to his key worker all morning so they thought it was more appropriate for him to be with Mum.

As soon as I picked him up, he cheered up immensely and all signs of misery disappeared (of course!) but the piercing screams continued, this time paired with regular tantrums.  Adam already had a long-awaited first appointment with the hospital respiratory nurse so, with no reason to cancel, I packed him up and off we went.  The appointment was incredibly helpful for a number of reasons - shortly after hello, Belinda asked if anyone had yet mentioned asthma to us or if they were still talking about viral induced wheezes.  With a smile, I rolled my eyes, and explained just precisely the amount of time I've spent fighting for a recognition of asthma.  She laughed and said, "Well, as Adam is now two-and-a-half, I think that if it were viral induced wheezes, they would be resolving themselves by now.  The fact that his symptoms are still as bad as they are means I can be quite confident saying that when you meet Dr Rees in a couple of weeks, he will be referring to this as asthma."  (THANK YOU!)  

Her next question, "Has anyone mentioned granting you permanent open access to the hospital paediatric ward yet?"  I've heard about this from other parents of disabled and chronically-ill children but while we have been granted 24-48hrs open access each time Adam has been treated at the hospital, permanent access has never been suggested.  But, as Belinda explained, if Dr Rees approves this, it means that when Adam is having an asthma attack, we would no longer be effectively fobbed off by ShropDoc when we ring for medical help overnight ("we can see him in six hours...."), nor would we need to fight with receptionists at the surgery for him to be seen by a doctor - I told her about a recent experience when Adam was struggling and the surgery agreed to offer him an urgent care appointment in the next ten minutes, but as this developed into a thirty-minute wait in reception, Adam was coughing, crying and struggling for breath and clearly becoming very ill indeed, worse by the moment.  I took him to the reception window and asked how long the wait would be and was told, "We can't tell you that, urgent care means you wait your turn."  When I pointed out how ill and how young Adam is, she said the same thing.  It wasn't until I stood at that reception window and bluntly said, "Either you page a doctor now or I'm ringing 999 while standing in this surgery!" that she agreed to page a doctor.  Said doctor, after giving Adam a nebulizer, sent him straight to hospital where he was admitted overnight. 

Sadly, Belinda wasn't remotely surprised and said she hears stories like this far too regularly, it's not the GP's who are the problem in these cases, its the receptionists who seem to believe it's their job to keep patients away from the doctor.  They are so keen to make sure everyone who causes a fuss doesn't jump the queue that unfortunately, they become unable to detect genuine emergencies and respond to them.  So that suggestion would avoid this - if Dr Rees does grant us this access then, because I know Adam best and I'm not about to take him without need, I would be allowed to judge when Adam needs hospital treatment and ring the ward, ask permission to bring him in and then do so - no fighting with phone services, surgeries or waiting for hours in A&E, just an acknowledgement that this is a child with a serious, chronic condition who, when ill, needs to be seen.  There is of course one downside, which is that he would not be able to develop a relationship with the doctors as hospital consultants rotate based on shift, but already I recognise a number of the nurses in this ward and even then, this is quite a minor concern if it means he is receiving the help he needs, when he needs it.  Clearly, this would be a good thing.

She then went through all sorts of information and treatment on asthma but this is where the concerns started.  Throughout this appointment, Adam had been upset.  It started with him struggling to get out the door (we had to lock ourselves in to keep him in with us); then it was crying, throwing toys, his dummy and refusing either food or drinks offered in comfort.  Trying to cuddle him on my lap resulted in him thrashing, hitting and kicking me, but putting him in his pram prompted hysterics.  At first, Belinda asked if this was normal behaviour for him as she realised Adam is a complicated child - and at first, it was normal behaviour for him (albeit not so normal for another child!) But as the appointment progressed, distress turned to hysteria and this hysteria grew worse and worse and worse until I could no longer focus on Belinda or what she had to say, and she couldn't make herself heard over his screaming anyway.  Eventually, even I with my very thick skin in the face of Adam's tantrums, was becoming worried about him.  The hysteria simply wasn't calming down and nothing I could do was helping.  He was quite literally thrashing in his pram, screaming so much he was struggling to catch his breath, and it was obvious that *something* was wrong, though neither of us had any idea what.

At this point, to my immense relief, Belinda asked if I wanted a doctor to see him before we left the hospital.  She said she simply wouldn't be happy sending him home and would be worrying that something serious was going on.  So she rang the Paediatric Assessment Ward and asked for him to be seen; she then walked us down to the ward and personally spoke both to two nurses and to two doctors to make absolutely certain that he would be seen quickly.  It was perfectly obvious to me, that with his history of meningitis, she was very worried indeed that something this serious was going on.  We sat in a cubicle as I did my best to hold him (no easy task around the thrashing and screaming) and I struggled to stay calm and deal with my fear as it was simply getting worse.  

But then,

suddenly,

Adam let out an ALMIGHTY belch.  

It was the sort of belch that rattles the walls and can't fail to shock those who hear it.  

This was promptly followed by a fair amount of wind from the other end, and....

Peace.

"Thanks Mum, I'm all better now!  Is it time to play?"

SERIOUSLY?????

All THAT for WIND?????!!!!

But at that moment, I suddenly made a connection and I'm amazed it took me so long.  (Why did it take me so long???)  On Friday afternoon, we ran out of Adam's prescription maximum strength, Gaviscon, which he takes after every meal and snack.  I couldn't get a new prescription before the middle of this week, so I asked Chris to go buy me a bottle of it over the counter.  He was only able to get the ordinary strength formula but, with little choice, we offered him this over the weekend.  You see, Adam has been doing so amazingly well with food over the last three weeks, that I had been starting to think that perhaps his silent reflux might be improving.  I even wondered about asking to reduce this medication.  But, finally, putting two and two together, I realised that all this weekend, he has been having normal strength Gaviscon...and he's been screaming constantly - not crying screaming, just shouting screaming.  Then, the events of yesterday which prompted both myself and a hospital nurse to think there was a serious emergency going on, which resolved itself in an almighty bout of wind.  And this is when I finally made the connection between this episode and those eight months of horrific colic Adam suffered after birth when he would scream and cry for hours on end before finally being able to pass wind and calm down.  This was so similar, I couldn't believe I hadn't made the connection earlier - but he's too old for colic!  Evidently not.

But you see, I am so used to coping with Adam's screams, his temper, his tantrums and his inability to communicate what he feels and needs that for me, emergencies are normal.  Watching my son struggle to breath is normal - for others this would be a shocking emergency.  Enduring his constant tantrums, which make everyone else turn and stare and wonder if something is seriously wrong, is normal.  Evaluating for every sign of illness I know and, when finding nothing, putting it down to what is normal for Adam....is, in itself, normal.  And yet for others, this sort of behaviour is so abnormal that it is judged to be emergency.

This is what Belinda explained to me - when parents of disabled or chronically-ill children become so used to coping with the challenges of raising their particular family, they seem to do one of two things - either they panic over everything because it is entirely possible that anything is serious and always seek medical help, or they take it in their stride and only seek medical help when they are at their limit, but cope with anything else because they know there is no "treatment" that can make their children "normal" (and yes, I do use this word very loosely, I know it's a loaded one).  Neither of these are necessarily right or wrong because in this situation, we do whatever we can and whatever seems best at the time, but it's only when we see our children through the eyes of other who are not "used to them" that we see just how much we are dealing with.  

Believe me, open access to a hospital ward is not offered unless it is merited - not in this economy.  

Hospital nurses don't rush a child to an assessment ward, refusing to let them go home until seen by a doctor, without reason.

But to me, precisely this sort of emergency is normal.  It's just part of my reality.

So in the end, despite cheering up quite a bit, the hospital doctor examined Adam and also diagnosed him with a throat infection (complete with inflamed throat and white gunky bits on his tonsils) and he was sent home with antibiotics, hospital-grade Calpol (aka extra strength) and, on this occasion, 48hrs open access to return if we need to.  

Thankful for the sedative power of "the pink stuff", we were only up with Adam every four hours last night, instead of every half hour as we were on the previous two nights.  Oh the bliss of a restful night!  

Trust me, everything is relative...  :-)