Sunday, 3 June 2012

A genuinely good day

So, this was that week, that I thought was going to be the most important week of the year.  Isn't that what I said? Well, I may retract that, or maybe I won't.  I'm not quite sure yet.  It was a complicated week.  It was a rollercoaster, and my mental health was tested to the limit, and then some.  I learnt a lot about myself this week, as well as the boys.

So, I will start at the beginning.  Monday.  Monday we took Cameron and Ayden to their outpatients appointment at GOSH (Great Ormond Street Hospital).  I took Katrina to school, after being told I was a 'crap Mum' and all that stuff that goes with it (all because I wouldn't let her winter coat, it was so hot it was ridiculous and she wants to take a coat 'in case' that's a whole different story that's for sure!) and said the angry 'goodbye, have fun at your friends, come home in a better mood' goodbye.  I went home and we had a fairly relaxed couple of hours, before we left the house to head to London. 

We decided to leave a little early, rather than just go to London, stressing the train is delayed and we're going to miss the appointment.  So our appointment wasn't until 420pm but we got the train at about 11.  We arrived in London around 12ish.  We took the slow walk down toward GOSH, apart from it being ridiculously hot, it had been a nice journey.  The boys behaved, we took lots of pictures, it genuinely was lovely, and the day just continued to be relaxed, calm, and enjoyable.  I was a little disappointed that Katrina wasn't there to join us, but she was having a whale of a time at her friends house, and I have to remember that she is 9 now, and just because she isn't with us, doesn't mean we shouldn't have fun.  So, off to Nandos for lunch!! Rowan shocked us all by eating not just chips but chicken too, and KETCHUP!!!  We popped to get some cold drinks (my god it was HOT) and decided we would go to the park with the boys for a couple of hours before our appointment, get them nice and tired so they weren't hyperactive on the train on the way home.

Rowan was AMAZING.  He LOVED the slide, and he loved the swing, and even more importantly it's the first time we have been to a park and he can play with his brothers.  In a park, there are things that all my boys need help with.  So rather than just having to help Rowan the whole time, they all needed a bit of help with something, so they all got a little bit of Mummy time.  It's not often that I just appreciate doing 'normal' activities.  But the park that day, I just felt like Mummy.  Pushing my boys in the swing, coaching Ayden to believe he COULD do the rope walk thing, and showing him how to climb the rock wall and use the fireman's pole.  Laid on the witches hat with Cameron, just relaxing looking at the sky having a cuddle, while he tells me he loves me.  I wasn't anxious about the appointment (thank you Diazepam) and I had no expectation, I had no mission, it was just an appointment.  The boys were on the zip wire (honestly Coram's Fields is like no other park my boys EVER have been to!) and Rowan was in the buggy, resting, his legs were hurting.  And my phone goes.  It was the doctor's secretary asking me if we could make the appointment now, the doctor has no one else to see, and if we can make it now he'd really appreciate it.  So off we go, it really was hot, and I wanted to leave on a good note, not with me screaming at the boys, and it would be nice to not be quite so late home.

So we did the ridiculous booking in process.  Anyone who has been to GOSH will know how RIDICULOUS the outpatient thing is.  Not only is the outpatients not actually in GOSH but building next door, which is another hospital which confused me the first few times, the process is a little like this.....and no exaggerations.  About 40 minutes before your appointment, you stand by the wait 10 minutes for the lift to make it to the ground floor, and it's full, the lift empties out, and then before anyone manages to get in the lift the doors close and it's gone.  So you press the button again, repeat the process, but actually manage to get in this time.  There are only 2!! Lifts, for all those GOSH patients (plus the other patients).  There are stairs, but the point is that children are in pushchairs or wheelchairs, or just can't climb stairs, and there are 2 lifts.  So in the lift you get, and you have to go to the first floor (or second floor I can't remember).  You get out of the lift, and 'book in' once you have booked in they tell you which floor to go to, to actually attend your appointment.  So we repeat the lift saga, however it's more difficult this time because you aren't at the bottom, so most of the lifts are constantly full.  You make it to your floor, finally, where you have to book in AGAIN!?  I just don't understand this process, and I will admitt I am probably one of those parents that gets cursed because when I go to TPN clinic I don't book in at floor one and just go to the right floor and book in there.  (The lift situation is just ridiculous!).
Anyway, today, I decided that I wasn't going to do that.  Lee doesn't like lifts, so I sent him up to book us in, and I got in the lift and went straight to the right floor (experience teaches you which floor you need to go to) I took the boys and did the 'oh my gosh your face and hands are filthy your get backside into the toilet and get cleaned up NOW' thing.  Once they are all presentable I book us in on the right floor (this also gave Lee enough time to book them in on the correct floor).  The kids get to play a bit, and they have fun with the toys, and fighting with all the other kids over the little tykes car.  And then the doctor comes out, lets call him N and we enter the appointment room.

Now, usually entering 'the room' fills me with dread and anxiety.  Always.  But, either the diazepam was good that day, or the fact I had nothing I needed to say or achieve helped a little bit.  Maybe it was the fact I wasn't on my own, or maybe it was the fact that N and I have a long standing professional relationship where he understands me and how I work and what I need to hear and how, which makes me feel safer than usual, I'm not sure.  N sits there, with that big grin on his face, you know, the one I expected, when he looked at Rowan, he actually couldn't stop looking at him.  So we talked about Cameron first.  Cameron is going at an expected rate (very slowly but ok) the problems he is having are related to his desire to eat things he's not allowed.  It's not a great idea, but it's a process he is going through because of his age, wanted to test the boundaries.  So, we know that he still can't really tolerate anything.  We call it 'challenging' when you try them with something, you know previously made them ill, just to see if it's still the case or not.  For Cameron, it is.  We also found out, that, although not medically documented, it is well known that children who have gut inflammation and coeliacs disease, can be overly emotional.  This is DEFINITELY the case for Cameron, and it now gives me weight to telling people who want to bounce him backwards and forwards from CAMHS (Child and Adolescent Mental Health Service) no.  We have now been there twice.  No more.

Ayden was next, we discussed the diet and his weight and decided that he is doing slightly better than Cameron, he copes with Alpro yoghurts (soya) but he can't eat say, something else with soya in, before we have a problem, so it's just one tiny step at a time.  N said we were doing everything right, keep challenging, one thing at a time, and see how things go, he said we know what we're doing, and he is more than happy for us to drop him a line if we need to, we know where he is.  We talked about the issues we have had with Ayden since we saw him last, so his hearing and his grommets and adenoids, and we were told that that is VERY common in children with multiple allergies.  But he's glad it's now all sorted, and we were proactive in that.  Then I mentioned his growth hormone deficiency, and his hypoglycaemia problems.  He wasn't happy.  One of the things I like about N is that he does what the kids need, no matter how much that may upset other people.  So in our case it's upsetting our local team.  He is referring Ayden himself to the same Endocrine doctor that we see for Rowan.  There are lots of reasons why this is a good idea, so it's the next step for him.  This may mean however that the nasty tests we have done for Ayden already, will have to be redone, it depends how willing our local team are to hand over information.

Then, N shuffled his paperwork, and cleared his throat.  Usually code for 'now we need to talk about something serious'.  And my heart stopped, and panicked for about 10 seconds.  Back in January N took bloods from all 6 of us, for genetics we were told.  They have been stored since then (somewhere in a fridge).  This blood will, next month, be sent off for testing.  It may sound silly that I didn't really understand what this blood was for, but there are little bits of blood from us all over the world.  But this blood is really important.  Cameron has had a genetic test done called a 'Micro Array' test, which shows all the little chromosomes and which bits are deleted or duplicated, or other kids of rearrangements.  (this is how we found he has 16p11.2 microdeletion).  We checked Ayden and Rowan for this deletion and they do not have it.  N has decided there is no point doing a micro array test on Rowan and Ayden, because actually, if they have a deletion or a duplication on one or more chromosomes it doesn't really say a lot because there isn't a lot of information on most of the rearrangements anyway!  So, he was saying the micro array test is like smacking their genetic make up with a sledgehammer.  This 'new' testing, is like chipping a bit off, and going through it with a fine tooth comb.

The bloods will take 4-6 months to come back, and it may tell us the gene that have caused the boys problems.  If we can find the gene (a big IF) we may be looking at better management plans.  N was saying, that he is unsure whether it's the boys diet that's helping, or the periodic steroids they have.  If we can find the gene, then we may be able to find a better plan.  From there, we may be able to get the boys back to eating whatever they like.  Maybe.  If we find the gene, and we can find out what is 'wrong', we may also find out whether Cameron, Ayden and Rowan actually have the same 'diagnosis' just with varying degrees of severity.  N was explaining how he believes Rowan may have the key to solving a lot of problems in the world.  Our little 11kg, 80cm tall 3 year old, needs 5000 calories a day to grow.  If we can find out WHY he needs those many calories, and it can be recreated, obesity wouldn't be a problem no longer.  He also stated that a lot of people would like to get their hands on Rowan, and run tests and poke and prod. 

So, here comes our new role as Rowan's parents, learning how to say no.  No you may not run that horrible nasty test that is just there to satisfy your curiosity.  No, you may not take more blood.  No, we are not staying in hospital.  Picking and choosing which tests they can run and which ones they can't.  We're not going to say no to every test, but there needs to be a reason to run the tests, we need to start asking people to justify their requests for the various tests.  Not just on a curiosity basis, he is a 3 year old little boy, not a medical 'thing'.

It was an appointment packed with information, I'm glad we went early.  N got to go and watch his son play football for the first time in a VERY long time.  Some will say that I don't need to know that, he is a doctor, but, it also shows he is human, and a parent, just like us.

I will post in a little while about our hospital stay with Rowan.  I don't want to muddle to the two, and I don't want the positives of this day be lost amongst the other post.

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