Scooby came home late on Thursday night, ready to wake up at home on his birthday. As is tradition, we started the next morning with a birthday McDonalds breakfast. We started this a couple of years ago as Ace and Scooby's birthday is always during term-time, so they got a special treat before going to school. This time of course, we could extend that treat to 'No school at all!' as we took the day off home schooling.
Ace had a fantastic birthday. McDonald's breakfast, no school, presents, playing games, Chinese for tea, movie night - but most important of all, I broke their usual half-hour-twice-a-week-on-the-Wii rule and let him play his new Lego Wii game for three hours. That is heaven for a techno-minded new eight year old.
Scooby's birthday was very different - he had all of the above (except the Wii game) but he also had six seizures, two long sleeps and uncontrollable shaking all day, topped with feeling really run down and miserable because of his current medication side effects. I spent most of the day holding him and trying to keep his shaky limbs calm. We abandoned our plans to go to my mum and dad's in the evening and stayed in.
The next day he was the same. He couldn't be left alone at all, except when he was asleep.
Around tea time we put him in the pushchair and all went out for a walk with some friends. The other kids ran around and played on the park, but he just lay back in the pushchair and shook. We had just turned round to come home when I saw the tell-tale sign of his eyes rolling back in his head. He was having an absence seizure, which unlike his normal seizures, last for a long time and make him completely unresponsive. As we bent over to try and revive him, Richard realised he couldn't hear him breathing. We rang an ambulance immediately and our friends grabbed the other children and took them home. For a long time we could only hear tiny shallow breaths coming from his mouth so Richard ended up hauling him out of the chair and onto the grass and doing mouth-to-mouth on him. Eventually he gave a little cough from his chest and we heard a proper breath come out, and then the ambulance arrived. Once on the machine, they saw his oxygen levels were just 60%, and he stayed on oxygen for the rest of the evening.
So Scooby's birthday weekend was cut short. He stayed in our local hospital for two nights and was transferred back to Manchester on Monday morning. He stayed in the High Dependancy Unit for the first few days while they monitored him closely, and gave him stronger anti-seizure drugs and the high steroid dose we'd been waiting for. He is now on the regular ward, but we know that we are facing being here for a while now. After last weekend, we need to see him more stable before we can bring him home.
We are also looking at long term solutions for how he will manage at home. Physiotherapists have seen him in hospital and given him special equipment to help him get around, and they will visit our home to do the same.
Richard and I are taking it in turns between him and the others, doing three or four nights each, then swapping over.
And Turtle, Ace, Rocky and Baby have just had a fantastic four days up at my uncle and auntie's farmhouse in the Lake District, so they are very pleased and blissfully unaware of the severity of the situation, as usual!
Thursday, 15 September 2011
It’s usually difficult to write updates about Scooby’s condition because most of the time we are in limbo mode – as in, ‘he seems to be doing much better but it may be that his symptoms are being masked by steroids’, or ‘he’s much worse but he’s just started a new medication so he may be better in a few weeks.’
We are in another one of those times but I will attempt an update here (by the way, I’ve created a subject link along the bottom of this post so if you want to read the whole past history, click on ‘Scooby Syndrome’ and all the past posts will come up).
Since the end of March, Scooby’s been on a drug to suppress his immune system and there’s been some highs and lows but it doesn’t seem to have done the trick. He was gradually worsening (getting more tired and shaky) and so we knew things weren’t good, but then we had a scan in July that really surprised us – it showed that the dodgy material in the brain had faded, indicated it was all old activity, with nothing new. This really encouraged all of us and so the doctors wondered whether his shakiness was due to seizure activity – like a prolonged small scale seizure between the actual seizures, as a result of the damage already done to his brain. So they put him on a new anti-seizure drug but we had to wait for a while for results, because with all these kind of drugs, you have to start on a small dose and very gradually build up to the full dose over a period of weeks. Over the summer he got worse until his legs were shaking so badly he wasn’t able to walk at all. Occasionally he can make a few steps in a row but then his knees buckle and he’s on the floor. So we’ve been carrying him up and down stairs, and to and from the car, etc. We have a fantastic double in-line buggy designed to take his weight and carry Baby too, which was paid for by a local charity, so we’ve still been getting out and about over the summer, but with his lack of ability to move and his almost daily seizures it was clear things were not good. After being in and out of the local hospital in the last few weeks (one visit was with a prolonged absence seizure that lasted over half an hour which was pretty scary) we took him back to Manchester where they repeated the MRI scan. As expected, it was worse. Why the last one was better, we don’t know, but this one showed clear spreading of this disease or material that still doesn’t have a name.
So now we are going to move forward to the option that has been on the table since the beginning of this year, which is chemotherapy. This particular type will attack a few different areas of the body, so it stands more chance of working than anything else. Obviously, chemo is never pleasant, but this particular type and small quantity, carries much fewer side effects and long term consequences than chemo normally does. Having seen what this brain disease is doing to him it now seems much more of a risk worth taking than when it was first discussed.
He was due to start it this week, however the initial tests he had when he went in showed that his blood count was low, and as chemo lowers your blood count even more, he needs to have a healthy one to start with. They were going to give him a large intravenous dose of steroids to boost his bloods, but he keeps having high temperatures (a symptom we haven’t seen in a really long time!), so they think he must currently be fighting an infection, in which case they don’t want to give him more steroids which will knock out his immune system......
So the plan (as of a few hours ago) is that he comes home, has a couple more days to fight this cold, and goes back on Monday to see if the mega-steroid boost (not an accurate medical term) can be given then.
Bad news = the inevitable is prolonged, he’s not feeling well due to the various meds and his cold combined, and his mood swings are worse because of the side effects
Good news = he gets to spend his birthday at home tomorrow with his twin and the rest of us J
Thursday, 8 September 2011
How was your summer? We had good bits and bad bits. Well, only one bad bit really (unless you count the general bad bits that comes as part and parcel of motherhood – the brotherly tensions, the disciplining, the grouchy moments both from them and me, etc, but we are allowed to forget those bits and focus on the good bits because it is our parental right). Scooby is worse again and is becoming more and more limited in what he can do. I’ll do a separate post about that soon but this one is to tell you what our summer, with its many good bits and its big bad bit helped us to decide.
It reminded me how much I love being with my children and how I prefer to be with them than ferrying them off to different places all the time.
It showed me that all five of them seem to flourish when given more time at home, balanced with meaningful activity and routine, including proper nap times, play times and brain-engaging times.
It removed from me the sick feeling I’ve had every morning for over a year when I woke up dreading a day full of overwhelming responsibility and chaotic to-ing and fro-ing and the resulting tantrums and stress.
It proved to me (possibly for the first time ever) that if I really set my mind to it, I CAN follow a set routine and fit far more into my day as a result AND enjoy it at the same time.
It looked a little bit like this (brotherly tensions, disciplining and grouchy moments both from them and me have been edited from this video):
It was fun, it was purposeful, it stretched our knowledge, character and imaginations, and we didn’t want it to end.
So we’ve decided it won’t.
Welcome to our new venture: The Scholes Academy of Adventure and Learning, open 365 days a year.
(We're still working on the name btw....)