I normally do the grocery shopping on a Friday – hardly a fascinating start to a blog post, but bear with me. Friday being Christmas I had to go the day before, and in anticipation of all the last minute Christmas shoppers I was up and at the shops at 6am. Though quite a few other people had the same idea I was done and heading home by 7.30, I had a few treats for Christmas morning – croissants and the makings for eggnog, and was mentally planning a blog update along the lines of ‘we are in a really good place, everything is great, Happy Christmas’ as I headed home to unpack. The scene I arrived to was anything but the normal early morning chaos you usually find at our house. Alex was stumbling about clearly disoriented and extremely upset, nothing Phil could do would calm him so I resorted to an old standby – cuddles with blankie and Mamma.
He did start to calm a little, but he wouldn’t answer any of our questions, seemingly unable to tell us what was wrong, or if he was in pain. Even the simple questions like ‘what’s your favourite colour’ didn’t get a coherent answer. As he calmed I could make out the sounds and inflections you get when speaking, but the ‘words’ coming out were nonsense. Thoroughly alarmed now we rang the Michael Rice Center, told them what was going on, given the symptoms we were leaning towards an issue with his shunt, the nurse Phil spoke to agreed and said “Call an ambulance”. Not really words you want to hear on Christmas eve, or any other time really.
Phil rang 000 and when he was put through to the dispatcher it turned out to be a friend and fellow SES member Sally. Talk about Adelaide moment. Alex was calmer than he had been but by no means his usual happy self and when the ambulance officers arrived and tried to do his obs he wouldn’t have a bar of it. Jenny capitalised on their lack of concentration on her to cheerfully investigate the defib gear they had brought in with them, though fortunately she was unable to turn it on. Quickly grabbing necessary bits and pieces we headed for the ambulance only to find that Alex REALLY didn’t want to be strapped into the bed inside. The only place he would even consider sitting still was my lap, so with the seat belt around both of us off we went.
Arriving in Triage at WCH means you go through into one of the resuscitation rooms until they assess you and find a spot for you in E.D. Alex had calmed down enough that he let me put him down on a bed, and once he was horizontal almost immediately went to sleep. This lent further weight to the idea that there was something wrong with his shunt, since when you lie down the pressure of the fluid in your head is reduced, and in essence the shunt is a pressure valve. The big relief was that after he had spent some time lying down Alex was able to speak normally again, although it was quite slurred.
Paperwork all done and in an E.D bay, the unsurprising decision was reached to do a C.T scan. Unfortunately Alex was still really edgy and wouldn’t lie still, so he was given a sedative. C.T successfully taken, we went back to E.D until a bed could be found in one of the wards. While we were waiting the nurses accessed Alex’s port, the unfortunate part about a sedative, for Alex at least, is when it starts to wear off he gets really cranky, and the even more unfortunate part was that this happened right as he was being accessed. Alex is small for his age and currently tips the scales at 15kg and it took 3 of us to hold him down while a fourth nurse accessed his port. We then had to hang on to him for another few minutes as he was hell bent on deaccessing himself. All the effort wore him out and he went back to sleep, and when he woke he was not at all bothered by his ‘tails’.
The C.T scan didn’t provide any definitive answers so Alex was sent for an MRI. He had been sleepy for most of the time he hadn’t been really cranky for, but when I told him we were going to smell colours he went into happy overdrive. Introducing anyone who would listen to his friends – puppy, blankie, and Elmo – though his speech was still noticeably slurry it was close to normal. He went in at 3pm and was out about 2 hours later.
At 6pm the nurse came by to tell us that the neurosurgeon wanted x-rays as well, so for the third time that day we went down to radiology. By this time Alex was his usual self and we were able to persuade him to lie still for the x-rays – thank goodness no sedatives required!
The interim conclusion reached from looking at the scans was that the shunt was in fact not blocked, but working to well – overdraining. This causes the brain to sink lower in the skull and puts pressure on the lower parts of the brain and the brain stem, hence the problems Alex had with his speech. It’s not as big an emergency as the build up of pressure is (Hydrocephalus) but still causes significant issues. The good news, which was somewhat lost amid the shunt drama was that the MRI result showed “no disease progression” which is the best result we could hope for. The bad news for us was that the consultant neurosurgeon was going to look at the scans and form a plan of action – in the morning.
So Alex and I spent Christmas morning in the hospital, all the plans for the day up in the air. Dr Amal came to see us at 10am and confirmed the diagnosis of overdraining, the reason it seems was simply that Alex had grown, and the extra few centimeters were enough to disturb the pressure balance, the solution is just as simple, remove the old shunt and insert an programable shunt, which can be adjusted to match Alex’s growth. Then Dr Amal gave us the best Christmas present ever. Since overdraining, while a serious problem, isn’t as dangerous as the shunt being blocked, as long as Alex spent a reasonable amount of time lying down, we could go home for the rest of Christmas. Alex is scheduled for the shunt replacement surgery first thing Tuesday morning and will be in hospital for a few days to recover, but all things being well he should be home for new years.
So we ended up with (mainly) the Christmas we had planned, spending time with both our families, being grateful for all the little things you take for granted until the prospect of having them taken away looms before you.
It’s been quite a year all things considered, let’s hope the next one is a bit more peaceful!
Wishing you all a happy and healthy 2016
Jo
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