Monday, 12 December 2011

Stop the ride, I want to get off!

My head is spinning; the last 4 days have been like an exaggerated version of the last 7 weeks.

On Saturday morning I popped in to see my lovely Jake before starting my weekly journey back to Poole for the night. I made it home just before my friend was due to arrive for an evening of 'Strictly' and pizza. And then the phone rang. Jake's chest infection had worsened and they were talking to Neuro ITU to see if would be appropriate to move him back to an ITU bed and they promised to call back once the consultant had visited Jake. This is the point that you realise you've let your guard down, hold your breath and the piece of string that you had forgotten was attached to the bottom of your ribs is sharply tugged.

They called back and reassured me that the consultant thought Jake would be OK, didn't need to be moved and that he didn't think it was worth me racing back up to London. Sister in Law confirmed that she would go and sit with him, so pizza was ordered and 'Strictly' was watched.

And then the phone rang, again. Jake's infection had developed into sepsis a "severe illness in which the bloodstream is overwhelmed by bacteria causing major organs and the central nervous system to stop working properly". His pulse rate soared to 150, his BP plummeted to 80/40, his oxygen saturation was dangerously low and his temperature peaked at 39.1. I don't want to be melodramatic, but you have to realise that sepsis is incredibly dangerous if you are fit and well; Jake is still very seriously ill.

At this point I'd had a couple of glasses of wine (I won't be doing that again!), so fabulous, teetotal friend stepped in and we raced back to Tooting, which is an awfully long way out of her way!

At the same time that this was all going on Jake's head filled with CSF (cerebral spinal fluid) and it was unclear whether this was caused by the sepsis, the hydrocephalus they'd already identified on Monday's scan, or a bit of both.

The next 24 hours were terrifying as all we could do was hold his hand and will him to fight, which he did, magnificently. In fact one of his lovely nurses declared that she has never seen someone get over sepsis so quickly!

So, we arrived back at Sister in Law's flat on Sunday night feeling a little less terror. And then the phone rang, again. The neurology and surgical registrars had been looking at Jake's latest scan and felt that they needed to do something about the CSF, that they were going to do another lumbar puncture and Jake would be nil by mouth overnight in case they "needed to do more surgery". You have to remember that Jake was still fighting off sepsis, so the suggestion of putting him through more surgery at this stage seemed crazy. Consequently Sister in Law and I had a horrendous night fighting off evil thoughts and called the hospital in the morning to be told that nothing had happened as the Neuro ITU consultant had been back and pretty much said 'why would you put him through more surgery when he has sepsis, that's crazy'!

So we reach Monday and the long planned visit of Mother in Law, Father in Law and Brother in Law; this is a big deal due to various health issues and we were a little worried how this would go in the context of a very difficult weekend for Jake. Well, I don't mind telling you that it was just about the most moving thing I have ever seen and it reminded me that sometimes, you just need to see your Mum. Jake was alert (I don't know where he gets this extraordinary strength from, but I'm very grateful), gazed lovingly at his Mum, reached out to hold her with both his hands and smiled for everyone. He's amazing.

By this stage everyone (especially Jake) was exhausted and you might think that this would be the end of my tale; sadly not.

Yesterday we were booked to meet with the Consultant Neurosurgeon (the big cheese) who wanted to talk to us about the plan for dealing with the hydrocephalus. Please believe me when I say that I have enormous respect for all of Jake's medical team, who are all amazing; this bloke, however, was a (insert offensive word here). The objective of the meeting was for him to advise us they had decided that because Jake's progress had plateaued and his ventricles were so enlarged by the hydrocephalus, they didn't want to wait for his titanium plates to arrive so they were going to make acrylic plates themselves and do the surgery to fit them and a shunt next Thursday. This is a scary message at the best of times as they usually wait 6 - 12 months to do the cranioplasty, but Jake's will be fitted just 2 months after his surgery. The big cheese managed to spend 45 out of the 50 minutes we had with him sharing how difficult his job is, demonstrating that he hadn't read Jake's notes by talking about how Jake would probably never be able to do things he's already doing, talking about possible complications that there is no evidence of at all and generally scaring us silly. I was mute with shock and fear and if it wasn't for Sister in Law's composed questioning and the lovely co-ordinator's support after the meeting I think I might have been literally broken.

Having come down from the ceiling and really thought about the few useful and relevant things that he said, the conclusion is that this surgery is a good thing; until Jake can regulate the pressure in his skull he wont be awake enough to properly rehabilitate. The surgery is considered to be fairly minor (it takes about 1.5 hours and if Jake was now an outpatient he would only be kept in overnight and be home the next day) and all of his therapy team think it will help.

I know they said this experience would be like a rollercoaster, but I hadn't realised they meant AltonTower's Oblivion. 

So please think of our Jake on the 22nd and do whatever it is you do; hope, wish, pray, cross fingers, chant etc.

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