Home again

Getting home yesterday was soooo nice. Though the drive itself was not – Pudding cried most of the way. Don’t blame him at all – I probably would have done too, if I’d been through the same thing.

The operation went just as planned, and the new port (or intrathecal drug delivery device – IDDD – to give the correct name) seems to be in the correct place within the spinal membranes and is working fine. We have strict instructions not to let anyone touch that one EVER unless they know exactly what they are doing. If someone mistook it for an IV port and tried to access it for drawing blood or injecting something in, the risks would be tremendous.

Pudding after opThe surgeon had said that all being well we could go home on the same day, but I knew that was very unlikely to happen. Poor Pudding is one of those individuals who just doesn’t deal with general anaesthetic very well. When he finally woke up he didn’t seem too unhappy but I held off from giving him any food as I knew by now that he was likely to be sick, and he was. More anti-sickness meds sorted that out and he was soon eating and drinking again. Any attempts to sit him up brought on more crying though. This was very likely due to the loss of cerebrospinal fluid during the operation which can lead to a horrible dehydration headache – think of a bad hangover!

So it was inevitable that he had to stay overnight on a different ward. Again it was Hubby who drew the short straw and stayed in with him, while I retired to the hotel for the luxury of a nicely cooked meal and double bed. I felt (a little bit) bad but driving home after listening to crying children all night would have been a disaster.

The next morning he seemed a lot brighter, but was still wary of any movement, probably due to pain from the two incisions – one on his side where the access point for the new port is, and one on the back where they went into the spine. One of the nurses on duty recognised us from the weekly ERT sessions. She knew what Pudding is normally like, running up and down the corridors, so took us seriously when we said that he wasn’t himself. More painkillers, another visit from the neurosurgery team and a few hours later he had brightened up enough to be released.

Yet again, we left the hospital feeling so grateful for all the care we have received. The NHS is a marvellous thing and long may it last.

It was a little bit weird driving home after being in the hospital bubble for the best part of two days. Since then, it’s been sofa, sleep and TV. So much for my worries about keeping him less active after the operation; I think he’s going to have a slower recovery than I expected. Fine by me – the slower he goes, the greater the chance of no complications!

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