Well, I’ve been putting off blogging as I just couldn’t (or wouldn’t) get my head around recent events. So we got home from hospital on the Friday evening. BUT we found ourselves back in hospital on the Sunday afternoon. Samuel was having, what we thought was breathing difficutlties when in fact he was having a seizure. A new type of seizure.
So the doctors get out the old faithful Midazolam once again. But although that knocks him out initally, after a few hours he’s awake and at it again.
Now, I should make something clear at this point. Sam has seizures every day. How many varies greatly from day to day – sometimes we have amazingly good days and sometimes amazingly bad days – so it can vary from maybe 5 to 15. But to be honest we’ve never counted. We don’t medicate every seizure. Some ‘seizure activity’ we overlook. We only medicate when a seizure has been going on for about 15 minutes of when he’s having a cluster of say 4/5 (although short) in 30 minutes.
So when I say he was ‘at it again’ I just mean worrying seizure activity that needs medicating.
We stayed in hosptial for the next 5 or so days. And it was awful. The nurses and doctors were lovely but the experience was awful. Sam caught a tummy bug (which the nurses didn’t realise initially and thought the extraordinary nappies were down to the barrel full of medicines he was being given), so although his medications were increased dramatically, he couldn’t experience the benefit of it because his tummy was all over the place. But then his dad caught the tummy bug and had to go home as he was being sick. Then I got it and had, well let’s just so ‘both ends’. I’m not as invicible as I thought.
I asked the doctor, Sam’s Pediatrician, whether this could have been down to his condition deteriorating (the increased manic seizure activity obviously, not the upset tum). He of course gave me the answer I didn’t actually want to hear. Yes. But he said it was too early to tell and we needed to be patient and calm. Patient and calm. That should be put on my headstone.
But to cut a long story short we got out of there. We got the boy home. He finally got over his tummy bug and we had a few very good days before we got a bad head cold which has made him really unsettled. It is only now that the new high doses of his medicines seem to be showing us what they can do.
I shouldn’t complain really we’ve done so well escaping bugs for so long, but with his condition he just doesn’t need anything else in the mix!
We met with Sam’s neurologist this week (she is the top person over seeing Sam’s care and medicines) and she wants us to take the opportunity of the recent hospital stay to think about Samuel’s care plan if things started to go really down hill. I wanted to shout ‘well just do everything’ but I know that’s not helpful, we need to be more explicit about what we mean and in regards to the we, Chris and I need to make sure we are both in agreement. I won’t dwell on this for too long, but it certainly was a sobering meeting. It made me realise that however much our close family and friends are there for us and say that they are on the journey with us, but in that meeting, in that room it felt like it’s just Samuel, Chris, me and the pediatrician and neurologist that are on this rollercoaster.
I’m not sure how to end this post really. Probably made you feel quite glum reading this, sorry.
I’ll post a picture to brighten the mood.