Tuesday 17th September
Matthew and Ben are both sound asleep upstairs. Emma is recovering from a night spent in chair by drinking gallons of tea and catching up on the Great British Bake Off… I’ve just spent the last 5 minutes making baby bottles, and shaking them in the style of Tom Cruise from cocktail – no, there is no video of this, sorry. But next time…
…All seems right with the world. It’s great to have Matthew home….
Under pressure – pushing down on me…
It was a very long night, but Matthew is now on an additional medication for his blood pressure, which appears to be under control. Emma spent the night camping in a hospital chair beside Matthew, she didn’t get much sleep. It would be fair to say that Emma is currently doing a great Zombie impression. But it all seems to have paid off. Matthew is doing much better.
I got text messages from Emma at every blood pressure reading this morning. It was a series of steadily decreasing figures – all great news. His blood pressure continued to decrease to a relatively normal figure today.
Like wise the Doppler exam on his heart came back perfect! – Everything is spot on.
The neurology team kept Mattie in until this afternoon to ensure that his blood pressure had stabilised. To get there though his whole prescription has been modified.
In addition to giving Mattie the blood pressure drug, the doctors have also accelerated his Prednisolone (steroid) weaning process. A side effect of Prednisolone is increased blood pressure, and Matthew has been on a lot of it. To give you some context, as an adult if we were prescribed a steroid it would be about 15mg per day. Matthew has been taking 40mg per day!
Hospitals are full of sick people – who knew?!
Another side effect of Prednisolone is a weakened immune system. Matthew will be able to catch bugs much more easily while he’s taking the drug. As one of the doctors outlined to Emma today, being in a room full of sick people while on this drug is not a good thing – we’re delighted to have Mattie back home.
Accelerate the Spasm Treatment
The goal of the steroids had been to try to address the Infantile Spasms. They haven’t completely worked – we have seen a reduction on both the severity and frequency, but the spasms are still there. With their withdrawal the neurology team have increased Mattie’s dose of Vigabatrin, the anti-epilepsy drug.
Wow the “Cranky Baby Week” really has come to an end! – Emma reported that she couldn’t get Matthew to relax and sleep last night he was all smiles and giggles, playing and using his hands. – That’s something Emma and I are watching very closely. Infantile Spasms can produce developmental issues so we’re constantly watching and noting his progress. This is why both Emma and I were delighted to have a playful non-sleeping baby.
Mattie’s good mood seems to have carried through to today – he has been great craic today. Long may this continue!
Possible Spasm Reduction ???
In addition to all of this; the types of spasms that Mattie has been having have also changed over the last day. Instead of the full body jerk he originally presented with, we now have slight twitches, small jumps, and the odd weird eye movement. Over all these are less aggressive form of spasm – we’re recording them all same though – just in case.
A tooth! – A tooth! My Kingdom for a tooth on steroids!
It arrived! The tooth fairy has delivered. We have a tooth! – Just a small one at the front, but it is here. Wow did Mattie earn that tooth. He really seems relieved to see it arrive too..
All in all
It’s been a good day so far (touch wood).. let’s hope this continues through to the weekend….