A few days ago I was browsing through my Twitter timeline when I came across this tweet from @SallyB12Movie
(I’ve retweeted it so you can find it on my feed). Of course mentioning apnea in babies I was interested so read a little more and found that many of the symptoms of a B12 deficiency in babies are the same symptoms that Joshua is struggling with. Having had loads (and loads) of blood tests so far I assumed that he would definitely have had his B12 levels checked so thought no more of it.
Later that morning I got a text from Laura. She’d recently had a blood test and the results showed a severe B12 deficiency to the point that she needs injections (maybe permanently) to put it right! This can’t be a coincidence can it? According to the information I found online it can be passed from mother to baby and if the baby is only having mum’s milk, which Joshua was for the first few months, there’s a good chance he is deficient in B12 too. So I asked the doctors to check his levels and it turns out he’s never had his B12 level checked but “it’s a simple test” they told me, so to save worrying about it lets just get it tested. That was 5 days ago. Blood was taken on the same day and we’re still waiting for the results. And I know, I know, you shouldn’t read up online about conditions because if we did we’d all think we were dying of one thing or another, but you never know right?
Joshua has been more stable this week. Desats and apneas are down to one or two a day and are mostly self resolved. He’s awake for longer periods and is more active and alert everyday. He has become slightly tachycardic (high heart rate) so even when he’s asleep his heart is pumping at 150 BPM where it used to be 100. And he’s gaining weight like a champ! Now he’s 5.6kg with no signs of slowing down. Finally we saw a genetic expert this week who suggested a drug we could try (salbutamol) depending on what results come back from his genetic tests. Thing is they won’t be back for weeks so we’re getting prepared for a longer stay in PICU. It could be worse, the staff here are lovely, the WiFi is working again and we’ve finally qualified for free car parking which in the centre of Birmingham is a real plus! Let’s just keep our fingers crossed for these results.