Wednesday, 15 August 2012

At home


We are into our third day at home and I can't believe it! So happy he has lasted this long!

I did get a phone call yesterday though and as soon as I saw the blocked number on my phone I knew it would be the hospital, really didn't want to answer it. Of course I did and it was the Doctor informing me that jaydens urine from Monday has shown a bacteria that is growing and we need to get another sample, bring it in and collect some antibiotics.

Getting a wee sample from a two year old and a 'clean catch' one at that is near on impossible. Especially when that two year old isn't drinking or eating. We are putting water and his formula down his tube and can only do it in small amounts otherwise he vomits, so all a bit tricky. Eventually we did however get a Weeney amount of urine, all of 3 mls If that, and off I went with it to the hospital.

Saw our oncologists upon arriving and he explained to me that the bacteria in his urine is not a nice one. Can't do things by halves our Jayden, if he gets a bacteria it always seems to be the 'nasty one'. Wish they could tell us it's a not too bad one.

Anyway came home with antibiotics and not long after giving it to him he vomited. Damn it, so we didn't know how much he actually digested And have to wait for the next day to give his next dose. Next day is today and his dose went down fine this morning but we are having so much trouble with his NG tube that then end of it keeps coming off and everything slowly trickles out if we are not onto it quick enough which it did not long after that dose and again we don't know how much went in, nightmare.

His nose is bleeding a bit today hoping that won't become a problem. But other than those hiccups everything seems to be not so bad so far. Still have my bag packed and ready to go at the first sign that's something's up which we almost did last night when he woke me looking very unwell but he fell back to sleep and I lay there awake next to him waiting for any sign that things are not good. He was fine and woke chatting away.

to look at him and my intuition as his mother i know that he feels awful but he just gets on with it. Every now and then you see him stop and breath but then it's as if he lets himself recharge and off he goes again. Everyone around him right now is amazed at his strength, there is truly no way any of us would be up and about if we were him.

I'm really trying hard to just focus on today and everyday as it comes because when I let my head think further it's just not fun. Today he is hanging in there and so am I with him. While he smiles I will too. Hoping for another good day tomorrow and the antibiotics he s taking I'm hoping are doing their job.

1 comment:

  1. Fingers are crossed. Jayden is amazing. And you are doing so well Liesl. x x x

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