Recovery Day 10

I haven’t posted for a few days, mainly because I have been in bed, ill, for the whole time. This is the first day I have actually been able to sit up in bed, let alone get up. I’ve also stayed away from immi as I have had a temperature and blinding migraine and pressure in my head/neck, so whatever I had I obviously didn’t want to pass on to her.
Murray has been an absolute rock, looking after us both and keeping everything going. The nurse came to check Immis wound yesterday, apparently it has opened a little at the top which we need to monitor closely and take her to the walk in if it gets worse. She is still very tired and in pain, the neurologist said he doesn’t want her back at school before Christmas, although with her school right next door, we may allow her in for an hour at a time. We won’t do this while the wound is still open though.
If you are a pray-er, please do pray for protection from infection in the wound. I am very aware that’s I am obviously full of germs at the moment and am concerned for her in it all. Also please pray I get better quickly, I don’t remember ever feeling this bad and I have never stayed in bed for 3 days - but I I just haven’t been able to move - has been horrible, but I need to get well!
Finally please pray for Murray’s dad, Andy, who is in hospital in Glasgow after a massive heart attack on Tuesday, they have kept him in and hope to do a valve op, but we don’t know when that will be.
It feels very full on atm, and I feel very easily overwhelmed.
Thank you all for your love and support and if you have messaged or texted over the last few days I’m sorry I haven’t replied, I’ve been totally out of it.
K xxx

Recovery Day 7

So we are home, but oh my word I cannot believe how exhausted, emotional and yuck I feel today! Immi is doing well, she is sat watching DVDs, still a bit swollen but not much pain and no seizures so far today so that’s all good news. I on the other hand feel a bit like a computer that has crashed! There is a bit of a standing joke in my family (and at work) that I leave all the tabs open on my computer and my brain tends to work similarly. I think I may have frozen!! I am struggling to get my brain to function at all and am not sure if it’s just an emotional crash down, a reaction to the rubbish food I’ve eaten over the last couple of weeks, or if I’m fighting a cold. Either way, feeing pretty rubbish and just concentrating on looking after Immi, feeding the family and getting washing done!

In this place though, I don’t want to have a big pity party but rather, shout out to all the parents who are caring for children and loved ones over months in hospital.  How they keep going and keep giving is astounding and so admirable. So to Anne travelling from Tewkesbury to BCH each week at the moment and to Chris who basically lived at BCH for a couple of years. My love and greatest admiration to you.
With loads of love,

K xx

Recovery Day 6

After spending the night at Ronald McDonald House with Immi - just one seizure at 6.15 this morning,  we popped back into the ward to be discharged.
Immi still has a way to go; still swollen and needs wound care, and her right foot is dropping more than before, but we can go home.
They very sensibly put in absorbable stitches so we would have to journey back up but we have to keep it dry or they might disolve too soon.
We are so proud of how she has managed, now the biggest challenge is to keep her safe while she heals- she isn’t great at limiting herself- and is a bit clumsy at the best of times!- and a fall (from a seizure or otherwise) could do a lot of damage at this point.
We value your thoughts and prayers as we take her home. Xxx

Oh nearly forgot, a lot of people have asked about the results of the biopsy. We asked how long it would be and they said it will be quite a few weeks. 3-4weeks for histology and then it will go to national discussion team and only after that when they have a direction will they get in touch with us. Xxx

Been in and out, just about to leave and she has conked out!!

Recovery Day 5

Last night and this morning have seen an increase in seizure activity so we are back to how it was before (though nothing more), not quite as swollen as she has been, though a little more pain,  but the good news today is that we have been released to all stay at Ronald McDonald house tonight with a view to driving back to Pz tomorrow.

Recovery Day 4

Hi all,
Things are still going well, but slow. Yesterday Jess came to see Immi (and us!) It was a really precious time and was so lovely, there was fun in our little area with the wii in full use and Enoch a volunteer running the games with Immi and her pal in the next bed!
I think she may have overdone it a bit and was wiped out in the evening!

Today, when I arrived this morning she was still sound asleep, but had taken her dressing off. (Gory photo warning below!) She took a while to wake up (which isn’t at all unusual) and was pretty grumpy til I had managed to get some food in her and get her washed and into some clean pjs.
She desparately wants her hair washing but we can’t wash her hair for 7-10 days as her stitches are dissolvable, so I’ve (very carefully) brushed her hair out and loosely plaited it. She is happily sat now watching her iPad.

She will be reviewed tomorrow and we will know more then.

Recovery Day 3

It’s the weekend at the hospital which means the hustle and bustle dies down but it is more boring! Immis swellingseems to be changing through the day, much worse after lying down all night but then kind of moves down her face over the course of the day as she sits up! She’s amazingly not in too much pain, but is struggling to leave her eye alone, rubbing it quite hard (which makes my toes curl!!)
Mr Walsh came round yesterday afternoon and Immi quizzed him about which muscles he had cut etc (they cut through the Temporalis muscle at the top of the jaw if anyone is interested! It’s the one you feel if you put your fingers in your temple and clench your teeth.) He said he wants us to stay in over the weekend and he will reassess on Monday.
Yesterday we some wonderful friends drive all the way up from Truro to see us and today Immis ‘birthday twin’, Jess, is coming from Derby. We haven’t seen her since we were here last year so we are looking forward to seeing her.
Everything is going as well as can be expected and we are thankful to the whole team around her and us - and that includes all of you!
With love, K xx

Recovery Day 2: swelling

Morning everyone! We were warned this might happen; the swelling and bruising have started to come out, her left eye is quite swollen and sore and she is not happy with us at all! She keeps playing with her eye saying it feels funny and won’t leave it alone. The lad in the bed next to her and Immi are getting on like a house on fire, watching films, playing wii and chatting together. He is the same age and cognitively about the same level too, to it’s nice for them both to have a bit of company.
She is on ibuprofen for the swelling and paracetamol for the pain, she won’t take the morphine based drug as it can only be given in liquid form and she will only take tablets.
Think today may be a long one as she gets bored and fussy!