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!

Recovery Day 1

After the Dr coming round and being a little concerned that she hadn’t woken or spoken, Immi woke up at about 11pm last night and had a little soup. Her head has swollen a bit but nothing abnormal. There is potential for this to increase before it decreases. She has walked to the loo this morning and is talking (but grumpy!) At present she is happy to sit and watch her ipad and just rest up.
I slept well at RMcDH and Murray has gone over now for a nap after a long night on the ward.
Will keep you updated.  Thanks everyone. K xxx

Back with us

She’s back on the ward. She VERY reluctantly opened her eyes for a sec and moved her toes and then went on strike. On half hour observation for a while now. Vocabulary and speech are the main concern now, as well as the actual biopsy results of course. Thank you to ALL of you for all your love and support. Xxx PS that top photo is me writing this!! X

Soul surfing

We are in that surreal moment where she is in surgery and there isn’t much we can do and tbh concentrating on anything (including prayer) is really hard but, it is at this moment that being part of God’s family comes into its own....

I feel like we are being upheld at the moment by your prayers. You know when a rock star jumps off the stage and is held up over the crowd and moves along above their heads. That is kind of how I feel at the moment, that your prayers are holding up and not letting us land on the floor in a broken heap. 

I’m not sure how you feel your prayers make an impact, you may not feel that you’re making a difference, but I want to let you know that every prayer, every message, every text is making a huge difference to us, to Immi, to the heavenlies.  I feel at the moment, that without your prayer I would be a crumpled, tears, snotty mess. 

In other news, we have just been given a room at Ronald McDonald House which is wonderful as it means we can tag team and have somewhere to rest, esp while she is on high dependency. 

It’s 5pm now, hopefully she will be in recovery soon.  Will let you know. Xxx

Oh my word I forgot how noisy it is on the ward! Immi had 3 short seizures during the night and the girl next to her had some too, a toy was playing over an over somewhere in the distance and a little baby coughed and cried all night. But we made it!
We have met Dr Bug and Tom the anaesthetists, said a quick hello to Mr Walsh (neuro surgeon), and now it’s just a waiting game until 2ish.
Thanks so much for all your care....xxx

Ready to go

So we are set up on the ward - the same bed as last year- all booked in, consent signed, bloods taken, trifle eaten (Immi that is!) we have only eaten jelly babies so far! Both surgeons are happy with the finger and they have added an infection check in the bloods screen (so do keep praying as we aren’t quite out of the woods yet).
Immi is in good form and we should hear in the next half an hour if there is a space at Ronald McDonald House.
The surgery is planned for tomorrow about 2pm, so she can’t eat anything tomorrow morning.
Will post more tomorrow. Xx

Off we go.

After a pretty restless night, we sent a photo off to the surgeon this morning and he replied that we should be ok to do the op, so we packed up the car and have just left. Immi has developed a bit of a cough this morning so hoping that’s just a morning thing.
Thanks to everyone who has sent thoughts, prayers and practical help. We will keep you updated. Here are couple of  photos; the one we sent this morning for those of you more medically inclined who would like to see the progress! 😉 And a beautiful picture drawn by a lovely friend and artist, Dani Godden which has been so poignant over the last few days...x

Down to the wire

So we are pretty much packed and the neurosurgeon has just rung about Immis finger. He said if there was any chance of infection he wouldn’t want to do the op. We sent him a photo via messenger and he had a look and was unsure. He has asked us to send another photo at 7am tomorrow morning (we would be leaving at 8am) and the decision will be made then. Please please pray the finger looks much better in the morning or the whole thing will need to be postponed (his next a lot is just before her birthday whichever I think we may struggle to get her to agree to).
Feeling pretty stressed out now. We are all psyched up and really just want it over and done with now.

Pre op stress update

I was asked to phone the ward this morning to give them an update on her finger (which is looking a bit better this morning btw!) The nurse spoke to a consultant who said they would speak to our neurosurgeon and if he was in any doubt he would call us. If we don’t hear anything come in as planned.
So we are spending the day packing, buying some button up pjs, and having an ice cream somewhere ‘Nauti but nice’ (locals to Penwith will understand that ref). But we are left with some uncertainty and it’s not comfortable. Prayers for peace to reign are very welcome! Xx

Pre op stress

So we are sat at A&E on Fri eve before surgery on a Tuesday. This evening Immi came to me and showed me her finger. “My finger is sore,” she said. I looked and the finger around. Her nail on her middle finger of her left hand was red, sore, puffy and painful looking. My immediate thought was - what about Tuesday?!
After a bit of deliberation I called our gp surgery, but of course it was too late; closed until Monday. I wrote to some friends whose children have also had surgery to see what they thought. Considered calling 111 and then realised that I have the phone number of the ward in Birmingham that she will be on.
I have them a call and they told us to come straight to the walk in. So here we are, having just been told she will have antibiotics.
Yet again the nhs have done us proud. So thankful we can get prompt, effective treatment that means hopefully she can still have her surgery.
If you are a pray-er, please do pray this doesn’t effect her surgery.
We will keep you updated xxx

Immi’s journey

I’m sitting in bed writing this, with one of the bravest people I know idly stretched out beside me. Brave because she daily faces hurdles and difficulties most of us will never meet and for those of us that do, they are likely to be short lived, like a broken arm. But brave too, because she - with us- has had to make the biggest decision of her life and she chose bravely.

As many of you will know, we have not been able to find any med or combination of meds that would halt her seizures, and the Ketogenic diet did not help either. The type of seizures she has are very unlikely to be helped by Cannabis based meds (yes, we have researched and yes, we have talked to the doctors about them), and so the neuro team felt we should start pursuing the surgical route. 

So over the last couple of years Immi has had many scans and tests; sleep deprived EEG, 5 day EEG, Surgical EEG, PET scan, MEG scan and a number of MRIs, all under GA. 

The plan was that the Surgical EEG might pinpoint an area of the brain that  could be removed or disconnected, however, sadly her seizures were too generalised and wide ranging. 

The team reached a point where they were going to diagnose a disease called Rassmussen’s Encephalitis, see https://www.encephalitis.info/rasmussens-encephalitis

However, RE is only diagnosed where there is unilateral (one sided) Epilepsy along with other symptoms - all of which Immi has. The surgical EEG showeved activity on both sides, although all other scans up to this point had been left sided only. So, after some discussion of the wider team it was felt that a biopsy should be done to try to confirm RE. This involves taking out quite a large chunk of brain matter from her temporal lobe (from the area that shows damage using the PET scan imaging).

It has been a really difficult decision for a number of reasons;

Firstly, RE is an uncurable degenerative disease, the only way to stop its progress is a Hemispherectomy which runs its own risks including damaging speech and vision. 

Secondly, biopsies for RE can be inconclusive. If the result is negative, it doesn’t mean the patient doesn’t have RE, they may have just tested the wrong part. 

However, Immi hates the seizures, she calls them her ‘nightmares’ and when I asked her why she wanted to say yes to the surgery she said it was her only hope. 

To be honest she is scared, we are scared. As her parents we desperately hope we are doing the right thing, it’s an awful choice to have to make. I so don’t want her to have to go through this. But the information we have at the moment along with Immi’s feelings about her life at present  have brought us to this decision. 

So on the 20th November we will head up to Birmingham Children’s hospital for her surgery on the 21st. 

We don’t know how long we will stay, that will mainly depend on her recovery, how much swelling she has etc, but we value your prayers and thoughts as we journey this path. When we were in for the surgical eeg many of you read the daily blog and your messages often kept me going, so I will try to do the same this time too.

There is a Bible verse that keeps flying round my head - one many of you may heard of as it is from a famous Psalm, Psalm 23. The Psalm likens God to a shepherd that is lovingly looking after his sheep and the verse says “Even though I walk through the darkest valley I will fear no evil, for you are with me; your rod and staff they comfort me.” I’m going to hold onto this one for a while!