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! 

The dog betrayed me...!

This my friends is one of the more interesting aspects of being a parent to a child with ASD....
As you can tell, Immi was not at all happy with her Dad (not to be referred to as Dad at this precise time of course!) But what were the actions that had led up to this? Had dad been unreasonable? Let me unfold the evening for you...

1.Immi had snuck chocolate up to her room.
2. Aforementioned chocolate was all over her room.
3. Immi took the dog to her room.
4. Dog ate ears off chocolate bunny.
5. Dad aka Mr A M Golder (!) took rest of chocolate bunny and threw it in the bin and told Immi the dog was not sleeping in her room.

Immi was NOT happy. Lamenting ensued and then at about 11pm this note came through the door.

We explained that we weren’t being mean but it was a consequence of her putting the dog in danger...more lamenting and crying. At about midnight I heard noise and went to investigate. This is what I found...

Apparently the dog had betrayed her!

No words! No words! This my friends is called mind blindness, where there is a total inability to see anyone else’s point of view. Not even the dog’s - who by the way she considers to be her brother which is very frustrating for her real brother!

She eventually fell asleep about 1am I think and it remains to be seen how she will be this morning!!!

Lessons from Newton

So Immi got a newton's cradle for Christmas. On Boxing Day a friend put up a post on FB about her son's tangled Newtons cradle and I sat there with a mix of relief and smug that we hadn't faced that problem. Two days later that smug was wiped away as I found the Newton's cradle completely tangled up in her room. 

I angrily took it downstairs and started work on it - if my friend could fix theirs then I could fix ours - I worked on it for a long time, a bit obsessional really, I ate my dinner as intermittent mouthfuls between untangling. My husband came in periodically, initially to sympathise, eventually to try to rationalise but the untangling had taken on a deeper meaning for me by then. For I began to realise that it felt a bit like our life. 

 Everything had been going swimmingly, according to plan, just like the Newton's cradle, rocking gently sending its kinetic energy thought to the next thing, totally predictable, but along the line catastrophe struck. For the cradle, it was dropped and turned and got into a terrible tangle, for us it was Immi's health and the impact it had on our whole lives causing a change in country, work, home, schooling, etc. For many of you there will be some other turning in life that caused a wipeout that you have struggled to recover from.

https://upload.wikimedia.org/wikipedia/commons/1/1d/Newtons_cradle.gif

I thought the Newtons cradle could be fixed but 5+ hours in, at midnight, with my eyes shot, I admitted defeat and went to bed (in tears if truth be known!) Murray had a look at it and took the strings off the frame where I found them in the morning when I went down. 

The truth is, in the natural, some things can't be fixed, some things have to be thought of and changed laterally. To find a different way, a new way, not the normal way. I wanted to go back, to retrace the tangled steps and untangle the wires, but it couldn't be done (and even if it had, where they were untangled they were all bent and crumpled). What needed to happen was a restoration, a renewing and recreating. 

It's like that when catastrophe strikes, when you get wiped out by life and its consequences continue on into the future. You can't retrace your steps, go back and unwind it. Instead, something new has to be created. I am stubborn - 5 hours of non stop pointless untangling kind of proves that point!  I would have probably continued today if he hadn't taken the wires off the frame, because it's just string, of course it can be untangled!! But thankfully someone else stepped in to stop my crazy! 

I spent a long time fighting the inevitable - that the cradle needed new wires, but I have also spent a long time trying to untangle and fix life when actually it needs a rethink, it needs a new way.  We need to find the new normal, the new way of working, ministering and being even though it's all a bit broken and tangled, and in that process maybe God will come along, rewire life, show a new way and create a new and beautiful thing.

The elusive ice cream...and an update.

We finally made it! We finally got to the beach for an ice cream!
My head shouts "Dont be ridiculous, of course you can get to the beach for an ice cream!" But here's the back story.
On Thursday the weather was glorious. We decided to drive to Poldhu as it is a really accessivle beach and thwy have the best coffee. We drive over, only to find that even with a blue badge there was absolutely NO WHERE to park. Couldnt even park on the double yellows as they all had no stopping signs on them.
So we drove back towards home (I have to admit to having a really bad attitiude at this point!) and decided to stop at Praa sands for an ice cream. We parked up, walked down the steps to the Beachcomber cafe and got in the queue. We saw a friend and started chatting and suddenly...chaos. In the middle of a long queue Immi went into full blown Tonic Clonic seizure, out on the floor, wet, the works. It was a long one...5 minutes. The sort that seems to go on forever and then she finally starts to come.out and trues to stand and then drops back in again. Loads of people offered to help and the owners kindly let us use their bathroom when she was finally able to move. We sorted her out, climbed the steps (Murray had gone to get the car) and drive home. Immi spent the rest of the day on the sofa.
Fast forward to today, the first day since with no rain. Murray is at work and we were in the house. Anyone who knows me knows that I dont do well being stuck in the house. But I realised I have also begun to be really nervous taking Immi out on my own. She wanted to go to the park with the dog, but coping with the dog and her during a seizure is just too much. She had quite a large seizure at about 10am so I bathed her and washed her hair afterwards and then we finally thought about the day. Most people in Britain go out between the showers. I feel like we aim to go out between the seizures! Having had one already I wrote to Murray and told him how I felt; trapped but nervous. He suggested we try Praa sands for an ice cream again. So I gathered my couragr (and the emergency bag!) and we set off. There is a shop in Praa Sands called R and J Supplies. It is a fun place with lots to look at. They have lots of flamingo things at the moment so Immi wanted to have a look. We decided to buy a couple of things, but theit card machine wasn't working so we popped next door into the Post Offic3 to get out some cash. I was just in the process of getting my cash when she went into another seizure. Again like the firat one today 5 minutes with dropping in and out...and wet. They didnt have a loo so when she was finally able to walk I put her into the car -wet and decided on our next move. I wasnt going to give up again so... There is a caravan site nearby that we use off season as rhey have a pool open to locals, so I drove up there and they kindly let us use their disabled toilet.
Finally we were able to drive down the hill again, pay for parking and get the elusive ice cream! The beach is lovely today, and its warm. It was worth it!

Finally, many of you have asked how Immi is now, post surgery. She is ok, the hair left in the middle falls both sides and hides the wounds and shaved parts so that is good and the wounds are all healing well. Just lots of seizure activity continuing.

A Big Week - day 12

This will probably be the last post for a while as we are finally in our way home! Yay!
We popped back to the ward this morning after staying at Ronald McDonald house, to have Immi's wounds checked and redressed.

 It sounds silly but I felt quite emotional saying goodbye to the ward staff. I know its their job and over the course of a year they see hundreds of children come through the ward but their knowledge, care and strength makes us as parents feel safe and that is huge.

 To us in the UK hospitals feel like safe places; in the main, places to go and get help and healing. It took my mind to the footage I have seen recently of hospitals in Syria where neither patient or staff feel safe. I am thankful. We dropped off sweets and a card and Immi gave lots of hugs and we left to pack up our temporary Ronald McDonald home.

This charity too, is amazing. No doubt most of you have seen on the counters at McDonalds the little change collections or the little child height collection buckets where you can put in a coin and it spirals down getting faster and faster until it plops into the bucket. I had seen these in McDonalds and I hadn't taken much - if any, to be honest - notice.

Well, that has changed! Ronald McDonald homes are located close to many major hospitals in the UK and are an amazing resource to thousands of parents. The rooms are Premier Inn-esque and each floor also has a TV lounge and fully equipped kitchen. There is an area in the fridge allocated for each room and a cupboard for each. There is a laundry room downstairs which we utilised a number of times and the phone in each room links directly to the ward your child is in so you can sleep and know that staff can contact you easily.

 Each family accommodated leave a deposit (which we donated at the end) but however long is needed the rest is provided by the charity. Our stay was relatively short, we met a number of families that have been in the hospital for months or even years.

Without this resource these people would either not be able to stay near their child or would have to pay for hotels which as you can imagine would build up cost wise very quickly. We are so thankful for this place. Our friend Sarah had offered her spare room about 20 minutes away but this has made it so much easier and has meant that we have been able to take breaks and tag team so much easier with each other.
So next time you are in McDonalds please do drop a bit of change in the box, we and many others we have met this week thank you!

Thank you too if you have followed our journey this past few days. I will take a little break from blogging now but will write with any significant updates or changes. So many of you have commented either on the blog or in Facebook, sent love and best wishes or given to help us with expenses. Thank you, thank you, thank you, your live has held us and strengthened us. Be blessed xxx