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! 

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!!!