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

A Big Week - Day 11

We were hoping to stay at Ronald McDonald house together yesterday and then drive home today but things didn't quite work out like that.
Immi wasnt quite herself all day, staring into space and not responding to her name, sonwe decided to spend another night on the ward.
We went over to visit a friend on another ward and when we came back she went very quiet and fell asleep very early.

However, she kept half sitting up, opening her eyes, her pupils huge and staring into space and wouldn't respond to her name. Or stretching, hahlf opening her eyes with her eyes rolled back. It was happening really frequently so I called the nurse over and neither of us were sure if it was seizure related or sleep related. Eventually she fell asleep properly and we woke her at 9.30 this morning. Its quite a feat to stay aleep on a ward this busy!

Anyway, she seems a lot like her normal self today. A minute seizure in the middle of the day so far, but that is quite normal for her. We are being discharged to Ronald McDonald house and the bed will stay open over night while we are there, just in case. We will pop back in the morning to have her wounds checked and then hopefully we can start the journey home!

Immi and Emma the play worker (and very patient!!)

We also heard today that Immi has been awarded a place in the local Special Needs school too, so she will have a couple of transition sessions next week!

A Big Week - day 10

Well after playing hokey Cokey with the theatre last night we finally got down in the evening and after an hour Immi came back electrode free.
She came round quickly and ate a double cheeseburger and milkshake (as you do after being starved for over 24hours!)
And shortly after that unfortunately had a seizure. A long seizure. The staff were all ready to give emergency meds but we discouraged them and she started coming out at 5 minutes.
Her head was still weeping a little so neither of us slept well, on and off all night. At 6.30 she had another 5 minute seizure and then about an hour later another minute.
They have said she can stay on ward another day so we can all keep an eye on her.
We always knew this surgery was only for investigation but it is a bit of a shock that the seizures are back with such vengeance. To be totally honest I am tired of it all. I just wish she didnt have to face this every day.

On another note however I just want to highlight the amazing team that we have had around Imogen this week. From Mr Walsh the consultant to all the neuro surgical team, to anaesthetists, to Darren and the neurophysiology team, to Alia the ward sister in ward 10 and all her amazing  nursing team, to Emma the play worker, to Karen and Lou the amazing housekeepers on the ward that put everyone at ease. Everyone has been amazing, caring, helpful and kind. Yes, yesterday was a bit tough on Immi with the wait around for theatre but to get it in perspective, she was bumped because they needed to do potentially life having surgery on a baby.  Can't complain about that!

Immi and Darren (neurophysiologist).

A Big Week - day 81/2 & 9!

As I write it is still actually day 8, but the adrenalin has again kicked in and I can't get to sleep.
So after two seizures today, a third cannula blown and one electrode pulled out, we have been told that they will probably operate again to remove the electrodes tomorrow.

She is on the reserve list, rather like being on standby at an airport waiting for a flight, so it depends what emergency ops need to be done or if anything planned fails to happen for any reasons then Immi will go in. Thankfully it is a shorter op than the first, but it is still an op all the same and removing the electrodes leaves her open for infection. I thought I would be calm, a kind of packing up to go home, but as I sit here in Ronald McDonald I find myself unable to sleep and wishing that I was with them on the ward.
Finally fell asleep after realising that I think the cafe must have given me a full caf not decaf coffee as I had asked for!

Sat waiting now to go to theatre. She had her meds before 7 and so now we wait....

Update....they have decided to do some electrode stimulation this morning and then the op later today (if it happens). What does electrode stimulation mean?
She has 16 electrodes in her brain that literally been recording her every move and thought! When looked at on the trace it can be seen that the activity is quite spread out and general but there does appear to be one electrode that leads the others my a millisecond or so. So this is the one they will send a small current through and see if they can stimulate a seizure. By doing this it may show that this is an area they could operate on. To be honest I think its a bit of a long shot as there is so much activity in the electrodes but who am I???!!

Update 2 (can't get it to shift from central justification!)

So they did a good long session of stimulation as Immi has been shiftwd to the afternoon op slot. However, despite stimulating every electrode and then the one that was most promising given a higher current we failed to stimulate a seizure. The initial deduction from this is that her seizures are really quite generalised and it may be unlikely that they could operate with any measure of success. Having said that, it is very initial broad brush srokes and all of the readings of the week will be read and taken into account. From this they will make a decision about anything thwy may be able to do. 

So now we are sat waiting for the operating theatre. Immi is hungry now as she hasnt eaten since last night and all the other patients are eating. 

Feeling a bit dispondent if I'm honest. Really dont want her to have to live with this horrid disease for the rest of her life. 

Update 3

So its 1830 now. Immi is off monitor now but hasnt eaten for 24 hours and hasnt drunk since 10am. She just had the mother of all seizures and has a stinking headache now. We really want to give her some food and drink but they are saying she is still going to go down next. 20 mins in and she still isnt speaking yet. Please pray they either take her down soon or phone and say it will be tomorrow. 

Update 4 

1850 went to theatre. 1910 back on ward...had to postpone as a baby needed looking at again. I have asked if it looks like it will be a while can they please bump her and let her have some food. Will keep you updated. 

Update 5 (hopefully the last one today!)

They took her to theatre again at 8pm. At that point there was a question as to whether they could do it as we had been told to give her her evening meds so she of course had liquids (about 80ml). But the consultant was happy for her to go.

Hopefully there will be no more big news to update you til tomorrow!

A Big Week - Day 8

Day 8??!! A week is only supposed to have seven days isn't it?...this week is too long!

Well on the plus side Immi had a 4 min seizure at about 8pm last night. So that is helpful.
I'm not sure I should write first thing in the morning really. Yesterday evening Immi's canula (the tube in her hand) got stuck so they had to change it. It has to be flushed out with water to keep it clear and the gap between flushes had been a long one. So they put on cream to numb the area on her good arm elbow and also her dystonic arm. After a couple of hours (things are slow on Sundays) the nurse practitioner came and out the canula in. Immi was NOT impressed and the whole ward heard about it. We were all numbskulls!! Kudos to the NP who was patient and got a good line in eventually!
At change over I asked the nurse taking over if it could be flushed a bit more often as it was the third one and very stressful. I got told the standard flush time is 8-12 hours and they already did it at 8hour intervals. I held my ground and said that I understood that but that she needed it sooner as I didn't want her to have to go through it again. They agreed to do it at 6hrs.
We went to bed and had slept in and off. It was a busy shift with 2 going to surgery in the middle of the night, but I was disappointed and stressed when I became compus mentus enough to realise that the last flush had been 9.30pm and it was now 5.30am. I realised that the hand over nurse who I had discussed with, was a student who wasn't even the one doing the canulas. Finally a nurse came (at 6.25am...you are all witnesses!) and flushed the line and thankfully it was fine. I looked over at Immi and her dressing has ridden up. So much so that bolts are now exposed and I can see them drilled straight into her skull.

 All that, mixed with a stinking headache has left me feeling very vulnerable this morning.
Nothing has really changed. Everything is the same as yesterday actually slightly better in the fact that we have had a readable seizure. But it is amazing how tiredness and stress can change your perspective.
I have to admit to, this morning pulling my sheet up over my head (the cameras are on all the time!) and having a cry. A mix of fear and tiredness and being hit with the enormity of what is actually happening right now welled up inside me and threatened to overwhelm.
BUT GOD.
Many would say they found the strength inside them to stand strong. I don't think I can testify to that. But I do feel there is something/someone....God, who is walking beside and lifting me when I need it.
I met a mum and Ronald McDonald the night before last and she is overwhelmed. She is tired and scared and it is coming out as anger mainly directed at staff but it is in her whole demeanor. I understand. I can see easily how this happens. The overwhelming feelings either tear you apart or you have to project them onto somewhere or someone else. I am so thankful that I have someone to pass all my fear and frustration and overwhelming feelings onto and He is big enough to handle all the crap I pass onto him. I dont have to project onto the staff or onto Murray or anywhere else as I give him my rubbish. Its probably a good job none of you hear those prayers- they need some sensoring! But I reckon I'm in good company...there are plenty of psalms when King David lets rip at God about his rubbish and he was described as a "man after God's own heart". So I will give him my crap and have a cry, pick myself up and stand strong again because "He lifts me out of the slimy pit, out of the mud and mire. He sets my feet on a rock and gives me a firm place to stand." Psalm 40

Ain't nothin glamourous about this....lol!

Update: Dr came round and one of the wires has come undone and needs fixing. So a new bolt will be put on this morning and then redressed....they are talking about op to take out electrodes tomorrow....