A Big Week - day four

Oh my word....so beyond tired. You know that way when you are so tired you feel sick...thats me right now. Big shout out to the friends around the world that kept me going last night!

Immi did well last night. She drank enough and kept falling in and put of sleep, not helped by hourly obs of course! Her blood pressure and temp were a bit low so it stayed hourly all night. She only had one, short seizure during the night but I had completely forgotten how loud wards are. I am sure it wasn't this bad last time. The chap in the camp bed in the next bay with his daughter was making all sorts of noise - wont go into details, you can imagine! It wasnt pleasant!
She has eaten breakfast this morning (not even 7.30 yet!) And we are waiting for Murray to turn up - then Immi has to have a CT scan again this morning! Im so proud of how Immi is coping with everything, she has been so brave.

A few hours on and the CT scan went well - although as the scanner was in demand we had to bribe swift cooperation with the promise of a McDonalds!

 The scan checked that all electrodes are placed well and are working as expected, which they are.  Ironically Immi has still only had one seizure so far, ironic as she had 4 the day before the op, but the drs say that the anaesthetic prevents seizures so it will probably pick up again. If we dont get some tonight then they will drop out one of her 3 meds tomorrow to try and induce some.
She is doing well, talking, eating, drinking and just a bit uncomfortable which isn't surprising. All in all doing as well as can be expected. Just need a few more seizures to measure now (the only time we will ever be wishing for more seizures!!)

A Big Week - day 3

Woke after a short sleep at 6.10. Immi was sleeping but moving around, so I know she wasn't sleeping well. I woke her at 6.50am to take her meds as she is not allowed liquids after 7am.

We needed to be back on the ward by 8am so showers and dressing next and then off to the ward. On the way we briefly saw a Mum that we met last time we were in and have kept in touch with. As she flew by she gave me a hug and asked if we were ok. I was till then!!! To be honest though it was lovely to see her, they too have been through such a lot as a family that I knew it was a hug of empathy and later she messaged to say that she is never normally out of the hospital at that time and she felt that our meeting was no coincidence.

By this time Immi was a little punch drunk and giggly, so she kept us all entertained on the ward.  I think my favourite moment was when Murray pointed out a giant helium unicorn balloon.  Immi simply said "that's Mavis." Cracked us all up!

The air conditioning in theatre had stopped working and had to be rebooted so there was a delay on the surgery but the hour's delay went very quickly with changing into her gown and putting on DVT stockings (apparently you use the plastic bag they come in by slipping it over the foot so they slip on easier - quick tip!) meeting the anaesthetist, then Mr Walsh again (neurosurgeon) and finally the neuro team that put 5 extra electrodes onto the outside of her head for monitoring.

Finally it was time to head down. We started in the CT scanning room where they put her to sleep with gas and air (she was given the choice of gas and air or injection). She was so good; smiled, told us she loved us and close her eyes.

And now we are waiting and writing. Five hours of wanting to distract yourself but also wanting to stay with her in the moment. A surreal feeling of walking around with some weird hidden secret where all the strangers around know nothing. Feeling slightly nauseous and unable to settle on anything. Looking at stuff but my brain far away not taking it in. Thankful that in a sea of unknown people we are known.

So at 3.45pm after 5 hours we were called to recovery. I have to admit seeing her was a shock. It shouldnt have been. But it was. They said that the op had gone well and there had just been a bit of weeping. She has briefly woken but was asleep again and so we wheeled her back to the ward where they have done regular obs.

After about 45mins the neurophysiology team were back to connect her and her "troll-like" get up (as in the film Trolls) came into its own. They spend over an hour connecting her and have just gone to do the final set up in the collating room. Test readings look like they are reafing clearly and taking good recordings which is what we need. Immi has pretty much slept and grumpily watched the odd bit of TV since returning to ward. She pulled off the heart rate monitor from her finger and isnt happy about the canula in her hand. She hasnt drunk anything yet and hasn't yet spoken - which is our main concern othwr than the epilepsy of course.  But its early days.

A Big Week - night 2

Well if yesterday was a long day, last night was the longest night.
We have been given a room in Ronald McDonald house (I'll write about that later in the week) and Immi was allowed to stay with us as long as she was back on the ward this morning for 8am.
Well, sleep evaded us. Especially Immi. And keeping the fear and the "what ifs" at bay was hard. We find ourselves watching Zootopia at 2.30am in a bundle. Immi struggles to get to sleep at the best of times and often needs a weighted blanket, this night was even more of a struggle. She wanted to be held really tight, which would have been fine if she hasn't been breathing right in my face! I'm not a night hugger! I need my space, but tonight I didn't care. I was in a really uncomfortable position, but I was holding my baby. Tomorrow held horrible hours in its hands and I would hold her all night if needed.
 In the dark the tears rolled and for the first time in my life I guess I felt a bit of the impending doom that Jesus felt in Gethsemene. Knowing what was to come and asking if there was any way of avoiding it. No wonder he couldn't sleep! It was a scary place. But with it came a recognition....after three days there was new life. It was horrible, the worst thing imaginable but the best came out of it. Renewal. Restoration. New beginnings. There is a verse in psalm 30 that says "tears flow in the night, but joy comes in the morning."  This is my prayer over the next week or so. That thought this crap that Immi is going to go through that joy would break through, that a new freedom and new life would come.

A Big Week - day 2

It has felt like a loooonnnnggg day!

We got up, packed up and came into Birmingham. We had a couple of hours to kill and Immi still had some Christmas (yes, Christmas!) vouchers to spend so we had a trip to The Bull Ring and to Claire's accessories. Immi gets overwhelmed in big shopping centres at the best of times, I think it is something to do with the noise and lights and today was no exception.  It took us 45 mins to get past the first shop, firstly because as she entered it (The Entertainer) she went into a seizure and we had to go and change. When we finally got back in there she spent another half an hour wandering aimlessly around the entertainer, not really looking at anything, but not willing to move on either.
Eventually we were able to move on and in Claire's she bought some headbands as she will want something to cover her head.

Then we moved onto the hospital.  When we arrived at the ward at 2pm as requested we were asked to sit near the ward door as they were discharging some other patients.  Immi was called for a blood test to show she has no infection before op. We went down to outpatients for this, only to find the things had already been sent to the ward, so we went back up! Immi eventually allowed her blood to be drawn although she wasn't keen until I explained we weren't doing the op today.  I think she thought it was the start of the procedure. All done we continued to wait. Then Immi was called for another blood test - to determine blood type this time. Not sure why they had to do two different tests - GMC policy apparently. (Any medics out there feel free to enlighten me as to why patients have to go through two separate procedures! Seems unnecessary!) Then the wait again!

Then the big cheese walked in.  The man whose hands will be responsible for our daughter's fate in a way none other will ever do - I do hope he carries that responsibility heavily!  It was a bit of a stunning meeting.  They have decided to place 16 electrodes into Immis brain.  13 on the left into the central and frontal lobes and 3 in the right frontal lobe. She will spend about 5 hours under general anaesthetic. Firstly they will do another MRI, then place the frame, then a CT scan and match the two up.  Then they place the electrodes and then another scan to check placement, and finally she will be woken.  They will then monitor her seizures at full meds and drop them out as and when they need to.  If they find a specific place they feel they are eminating from then they can heat up the electrode and temporarily kill of some cells around that area and see if it slows seizure activity.  This will give them an idea of what they can do as a permanent fix.
Finally after 7 days they will do another short op to remove the electrodes, then she will stay for another day or do before returning home.  He said he will keep us an extra day as we live so far away.
Then of course we had to sign off. We were told that there is a risk of clots, small or big, a small risk of meningitis as they are going into the brain and a small risk of life......blooming heck. I really hope this is worth it. Immi is about to go through a seriously horrible week that has the potential to bring about an amazingly good change but also has a small chance of bringing about no change or making things worse.  If you are a praying person please pray this brings about an amazingly good change!

A Big Week - Day 1

A big week Day 1

We arrived in Birmingham late last night. Second seizure of the day was a Taunton Deane services....pleased to report that their disabled loos were clean, and they have showers!  We got 10 minutes away from Birmingham in reasonable time and then the motor way was closed both ways due to a car fire and so we got stuck for over an hour! But hey ho, we got here eventually! We stayed last night and tonight in a lovely little Airbnb place, a little annex to the house (with wifi and Sky TV so Immi is happy!). It is lovely and the host is the head of patient experience at Birmingham Children's hospital where we will be, so she has asked if we can give her feedback! Mystery hospital stays...a whole new concept!! Lol!

This morning we went to a local French coffee shop - it really did feel like France inside complete with the music (which Immi loved) and fruit tarts. It was a lovely start.

And then off to Cadbury world.  As we arrived all the characters were outside with a couple of smart looking people, having a photo shoot. The parrot looked pretty perturbed when Immi bounce up and asked for a photo! They definitely weren't there for the kids! We found out later that one of them (the smart ones, not the dressed up ones!) is the present president of Cadbury, so it must have been a photo shoot for something important!

We had a fun time going around Cadbury world and Immi did well, until about lunchtime when she had a seizure and fall and had to be changed.  After that she was complaining of a pain in her hip so things got a lot slower, she nearly fell asleep when we sat on a bench and as we had done the tour and 3D experience we thought we should call it a day there. 
Yesterday I had made the realisation that all of her nightwear is the sort that goes over the head and so I had scoured the Internet for button up pjs.  Immis is of that age where she is too big for many shops kidswear but not big enough for ladies wear (and her tastes in clothes aren't in that place at all!)    I managed to find a couple of button up short pyjamas in M&S and had ordered them so we swung by to pick them up and then came back to our Airbnb pad. 

It has been a lovely day....not trying to ignore the events of the next few days at all!!!

Well, that didn't go according to plan! ***Warning...this post contains spiritual content (and a bit of science)!***

It's windy today here in Cornwall - very windy.  Murray went off to St Austell to preach and I sat listening to the wind, debating whether I should wake take Imogen to church this morning despite a late night seizure.  Why go to church at all? 
I had already watched some great teaching from LIFE church  http://www.lifechurchhome.com/ on my ipad as I drank my coffee in bed, so why bother? I decided to 'bother' as it is in relationship we grow.  
Anyone who knows a bit of brain science (sorry - science is my other great passion!) knows that our limbic system is the part that deals with our emotions and we can only experience joy when we get those oxytocins going, and that happens when we are in relationship with others.  So, spiritual aspects aside,  meeting with a group of people who share the same worldview is great for mental health! 
Apart from that, when God's people worship something amazing happens; perspective on life changes and God breaks in.  There is a part in the Bible that talks about us being raised up on wings like eagles.  It is talking about strengthening, but I believe it is also talking about perspective...being able to see the big picture.  Something changes in our thinking when this happens. 

Anyway, I start getting Immi out of bed (always a challenge in itself), she had a seizure late last night, so I decide she needs to shower this morning.  All goes well despite being at her stop/start pace.  We get in the car (a little late by now) and start to drive to church 5 minutes away.  Half way there she goes into a dramatic seizure, so I put my hazards on, pull over and hold her.  She is wet now, so we drive home - feeling a little dispondent as I had made the effort to battle with the shower speed, get meds in her, get her splint on etc etc.  We get back and thankful the same parking space was still available.  She was still fitting a little so I ran to unlock the door and went back to the car to support her to the door.  As I open the door and lean over to undo her seat belt and almighty gust came along and knocked the car door straight into my fore head....OUCH!  It was that kind of pain that draws tears despite yourself.  I held my head for a moment with Immi saying "Mummy, are..." FIT "you..." FIT "ok?" FIT.  What a pair.  I gathered myself and got her to the house and the bathroom, where the tears flowed for both of us.

And if I wasn't a believer, that is where this post would stop.  But I am thankful that I have a place to go with the crap, so in that moment Immi and I did church.  I messaged a couple of friends to ask them to pray and then we did life with God in the way King David did life with God.  It wasn't pretty, it wasn't quiet.  We ranted and raved.  We told him how  it really is and how we don't want it.  King David was described as a 'man after God's own heart'.  He did things wrong, and wrong was done to him.  His life was full of ups and downs, But he was real with God.  If you read the Psalms, they are full of David being real with God. And believe me - we both got real!  When you are standing, letting it all out to God with your 13 year old telling him how she feels in no uncertain terms - that's real.

So often we have an image of Christianity of being prim and proper and looking neat.  NO, NO, NO!  That is not life with God. That is not relationship with a heavenly father.  That is NOT being a Christian - that is going to church.  There is a huge difference.  

He doesn't want us all sorted and perfect....we never get there anyway!  He just wants our hearts; the pained parts and the joyful parts, he wants to comfort and to celebrate.  And above all - which I needed today - He gives a hope and a security that it won't always be this way.

So... my head still hurts. I didn't make it to church to be with others. But I could be sitting in a mess of tears and hopelessness right now.  Instead, I choose Jesus, I choose hope, I choose joy.

Pulling back the curtain...

Today was not typical, but not totally abnormal for us either. We went to see a potential SN school for Immi this morning. When we reached the class she would be part of she stuck a painting shirt on and got stuck in there. It was beautiful to see. 
Following the visit Immi and I headed half an hour North to the hospital for an EEG. Her last experience of an EEG was the video telemetry at Birmingham which she doesnt remember with particularly fond memories. However I prepared her well, or so I thought! I wasnt quite ready for her reaction. 
When we reached the room she sat down in the chair but suddenly a penny must have dropped because she leapt out of the chair with het hands o er her head screaming "never! You are never doing that again" and dropped to the floor crying. What followed was a mixture of tears and good cop/bad cop parenting from me while the technician and doctor looked on. The tears flowed, with us sat on the floor and Immi lamenting that no one understood what it was like to be her, and that there was no way anyone would ever be able to fix her "nightmares" (what she calls her seizures). No negotiation would convince her otherwise, so I switched to bad cop mode and told her that if she wasn't back in the chair by the time I counted to 3 then there would be no pancakes this evening, no ipad all week and no pizza and film night ritual on Saturday (woe betide anyone who messes with Sat night video and pizza!). I was apparently "evil" and "the worst parent in the world" at this point. To which I told her "I know darling." All the while actually feeling such a mix of emotions; humiliated that I had to deal with it so publically, frustrated with Immi, compassion - I wouldnt want to go through the crap she has to go through either, deep sadness at the despair she feels about her lack of healing and feeling that too and cracks under the determined "tough love" exterior that I was showing. 
At "2" she said "if you put the fingers down Ill get up". We follow a scheme called 1,2,3 magic from the States where I count on my fingers without saying anything so she knows consitently how long she has and what will happen next. 
I stopped, she got up, I breathed a sigh of relief, she put her hood up! It was her last ditch attempt at defiance, but she gave up quickly when I started to count again. She did however scowl the whole hour...quite a feat!
The rest of the session was readonably uneventful apart from them being able to see constant jolts on the screen that were either undetectable or just very slight when watching Immi.
When we got home Immi went straight up for a shower. I obviously have to stay close at this time. And today I was very glad I did. No sooner had we put the shampoo on than there was an almightly crash and immi lay in the bottom of the shower tray, seizing. I am very thankful the glass didnt break and that it wasnt a hugely long seizure.  To be honest I wasnt sure what to do and in the end decided it was the best place to stay. I turned the water off and covered her with a towel and eventually she came round and we finished the shower. As she finished up she said "You dont deserve a girl like me" I replied "I know, I.am so lucky!" "No, I didnt mean it like that."  she said. "I know". I reply.
She is clean and cozy and looking forward to pancakes now.
Are there lessons to learn from today? Well one is that consistency pays off. If we hadnt been consistent over the years, following through with doing whag we say then there is no way we would have got that EEG done this afternoon. 
A friend wrote and said that is sounded like I need a good nigts sleep. Yes, that is probably true, but days like this are pretty commonplace for us now, so no more than normal. I dont normally post a lot of what goes on on social media etc. But sometimes I think it is good to part the curtains and let people see a glimpse of "normal" life.  
So if you know someone who is parenting a child with a special need of any kind, please remember; the snap shot you see is the day in, day out, suck it up buttercup, batton down the hatches, set sail and don't give up life, they have to lead every day. Somedays are tough but good, somedays are tough and bad but every special needs parent knows that their child is worth it.