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....

A Big Week - Day 7

Guest post today from Murray but before that...today's headline....no seizures. Bormally this would be something to celebrate but this week this is really really not good. We need more seizures!

So...as I take a break, here are Murray's musings!...

It's taken me some time to gather my feelings and reflect on the BIG WEEK that's been happening to us and especially Immi. That wall of emotions we faced heading up to  Wednesday and the 5 hour long brain  operation I am now realising led to a huge shut down  both physically and mentally, is that  a 'MAN' response??, huge amounts of stress where I felt I had to stay steady and even to help Karen and Immi face it without us all losing it... I realise I have held back, but I'm  not  sure I had any  other  way of dealing  with  it... No other emotional tools to take me through to the other side of that operation... What relief when she was out of theatre and in our arms, while still unconscious and nonverbal there remained the anxious pain, the 'what if's' the uncertainty and loss just hanging on the air... holding your breath for 6 hours is a long time and hugely debilitating... numbness, disorientation, loss of purpose and pleasure... That beautiful moment when Immi opened her eyes, that stifled tear when she finally spoke again (after an hour) what a day that was, what a rollercoaster of emotion and non emotion, heartache and relief. We put so much trust into the hands of others in our medical system, and they have proved themselves to be trustworthy, yet again...

I have been balancing the turmoil of the unknown alongside reading "Red Moon Rising", Pete Greig's fascinating book  that sets out how God started the 24/7 prayer movement in the UK. Its dangerous and challenging beginnings and  viral spreading across the  world. It's a MUST READ for anyone interested in living faithfully for Jesus and  meeting the increasing challenges of our time through prayer... This book has been a real Godsend  for me and has  helped me to see God at work and present in the midst of everything we have walked  through. In my times of deepest turmoil I have felt comforted and supported, almost as if Pete Greig were walking the same journey, an example of this was a bit of the bible he quotes as he tries to reconcile the positive and negative, the joy and the pain in his own experience. https://g.co/kgs/hDQvA5 

From 2 Corinthians 6, this is what it says "Well, now is the right time to listen, the day to be helped. Don't put it off; don't frustrate God's work by showing up late, throwing a question mark over everything we're doing. Our work as God’s servants gets validated—or not—in the details. People are watching us as we stay at our post, alertly, unswervingly… in hard times, tough times, bad times; when we’re beaten up, jailed, and mobbed; working hard, working late, working without eating; with pure heart, clear head, steady hand; in gentleness, holiness, and honest love; when we’re telling the truth, and when God’s showing his power; when we’re doing our best setting things right; when we’re praised, and when we’re blamed; slandered, and honored; true to our word, though distrusted; ignored by the world, but recognized by God; terrifically alive, though rumored to be dead; beaten within an inch of our lives, but refusing to die; immersed in tears, yet always filled with deep joy; living on handouts, yet enriching many; having nothing, having it all." This really sums it up for me, the  everything and  nothing, the tears and the joy, the highs and the lows... really resonated deeply with me! (this is the Message paraphrase of the Bible,  but other great translations are available!!) I think though, in reading this that we may need to rethink what we  classify  as  highs and lows.. It's hopefully a  powerful  reminder that God  promises  to  never leave us at  ANY TIME!!

Having the opportunity to STOP and STAY with no way of doing anything else is also challenging.. I have spent this week in  the hospital  with Immi, where she is connected to the wall through a wiring loom of multicoloured cables attached to 16 electrodes buried deep  into her  brain... there is no disconnecting it, no walking  around, no fresh air... While on duty one has to be engaged and alert, vigilant and ready to act. When the seizure comes, there  are people to call, buttons to press, clothes and bedding to change, loved ones  to comfort...

On the eve of my first night shift I was reminded of Jesus in  the garden of Gethsemane. The disciples sleeping nearby, the challenges and the alertness and known outcome that weighed heavily  on Jesus' mind. As I sat there, lay there, held there by  the negative desire for a powerful seizure to rack my loved ones body, it felt not dissimilar to Jesus preparing  himself for a negative physical outcome himself. Knowing that the pain and torture he would face was a necessity if the world had ANY chance of being restored, freed from the pain  and torment of sin and death. This spoke to my parallel situation where Immi's pain and torment was an essential part of the medical pathway to potential freedom of epileptic seizures.

I lay there watching her rest and eventually sleep, mindful of the possibilities that could be won by this  painful  process but completely  and  utterly thankful to God for being with us all  throughout this process, for hundreds of praying friends across the world supporting us,the invisible army of God's people reaching out with love and hope in their words, thoughts and comments...

Huge thanks to everyone who has been part of this journey, we really appreciate every one of you, and no matter what kind of reception you might receive from Immi (the good  the  bad  and the ugly sides of Autism!!) you are loved and you are valued by us!! God bless you. Murray xx        

A Big Week - day 6

Main headline: Immi had a short seizure at 1.10am and then a 2 min one at 10am. Electrical activity is picking up in her brain as the anaesthetic is wearing off (as shoen on the monitoring). So more seizures will probably appear.

Apart from that, life is slow in hospital on a Saturday. The highlights of my day have been doing a load of washing, buying a "Pinkie Pie" helium balloon and (more importantly)...visitors. 

Visitors are sooo important. Please never underestimate the value of visiting someone in hospital even if it is just for 5 minutes, even if you feel it wasnt really worth it, even if the patient gives you the cold shoulder (sorry for those who received a frosty reception from Immi this week!) Even if the people staying in hospital can barely string two words together because their sleep deprived minds have gone to mush!  I can tell you it is worth it. For the patient it is worth it. For their family it is worth it. It speaks so much. You don't even have to say anything. Presence speaks volumes it says "I value you. I think you are worth my time. I think you are worth my car park charge!" 

This week we have had a number of visitors. Some from nearby, some even also staying in hospital in other wards, some battling train cancellations to get here, some are family, some are friends who I haven't seen for ages, some are even friends I have never actually met in the flesh before but "met" through a face book group. Each person has sacrificed time for us, each person has communicated love and shown with their actions that they care. Each person has made themself available. And for each person...I am thankful. Xxx

Tomorrow Murray is going to be guest blogger and I'm going to keep quiet for a day! ;-) 

A Big Week - Day five

Its all about attitiude. I can either sit here and feel sorry for myself, for Immi, for how life is, or I can allow myself to be positioned in a place where I am available to others and despite being in a ward most of the time, to be there for the one.
Last night was one of those times. I went off to Ronald McDonald house, watched last Sunday's Poldark(!), listened to some music and then settled down for an early night in a peaceful bedroom. I fell asleep quickly and had been asleep for about 4 hours when a tremendous hammering on the door broke through. In my half asleep/half awake state I wondered if I had missed an alarm and needed to get out but it was a lady knocking the door down shouting help very loudly. I stumbled to the door and she desparately cried "please help, he's having a seizure!" It turned out that not only did she have a son in ICU but her partner (a big chap) had epilepsy and was seizing badly and making noise that he normally didn't.  I went next door with her (even having the presence of mind to remember my card key...quite impressed myself at 1.30am!!) and just kept him safe, asked the normal epilepsy questions about length of seizure, care plan, had he taken meds etc. Due to being with their son the dad had missed some meds so it wasnt a surprise he was fitting, so we stayed calm, waited, refused the offer from another lady to call an ambulance (last thing the poor young mum needed was one in the children's and one in the general hospital miles away from each other!) and within the 5 minute window he started to come round.

we can be available for others whatever our circumstances

I sat with the young mum and told her a little of why I was here. Her response was "I knew I knocked on the right door!" It humbles me that we are placed to have purpose beyond our own understanding and we can be available whatever our circumstances. Let's be available.
The irony though is not lost on me...Immi still has had no more seizures. Normally this is our greatest wish. This week however, we need some seizure activity....starting to drop some meds out to try and cause this to happen...watch this space. Xxx

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.