Home, but not normal

We are home, but things aren’t normal. We don’t have a diagnosis, all they’ve managed to do is rule some things out. All they can suggest for now is we see how he goes and see if it continues to get better or not.

And yes, he has gotten better. He’s no longer hysterical and thrashing around screaming that Crocodiles are biting him and the mozzies are biting him. But he’s still super paranoid of them, and thinks they are everywhere. It fluctuates. This morning when he got up, he was paranoid but when Sara, Eli and Alan arrived, we were able to encourage him to get down on to the floor and play, and before he wouldn’t let his feet touch the ground. He then proceeded to spend most of the morning playing in the play room, walking around, playing in the toy house and the Thomas train. But towards lunch time he had started avoiding the floor again, and looking at people suspiciously like they have things crawling over their shirts. But then this afternoon driving home we had to pull over because he was freaking out, and then at home he wouldn’t let his feet touch the ground and was asking what was on everything. Now Sara’s trying to put him to bed, I already tried, and he won’t lie on the bed, he has to lie on top of one of us so he doesn’t touch the bed.

It’s like Nathan is there, but he isn’t. He’s still bright and smart, with a great memory and able to think. He was asking a Why question in the car today, and we said he had to stop asking that question, he thought for a moment and then rephrased what he was saying so it wasn’t a question anymore. (He did that the other night before all this too, he kept asking for a drink at bed time after he’d already had a decent drink, we told him to stop asking for a drink, so instead he asked for his cup with some water in it.) He asked to go to the toilet, so we stopped at the Church office as it was the closest convenient toilets, we walked in and he said something like, “oh, I know this place, we came here 4 months ago”. All that brain is in there like normal, and working. But at the same time, he’s not there, he’s been replaced by a baby, who keeps asking a question, getting an answer, asking a few more questions and coming back to the first question again. His speech is almost baby like at times. And at other times is exactly like he used to be. This isn’t my boy that we had 2 days ago, this is a very different kid, who’s difficult in a totally bizarre way. The remote possibility that we won’t get our boy back scares us.

Talking to a friend of ours who is a psychologist, it was encouraging to think about it like a Trauma that’s occurred, and this is now the recover phase. That he probably will forget about it and return to normal, but that this is how he’s recovering from that trauma, needing a safe environment to recover. That later in life he’ll probably only remember it like a dream, and that he won’t remember the scariness of it, or the intense fear.

We are exhausted, physically and emotionally. We are physically in pain from Nathan clawing his way on to us and the strength he has and is using without realising how he’s hurting the people around him. Just trying to get him to sleep last night on me resulted in many knee in groin injuries for me, just because he’s trying to get his whole body on top of mine so that none of his body is touching the bed. He pushes his head hard into your chest or shoulder, it’s not just gently resting, it’s pushed in terror. He has no thoughts to the person he’s using to get away from things, because he’s in so much fear, and as a result he forgets that Sara is pregnant and he forgets to be gentle with her belly. He’s normally pretty good at being gentle and considerate of it.

Please keep praying for a speedy recovery, and strength and wisdom for us to best care for him. Pray that our interrupted sleep still gives us the energy and patience we need to deal with him. Pray that Elisha has some understanding as he’s currently struggling with the amount of attention Nathan is demanding, even though we try to give Elisha lots of attention too. Pray for those around us supporting us, that they get the rest they need, and the wisdom of how to best support us, and much blessing poured out on them as they have blessed us. Pray that this goes away totally, and never recurs, that it was a random once off thing with no lasting effects.

Thanks for all the prayers and support so far, we’ve needed them.

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Nathan Update

The last 28 hours have been a bit of a crazy unexpected whirlwind for this White family.  Right now our boys are sitting on the floor of our private room in the Royal Children’s Hospital in Brisbane playing with blocks.  It’s amazing how this feels like such a massive achievement when two days ago, it would have been normal.  And quite amazing how only 24 hours can seem so long and be so exhausting.

Lead in Friday.  We drove into Brisbane to look at a potential rental house (In other news, we are probably moving to Brisbane).  Took the boys to a park, dropped a friend at the train station, took the boys to another park where we had lunch, headed to Alan’s for afternoon naps with the intention of going to the Symphony under the Stars.  Tim arrived after doing some work and decided that he was too tired and would prefer a pizza and a movie, so we grabbed some Domino’s and movies and headed back.  The kids fell asleep on mattresses on the floor while we watched the rather hilarious Parental Guidance.  With no scary bits in it whatsoever.  Then we transferred Nathan to the couch and fell asleep on the mattresses.

During the night, Nathan moved onto the couch with Alan where he fell asleep for a few hours.  He then moved into bed with Tim and I where he rolled and moved and wrestled.  A few times Tim woke him up and gave him a drink of water in order to get him to wake and then go back to sleep.

At 4.45 Nathan starts hysterically screaming.  He jumps up from bed and screams and pulls himself away from the crack in between the two mattresses, crying out about the crocodiles.  Initially, I think it’s a night terror, though he’s never had a nightmare in his life.  I try to make sure that he’s awake and that it’s not real and calm him down.  He continues to scream outrageously and Tim moves him onto the couch which calms him down for a few moments until he starts pointing to the couch and screaming to get the crocodiles away from him.

After about fifteen minutes, he hasn’t calmed down at all.  This is so completely out of character for Nathan.  We’ve tried distracting him, tried comforting him and nothing is working.  I start thinking after about five or ten minutes that we need to get him to emergency.  Get him some panadol and we leave.

We head to emergency, still screaming and seeing things the whole way.  They take him straight in when we get there.  He has a temp of 38.4 degrees, a fever but not a significantly high one.

His fear is very real, and on a level that I’ve never seen in him before.  Or in anyone else really.  Absolute terror.  He crawls up over your shoulders to try and escape.  Pushes away.  Thrashes.  Claws.  Blood curdling screams.

Throughout it, he can talk reasonably.  Count ducks.  Identify everyone.  He is compliant and not scared by the IV access that they take two attempts to put in.  Not scared by the ECG stickers or the range of doctors and nurses.  But then when he ‘sees’ something, he loses it.  After about two hours, he gets to a stage where he will have a significant time of not losing it.  He watches Dora on a portable DVD they have brought in to try and calm him, and only freaks out occasionally.  These intermittent hallucinations are still very extreme.  It continued throughout yesterday and last night.  This morning he has woken up, and although still paranoid, is looking much better.  He’s very shaky. His last big hallucination episode was between 2.30 and 3.30 this morning.  Tim and the nurse spent quite some time trying to calm him down.

They’ve thrown out lots of possibilities.  As soon as we came in they gave him precautionary antibiotics and antiviral medication, but his white cell count is only slightly elevated.  The proteins in his brain fluid are fine.  He’s had an MRI and lumbar puncture which didn’t show anything unusual.  So far they have pretty much eliminated a bacterial infection, virus, febrile delirium (Because the hallucinations have been so severe and so long lasting, well beyond the mild fever of 38.4 he had for two hours), snake or spider bites.  The only thing we have left to hear about is the drug screen, the possibility that he ingested something somewhere.

So we’re at a loss, but he’s still jittery and paranoid of the crocodiles, mozzies and spiders.  Tim stayed with him last night.  We’re both exhausted, just with the emotional intensity of his outbursts.  Having to always be prepared to have him thrash around and lose it.  He’s also really strong, and when he tries to escape from whatever it is he’s seeing, he really claws and pushes and is quite violent.

So that’s pretty much what’s happening at the moment.  He is sitting on the floor right now, which is amazing because prior to this, he would freak out if his feet even touched the floor.  And he’s been talking about the crocodiles being in Africa.  So I think we have a lot of improvement.

The doctors have said that we may never know what is going on or what happened.  He’s still not himself though, not by a long shot.  So just prayers that he would return completely to normal.  A happy healthy boy without jitteriness or shakes.  Without fear or suspicion.

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Father’s Day

Daddy has arrived home from Vietnam, and we’ve had a great few days hanging out with him and celebrating Father’s Day before he headed back to work this morning. Nathan was very excited to pick him up from the airport and has spent a great deal of time talking about the ‘kids at the school’ and asking to see where Vietnam is on the map.

Father’s Day here was a great one. We haven’t really celebrated it much in the past, but I’m becoming very intentional about having fun celebrations and honouring people. We talked about lots of different daddy’s that we knew and what made them awesome. We made daddy presents and wrapping paper. Nathan is very craft, he loves painting and making things so he was absolutely in his element doing that.

Then we had a father’s day ‘party’ with Daddy and Grampy and the family. Of course a party isn’t complete without balloons and a cake, so Nathan had fun decorating and getting things ready. It was very relaxing evening with family, and miraculously my kitchen managed to stay clean throughout the whole event, thanks to a lot of help! Elisha was so amusing in his attempts to blow out the candles.

Daddy and his boys on Father's Day

Daddy and his boys on Father’s Day

Since that day, we have a little book about birthdays that Eli has insisted we read him. He’s become an enthusiastic little reader these days, and the last time we read the birthday book he was very keenly trying to blow out the candle on the page. He’s started talking a lot too, and when reading a book about animals, he will say dog, cat, horse, duck, mouse, cow and a range of other sounds. He’s growing up very quickly. No longer a little baby, but a little boy.

As I’m enjoying this time of family, our little panda has started making itself known to me in the moments when I’m still enough to notice its movements.  It’s a feeling I never get over, those early gentle rolls and kicks.  

Nathan just wanted to tell everybody “Elisha!”  And that’s all!  🙂

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So we are starting to feel the effects of daddy being away.  It’s taken us some time to get to this point, because he isn’t home a whole lot during the weeks anyway, but the boys have been very clingy and mopey today.  So we spent the morning chilling out on the couch watching Mary Poppins, a childhood favourite of mine.  An easy dinner and early bed for them made the night a little more bearable.

My bedtimes have suddenly changed from 7.30-8.30 to sometime past 11 in the space of a week, just because bed suddenly doesn’t seem at all attractive without someone to share it with.  So here I am, rugged up on the couch waiting for a phone call from my husband.

He has managed to stay in insanely good contact while he’s been in remote Vietnam.  He has had internet access most of the time, which means he has sent back videos of the school and of the creek for Nathan to watch.  Tonight Nathan had two videos and a story instead of his normal three stories.

They are really growing up super quickly.  We saw granddad yesterday from Perth, which they were extremely excited about.  For those of you who haven’t seen them lately, here are some photos.


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The Blessing of Friends

These last few weeks have been a bit of an intense time for us as a family. There has been so much change and not a lot of time to really sit down and reassess what we’re doing, where we’re going and how this is all going to work. Tim started a new job about two months ago at the head office of Scripture Union QLD in the IT department. He absolutely loves it. The work, the team, the organisation. The only downside is that it is three and a half hours of travel each day. My brother Josh has just returned from a couple of months with his aunt and uncle to stay at our place while he studies grade eleven. My health has also been up in the air which came to a head at the start of this week. I had a couple of very high blood pressure readings which prompted a visit to a doctor at the hospital who prescribed me some medications to bring it down. I really hate drugs of any kind, and this really upset me. A lot. I’m still not entirely sure why it affected me as strongly as it did, but I was crushed by this information. I decided to hold off on taking the medication for a few days and try and bring it down myself which I’ve actually had success in so far. Prayers would still be appreciated.

Anyway, all that was basically background information to get to what I really wanted to talk about. How ridiculously and abundantly loved we are, and the amazing friends that are in our life. We’ve just been so blessed over this past week.

Wednesday: My horrific day at the hospital was spent dealing with (in my opinion) incompetent staff. I may be giving them a hard rap, my mood really wasn’t the best. I was actually quite grumpy, non compliant and challenging (There was a lot of eye rolling going on). Despite all this, my friends and midwives Jodie and Sonya were extremely supportive. They sat in waiting rooms with us for hour after hour and were totally on the ball regarding what needed to be done. They always go above and beyond.

Thursday: This was the day I had to face everything and decide what action I was going to take. Apparently burying my head and denying it wasn’t a reasonable option. So I had to make some decisions, particularly regarding lowering stress levels. I was a blubbering mess that morning, though I settled a bit by lunch time. Our friend Alan took work off early and drove the hour and a half out to us to bring chocolate and a listening ear. It really demonstrated to me that people care.

Friday: My sister came out for the day to help me out with the boys while I tried to figure out what I was doing with uni. There’s no way I would have been able to do what I needed to without her. It was a big deal for her to drive that far and take a day out of her life in a crazy period for her just to help me out. Nathan was so excited to have Aunty Lucy with him for the day.

Saturday: After a lovely party celebrating a beautiful friend’s 50th birthday we returned home to catch a nap before the next blessing of the week. God just kept showing us how much people care. Janet and her two daughters from our church came out just to clean our house for a few hours. They brought dinner with them, worked hard and got my house to a state where it’s no longer stressing me. For someone who really needs to feel organised, this was HUGE for me.

There was extra light for me this week with the arrival of two eagerly awaited new little lives. Our friends Stu and Jo had their little boy Azariah Rain on Monday 12 August 2013 after what I’ve herad was a 20 hour labour. She is a first time mum who had her little boy at home at 42+2 days! I am so impressed and proud of her! They are going to be absolutely amazing parents and I’m so keen to give little Aza a cuddle.

I was so blessed to be a part of baby Ruben’s welcoming. After such a tumultuous pregnancy, this birth was just miracle after miracle and a real time of healing. Krystelle worked beautifully to birth her baby boy (a big surprise for me, I was definitely expecting a girl) at 2323 on 13/8/13. Krystelle and Andrew are two of our closest friends and they handled the whole journey magnificently. This is the first brother to big sister Scarlet who is so proud. We cannot wait to watch these two precious boys grow into strong and gentle men of God.

So this week has been full of highs and lows. It’s been so huge and mentally exhausting, but somehow I’ve ended it feeling blessed and secure in the love of God and of my friends and family. There is still a lot to come in the next few weeks. Tim leaves for two weeks in Vietnam tonight which he is both excited and nervous about. I think it’s going to be a great period of growth for him and I’m really looking forward to hearing his story when he gets back. Prayers for this time for our little family would be very welcome.

Thanks for being with us and journeying beside us and showing that you care. We truly are blown away.

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