A special sibling starting school

I spend a great deal of time blogging etc about her brother so this post is all about Thea.

So Thea starts school in 10 sleeps ( how she is counting down). We have uniform and shoes, book bag and kit bag. The excitement is building. But im left feeling that at some point i blinked and she went from...

 to

blink again and

Blink again and time flashed by.

Then she wanted a sibling. What she got was not what any of us expected, and her life changed dramaticly. Thea grew physically and emotionally. She had to share her parents not just with a brother, but with drs and nurses, OTs and physios, health visitors and surgeons. Her sensitive, caring nature has been put through the emotional wringer. Thea has matured quicker than she should have through necessity. She is amazing, tolerant, helpful and a fantasic sister. Her love for her brother and her understanding of his problems astounds me at times. Even though she misses out on trips out if hes poorly or we have appointments, she rarely complains.

Thea strops and storms about, slams doors, can be cheeky, wears me out at times, but can always make me laugh and smile. She keeps us going through tough periods.

Thea knows her own mind, and if she doesnt agree with you you are in for an interesting time! And now, school is just round the corner. My baby is all grown up ( well not really she is still 4 after all). I get the impression i will blink again and she will be at senior school.......

 

My special Saturday post- funny things said or done

Well, firstly, my special child makes me laugh so so often. Even when he's poorly, or we are hearing bad news.

One evening I could hear Nate getting extremely frustrated while playing on the floor. I looked down to discover one empty sock stuck to the velcro of the suction machine bag, and one sock complete with small foot also stuck to this velcro. Nate had managed to free one trapped feetie from the velcro/sock prison ( no small task with hypotonia) and was trying to free the other.

Another amusing moment was a thoroughly unimpressed natie pie who was wearing socks as gloves, bangles as earrings around his little ears, and a my little pony on his head. I swear I left the room for seconds.

Nate finds his sister hilarious and spends half his waking moments laughing at her. And believe me if you heard his special low tone chuckle and saw his cracking grin you would be laughing too :)

No appointments next week, seriously?

It is with absolute shock that I realise my calendar is clear next week. Surely not?

However when I think of how busy this week has been it seems only fair.
We started the week with a boiler service, oxygen collection ( of the extra cylinders we thought we'd need on holiday) and food shopping delivery.

Tuesday involved an inpromtue visit to the QE hospital as they couldn't change his reflux meds without seeing him, followed by an opthalmic appointment at the RVI. They could see no improvement from last time :( but said structurally everything is fine, the neural pathways are firing, but his brain isn't interpreting the images yet. It is too early to say if, when , and how much he will be able to see. Back in 6 months.

Wednesday I had some time for me. I met the lovely Jude and Kate for coffee, and their beautiful babies. For anyone reading who has a child who seizes I encourage you to look up their new charity small steps and " seize the day" to support families of babies and children who have seizures.
The evening involved some rose vino, a meal, and watching bridemaids with friends. That film is sooo funny!

Thursday was physio for Nate, gymnastics for thea, and should have been Nate getting his injections but he couldn't have them due to being on antibiotics.

Friday began with an ultrasound to hunt out nates testes. One has descended the other is hiding up a height and is still undescended. So this means another op. I wonder if they could do the 2 together? Hmm that sounds like it would take too much coordination for surgeons. Afterwards we went to our children's centre where a Nate tried out the ormesa bug pushchair, and several car seats. This was really productive. We will see the bug rep in September to sort padding and bits and pieces he needs for the chair. The brio zento was the best carseat for Nate. For both items the ot must apply for charitable funding so we are in for a long wait. But at least it's progress. The car seat looks great. And the bug doesn't look too SN, mind it will once Nate has the support he needs. It was hard hearing the ot and physio talk to the car seat rep who was asking things like when would his strength improve....?

So a lot crammed in

Best laid plans- a very bad week

So as you know we should be on holiday. Guess where we are though?? Yes that's right- the RVI in Newcastle.
We left home Monday morning. Thea was bouncing around after waking sooo early with excitement ( she also went to bed at tea time the previous day). We got to center parcs no problem. Parked up, went for lunch, had a wander, then arrived at our lovely lodge. We started to unpack and realised thea had a mini crossbow session so everyone left and I stayed to feed Nate.
He sounded snotty when I fed him and became very refluxy after the feed. He started to drop his sats so I called Michael back. Any time we need to turn up nates oxygen we need to get him checked out so we called security who rang the local hospital to inform them we were coming up. The hospital wanted to send an ambulance and we agreed. So we were blue lighted to the largest nearest hospital 30 mins away.
Initially the dr said nates chest was fine and that he had an ear infection. We explained his history and that he can become very unwell very quickly. We suggested he contact nates main dr to discuss the methods that Nate responds best too. At this point the dr became very stroppy and basically took a huff saying he didn't need anyones advice about how to treat Nate. Very suddenly nates temp shot up to 40 and he became distressed. I explained this had only happened once before and Nate had required iv fluids and antibiotics. We were told he didn't need them.
The dr told us to get him on his nippy ventilator and we were left alone to do it. His sats dropped to 79 and we put him back on his nasal canula. His sats started to rise but the dr rushed it and started to bag him, calling the crash team and anaesthetist from the adult icu. Nate ended up having loads of facial oxygen.
Bearing in mind he had just bagged my son this dr started waving nates notes at michael saying see he didn't need anyones help for Nate, and he didn't need to speak to our dr, it wouldnt have changed anything. At this point I completely lost the plot and started shouting at the dr about how rude he was being. I was shaking with anger and this is the closest I have ever ever come to hurting anyone but my god I was close.
The anaesthetist and assistant were fantastic and calmed me down just by talking plainly about what needed to be done to get Nate safely to Newcastle where they could care for him properly. They said it was likely he would need to the intubated and ventilated for the journey BUT they spoke to the picu in Newcastle for advice, who spoke to our dr. We had been told that if Nate ever needed intubation there was a chance with his poor tone that he might never come off ventilation. Hence our worry and concern. It was agreed he needed it so Nate was sedated, intubated, ventilated, had an arterial line, several canulas, ready for the rvi team to collect him.
We couldnt go with him in the ambulance and followed by car. Driving across the a69 in dense fog, desperately trying to stay awake.
Once at the picu he was stable and comfortable. He was extubated without problems and today has made it down to ward 2 - the one we are normally on. He is happy and lively. And we are so so So so relieved.
It has been an absolute nightmare. I may never leave the north east again.
Luckily the in laws were with us and so thea is still having a fantastic time away with them!!!
I have written this quite matter of fact but you can imagine how scarey everything was. How awful it was to see him intubated and sedated, and worry about his recovery, and extubation. We were unbelievably terrified. And horrified at the arrogance and pride of one dr.