To Edinburgh and back

It has been a busy week for us here in the Mckenzie house.

On Tuesday I made the 8 hour round trip to Edinburgh with Jack to see the Neurologist. My Dad came with me and thankfully he did most of the driving. Before we left, Jack had a session of Craniosacral Therapy at 9am with Joanna. He was very sleepy and so she was being quite gentle with him but I think he was kidding us on cos at one point, he had a wee smile to himself but we clocked it! Wee monkey.

Joanna and I were having a bit of a laugh as she was the one who had suggested I get a subscriber button but being the technophobe that she is, she still hadn't worked out how to do it! She was mortified that she still hadn't clicked on that button 6 months later, so she did it straight away after reading about herself in my Blogaversary post. She thinks she has managed it now. Tee hee hee, only time will tell.

Jack slept for the first two hours of our journey to Edinburgh. I sat in the back with him as he has been having quite a lot of seizures recently and I needed to activate his VNS with his magnet. I was also giving him water boluses through his peg enroute and setting up his feed pump for his lunch. Not easy to do in a moving car let me tell you!

We arrived in Edinburgh at 2.10pm and were waiting in the corridor when Jack took another seizure. The epilepsy nurse called us in at that point and we'd to navigate the corridor with Jack's arms flung wide, which is  really difficult when you are trying to get past other people and other children in wheelchairs and buggies. I could feel my stress levels rising. Hopefully in the new purpose built hospital the corridors will be much wider.

Sick kids hospital in Edinburgh  (source)

We had a lot to discuss but very quickly it was decided that we should up the dose of one of Jack's epilepsy medications. I was gutted because we had managed to reduce the meds by 6 mls a day but as she explained, Jack has grown quite significantly since she had last seen him and his weight had increased to so he was no longer on a strong enough dose for his height and weight. She also programmed his VNS to go off every 3 minutes for 30 seconds instead of every 5 which should help control the seizures too.

After our discussion in November, it was decided on this visit that they would take more blood from myself and Jack to have another look at his chromosomes to see if there was anything else going on. I saw this as quite a positive thing because the more you know, the better it is for managing treatment of your condition. Jack was a real trouper getting his blood taken whereas his mum absolutely hates hates hates needles and was starting to hyperventilate at the thought! You'd think having had chemo years ago it would have made me immune but no such luck. I am a total wimp! They gave me a form for Father of the Year to take to his doctor so that he can get his blood sent off too. He is supposedly due home next week so I asked his Dad to let him know that he needs to contact me.

pic from here

The other thing we talked about was Jack's epilepsy protocol.  At the moment, since Jack was taking so many seizures lasting over 10 minutes, it was decided by a different epilepsy nurse that no rescue meds should be given until the seizure lasted 10 minutes and then to give more rescue meds 10 minutes later and call an ambulance. This meant that we weren't calling the ambulance so often but then conversely it meant letting Jack seize for 20+ minutes which wasn't an ideal scenario either. Damn scary actually.

So we drew up another protocol whereby rescue meds are to be given after 5 minutes and if he is still seizing 5 minutes later then an ambulance has to be called but no other rescue meds to be given. This is a big improvement and I am really happy that the time has been reduced but I am also terrified.

Terrified because this will be similar to how it all was a few years ago. At one time we ended up calling an ambulance 3 times in one week! Once in hospital, we were often there, weeks at a time, away from home and I was torn between being there for Jack and still being there for Holly. My stress levels were so high and I felt like I was on a constant adrenaline rush and not in a good way I can assure you!

source

The difference between now and then is that Holly is now 17 and if Jack is transferred to a hospital further away, then she is old enough to be left on her own if need be. Diz has already offered to come and stay with her if the need arises so I know that the two of them will get on just fine.

I wont get the new protocol for a few weeks yet so it is not in effect yet. Hopefully by that time Jack's new dose of meds will have kicked in and the VNS will be more effective too.

Then Wednesday night, I took Jack to see Holly in her show with the Out of Darkness Theatre Company. It was called The Dark Cabaret and was held in Buckie High School to highlight bullying, fitting in at school, peer pressure etc. It was really good, very well done and highly entertaining considering there were only 3 people on stage. I missed the first ten minutes of it because Jack had a seizure and needed changing so I was panicking that Holly would think that we hadn't come to see her but then she caught sight of us when Jack made a noise. I was able to give her a wee wave and I could relax then.

She had such a laugh doing this and she came home with a big fat cheque so that can't be bad for doing something that you absolutely love.

Respite

This is supposed to be a weekend off for me. Jack goes into overnight respite for a weekend once a month and by the time that time comes around I am usually exhausted! Got a phone call early this week saying they are short staffed and have no cover for Saturday night so I had to take Jack home on sat. Luckily they managed to get cover til 8.45pm but I still lost out on a night's break.
Same thing happened last month, it is so unfair as you then can't plan anything in case they cut your weekend short again.

Caring is not like a normal job, your working hours consist of 24 hour days, 52 weeks a year and days off are rare and can be cancelled at short notice and you don't get them back at a later date!

Getting a babysitter is a nightmare as they have to specialized and able to give cpr, rescue meds for seizures, be familiar with PEG feeding, see to all personal care and have training in VNS Magnetic therapy! Think I am looking for superman/women don't you? No just another me! lol

That weekend is so precious to me as it is the only time that my life is "normal". Any other time my life revolves around Jack's disability and trying to be a good parent to Holly at the same time.

Today (Sunday) I am just sitting doing nothing as I am so tired I don't wanna move lol