Holiday time

Well it is the annual holiday time for us.

Day 1

I got up really early, I so could have stayed in bed. But I needed to do a few things. First thing was make some bread in the breadmaker, it is always nice to have fresh bread. Then I had to put the dishwasher on as I forgot to do it the night before. I checked I had packed everything we would need, we always forget something. With loads of time to kill before we needed to be on our way. I sorted out a note of the cat sitter and hoovered the house. This woke up my son who decided that special yogurt, corners you know the brand, was for breakfast, these needed to be used up so just this once he was allowed one.
My daughter on the other hand didn't want one.

Almost time to go and we had to get the car packed up. Our poor cat Baskerville had to be shut in the bathroom or he would have been out the front door so fast and it would have taken ages to get him in again. Once we had packed the kids in the car we did one final check of the house let Baskerville out of the bathroom and left the house. But we were not quite on our way yet. First I needed to drop off the keys to our cat sitter and give her all the information she needed.
Then we finally left.

We were travelling nicely on the motorway until we came to junction 28 of the M25 and straight into a massive traffic jam. It took more than half an hour to get to the Dartford crossing. When we finally got through we went to the A21 down to Hastings as we were going to stop off and get some shopping before our final destination of Rye Harbour. But there was more traffic jams on this road so we ended up taking the A268 to Rye instead and we would go shopping later. When we finally got to the cottage my mum, sister and brother were already there and we were joined about 20 minutes later by my sisters boyfriend who had come down on his bike.

After a short rest my sister, her boyfriend, my brother and my husband and myself went for a walk. We found a Martello Tower, the local shop, a nature reserve and two pubs. When we got back it was almost time for dinner so we decided to try one of the pubs out. I had fish and chips so did the husband and the kids had pizza and chips with salad. The children's meals came with a drink and ice cream for pudding.

When we got back the children had stories and when to bed. They are very happy as they have bunk beds here. But the rule is that my son is not allowed to go on the top just in case he faints.
This is a trial run to see if they are ready for bunk beds at home.

When the children were in bed everyone except my mum and kids went to get some shopping in Hastings. We would never have found it if we had come earlier in the day. Then it was back to the cottage and bed.

Day 2

After a bad night sleep, the bed was really hard. We got up and had a lovely fried breakfast made by my sister and mum with a little bit of help from me until I dropped the salt on the floor.

After breakfast we went into Rye as it was quite a rainy day due to ex hurricane Bethera. It was pouring with rain so we ducked into the Information Centre which combined a old penny arcade with automatons which the children loved.
There was also a model of the town with a full history show. When we came out the rain had stopped. So we went to explore the town.

After 4 hours we came back to the cottage for a rest before going for a walk in the nature reserve down the road. The children really enjoyed themselves and we went into a hide to watch birds. Many hours were spent enjoying the birds.

Day 3

We were up early and were going to go to the steam railway but it was pouring with rain on and off so we decided to go to Eastbourne and go to some indoor activities. Once we got going with us in the car and my sisters boyfriend, Uncle E following on on his motor bike.
Poor Uncle E got caught in every shower the weather could throw at us.
But when we got there all the rain had stopped but it was very windy.

The first place we visited was The Redoubt which the children loved see pics below. We then took a walk along the beach and saw the damage done in the recent fire on the pier. It looks like it will be a long time before it will be open again for business.

By this time the children were getting very hungry so we did what you do when you go to the beach, you get fish and chips. The fish was very yummy and so we're the chips. We then went to a "How we lived then" Museum of Shops. My daughter and husband did a quiz as they went round. They got 100%. After we had finished we went back to the beach so the children could play.

The best game they came up with was getting a stone throwing it into the sea then running away from the waves. The waves almost won a few times. We also had ice cream which was a highlight for the children.

It was a better trip back to the cottage as the weather was sunny. The only thing was the traffic but we were travelling at rush hour along the coast road.

Day 4

We woke up after a very very loud thunderstorm. It was still raining, well showers, but today was the Steam Train trip and my sisters boyfriends last day with us. We got to the Kent and East Sussex Railway station in time for the first train of the morning. I took a photo of my children and husband by our train. We got on a carriage and we had a compart all to ourselves. The train went all the way to Bodiam Castle. The children really enjoyed themselves travelling on the train. After we got off at Bodiam we got some local homemade fudge, the bit that I had was very yummy.

Bodiam Castle is a National Trust property. The day we went they had people showing you how they made coins, pots and did woodwork in times gone by. Both my children had a go at minting a coin. My daughter almost dropped the hammer.

Both my children wanted to go up the towers, they have no fear. So they went up them with Uncle M and my husband. They were joined by Uncle E, my sisters boyfriend, up the second tower. By this time the children were getting very hungry and we thought we would go to the local pub. But upon sitting down found the main meals were over £13 and there was no childrens menu. So we promptly left and ended up in the café in the grounds of the castle. This was a much cheaper option and a burger was only £6.50 half the price of the pub.
Then it was time to come back on the train.

My daughter fell asleep on the train home and so did her daddy. When we got back to the station we went into the museum and while we were almost at the end a bottle of pop that was in my brothers rucksack went bang and shot the top off the bottle. That gave us a fright and the person who took our money came running in asking if everything was ok. I think he was relieved that it wasn't one of the exhibits.

After we left and went back to the car it was time to say goodbye to Uncle E, he had work to go back home too. He got on his bike and was gone with a wave goodbye.

We went back to our cottage for dinner and that was the end of day four.

Day 5

Today we woke up to sun shine and it is Battle day. As we are in 1066 country we had to go to Battle Abbey and town. If you are going get there early as the English Heritage car park gets full very quickly. We had a really good time and the children let off a lot of steam. When we had been round the abbey it was time for lunch and today it was Italian. We had a really lovely meal and pudding was amazing and so so yummy. With full bellies we left Battle and headed back to Rye for a look round while it wasn't raining. But low and behold when we got there it started drizzling, it didn't last long though.
Then it was back to the cottage and dinner of chip butty and a night in of watching Great British Bake Off.

Day 6

Up early again this morning and to sunshine which was a bit of a surprise, it was supposed to be raining all day.
Due to this we were going to The Observatory Science Centre at Herstmonceux. We really enjoyed this place as the children could try out all the experiments and there was a science show where they made lots of bangs, this the children enjoyed very much.

After a very long time we got hungry and stopped of at a small town for a quick bite for lunch. Then it was on to Pevency castle for the afternoon. While we were there the only two flying Lancaster Bombers flew passed on their way to Eastbourne.

Day 7

Is the last full day of our holiday as day 8 is going home day. We went into Hastings to the shipwreck museum and the fisherman museum. Both of these are free entry and really informative. The fisherman museum is housed in St Nicholas church which was the church of the fisherman of Hastings. We had a packed lunch on the beach with the seagulls watching us. Then the children, my sister, husband and myself went for a little paddle. Well if you're on the beach it is a thing you must do.

After our car park time was up we came back to Rye to pick up some biscuits for my husbands work, he always has to take something back.

As it was our last night we went out for dinner. We found a lovely pub called The New Inn Winchelsea, why is it always that you find a hidden gem of a pub on the last day?

Day 8

Time to leave and come home. The morning was spent finishing the packing and putting everything we had bought into the car ready for the journey home. We did come back with an extra though, one Uncle M came back with us to stay for a few days.

So that's it our holiday over for this year.

My poorly boy part 6

Well today we went back to The Royal Brompton.

We got there early and were the first people there, we even beat my son's consultant. It was a while before we would be called in so my son played in the waiting room. At this point I should say thanks to @bromptonsupport for the many toys that are there for the children to play with.

We were then called in to see Dr Till. She showed me the results of my son's latest heart monitor, they were all normal, which they would be as he didn't faint. So we spoke about the results of the previous heart monitor, which picked up a fast heart rate when he fainted. But she could not give me a reason why.

The plan is now to have my son seen by a proper neurologist, not a pediatric doctor with an interest, Dr Tills words, and have another EEG but this time a sleep deprived one.

So the conclusion is that this is either neurological or blood pressure related. If it is blood pressure my son can't have a tilt table test until he is 7. Which means we may not have a diagnosis before he is 7.

We also spoke about how my son would cope at full time school, which starts in September. Dr Till sent us to see the Paediatric Electrophysiology Clinical Nurse Specialist who is going to write to my son's school with a care plan for him so the school will know what to do when he faints.

Now I just have to wait for the neurologist appointment to come through. But we at least we have ruled out my condition as a cause. He still might need a loop recorder but while he might need to have a brain scan Dr Till thought it was best not to put one in.

Well that's it for now the next Brompton appointment is in 6 months time.

An interview with my children 2014

I did this interview last year and thought it would be good to see what has changed. My children are now 5 and 4 years old.

So here goes...

What is the meaning of life?

S - to eat.
D - I don't know.

What do you want to be when you grow up?

S - Rally Car Driver
D - Horse Racer

What brings you the most happiness?

S - Buying toy cars
D - Playing with my three boyfriends

When do you feel most loved?

S - with daddy when he reads stories
D - when I am with mummy and daddy

What are you afraid of?

S - Monsters and Mummy leaving me
D - Tarantula spiders

If you had one wish, what would it be?

S - I want many Aston Martin Cars
D - to ride a flying unicorn

What is the funniest word?

S - Plop
D - Poo

What is the hardest/easiest thing to do?

S - work like daddy/drive a rally car
D - walk and hop at the same time/crawl

What is the best/worst thing in the world?

S - really good cars/worst cars (lemons, as in Cars 2)
D - kitty cat doctor game/brothers poo as it stinks

What makes you mad?

S - Baskerville biting me
D - when my brother farts!

What is the meaning of love?

S - Mummy I love you x
D - playing with JH my best boyfriend

If you had all the money in the world what would you do with it?

S - Buy a rally car, a normal car, a porshe and a DB9
D - Buy 1,000 kittens

So thats it and we have found out that my son still likes his cars and my little girl has found boys!!!
And toilet humor!

Lister Hospital is rubbish

Well, after all the preparation getting my son ready for his ENT operation (grommets inserted and adenoids removed) and attending his pre-op appointment, where we told that everything was in order, the Lister Hospital in Stevenage, Hertfordshire, decided to cancel it indefinitely!

My husband and I were fuming. The Lister had asked for written confirmation, from the Royal Brompton hospital, that they were happy for my son to be put under general anaesthetic. We obtained this and I handed the letter to the nurse at his pre-op appointment.
The letter confirmed that my son's ECG results were all normal and that his heart was structurally sound - but this was not good enough for the Lister.

The following day I received a phone call from the nurse, to say that the operation could not go ahead until the Royal Brompton had diagnosed my son's condition. This could take months, if not years! Our consultant at the Royal Brompton had warned us that the anaesthetists at the Lister might not be sufficiently experienced to handle my son's case, but I had naively assumed that a more qualified anaesthetist would be brought in if that was the case. But no, they flatly refused to operate as it was 'in his best interests'.

I pointed out that my son needs the operation urgently as he is falling behind at school, due to hearing loss, and asked if they would still refuse to put him under general anaesthetic if he was hit by a car and needed surgery. The nurse said that they would, of course, operate under those circumstances as that would be an emergency, rather than elective surgery.

She then asked why the Royal Brompton hospital couldn't do my son's ENT operation. I was somewhat taken aback and pointed out that the Royal Brompton is a specialist hospital that deals with heart conditions, not a general hospital.

She then instructed me to contact my GP to get my son referred to the ENT hospital in London - which is where I had originally asked for him to be referred but my GP had insisted on referring him to the Lister!

Okay, fine that's what we'll do... or will we?

Forty-five minutes later I receive another phone call from the same nurse, this time using a mobile phone, to say that there would be no referral as the Lister consultant did not think that any consultants at the ENT hospital in London would operate on my son either.

Oh, really?

The following day, we sent an email to one of those consultants in London and he said that both he and his anaesthetist would be happy to perform my son's operation. I have therefore instructed (not asked) my GP to refer my son to him as soon as possible.

The Lister will not touch my son with a barge-pole and the feeling is mutual.

More hospital appointments

Yesterday it was The Royal Brompton Hospital day for both me and my son.
My son's appointment was for the morning and mine was late afternoon.

We decided that we would go from my mum's house and take the bus, well two busses, which did take about two hours. But the children loved it, this was much better than the underground as the children can see where they a going. When we got there my son was booked in and taken for an ECG, he is getting really used to these now. We waited to be called into see the doctor.

This clinic is a busy one and a wait is quite normal. We were called in and the doctor told us that the results from the heart monitor were inconclusive. So we now have to have yet another heart monitor put on and if this doesn't catch it he will need a loop recorder implanted (internal ECG see my post from last year about the one I had implanted). Now we are waiting for a appointment to have this monitor put on.

On another note I am also waiting for an email with the confirmation that my son can go under general anaesthetic for his ENT operation. From The Bromptons point of view there is no reason why he can't but it will all depend on how much experience the anasetist has.

Doctor Till my sons doctor said he is a complicated case.

After we finished we went to the Natural History Museum to kill time before I would need to go and see my consultant, Dr Salukhe, in the afternoon.

When it was time for my appointment I was weighed and I have lost 11kg since having the pacemaker.  After a wait I went in to see my doctor and he said I was looking very well. I explained that I am having chest pains, so I have been given an appointment to have my pacemaker interrogated to see if there was any change in rhythm. I also need to have stress eco done which has been booked for the end of June.

Well that is all for now. Back soon with more updates.

Update on sons ENT

Well I got a phone call from the ENT admissions saying that my sons grommet operation will be on the 24th June and I am to bring him in for his pre op assessment on the 2nd June. This is impossible as we are going to The Royal Brompton for a follow up appointment to find out if he will need a pacemaker.

So upon telling them this I get told that I need a letter from them saying he can have the op. But they have already been informed by The Brompton by phone which is why he is back on the list for his ENT operation!

Now I need to phone Brompton and get them to write the letter so I can take it to the ENT pre op, which I have not even been given yet!

After I have seen the Brompton I will call ENT and confirm I have the letter and then find out when his pre assessment will be. Unless I get a phone call from ENT in the meantime.

What a load of rubbish this is not doing the NHS any favours.

Waiting always waiting

Why when you have something wrong do you have to wait so long?

My son is now back on the ENT waiting list for his grommets to be put in. I found this out before we had to go to the GP for yet another perforated ear drum :(
The poor boy is back on antibiotics and painkillers.
This all happened on a misrable Thursday when it was raining.

We went to school as normal and everything was fine. But once I had picked my son up from school at lunchtime, he only goes to school in the morning, he fainted on the way home. As I said it was raining and the path was wet so he got soaked. He is also now quite heavy now and it is a struggle to carry him.

When we got home he said to me 'Mummy I don't want to faint any more, please make it go away' he then started crying which made me cry too. I didn't know what to say to him. If I could take it away I would, I am the one who gave him the condition in the first place. But I must not think like that.

So we had lunch and then he fell asleep but woke up a short while later screaming that his ear hurt. So I got on the phone to the GP to ask for an appointment for that day. But was told that there where none available and all they could give me was the next day. So I explained to them that he was 4 and under ENT waiting for an operation and that he needed to see someone that day. So the receptionist left me on the line while they went to talk to someone. When they came back to me I was told to bring him down at 5pm and I would have to wait.

So we went down and were sitting in the waiting room at 4.40pm, I don't like to be late, and we were called into see the doctor a few minutes later. The doctor looked at his ears and then asked if she could show a trainee doctor his ears. Our GP then got the trainee to look in his ears saying that unlike other children with his condition you can get a really good look at them and he doesn't cry or scream at you. So the doctor said that he had another perforated ear drum.

Back on the antibiotics and painkillers for the poor boy.