My son can hear!

So it is now a week since my son finally had his ENT operation, grommets and adenoids taken out.

We were up early as the admission time was 7.30am. We left my mums and just missed a bus, then next one was due 15 minutes later. But the time came and went, by the time the next bus came it we were pushing it for time. After a tube ride we got to Kings Cross and then it was a short walk to the hospital.

We were taken up to the ward and given bed 10 which made my son very happy for some reason. He got on his bed and was quite happy reading while the anethatist came to talk to me. He asked if I had the letter from the Brompton saying they were happy that he could have the operation. So he was signed off ready for the op, he had magic cream put on his hands, so he would not feel the cannula going in.

We went down to theater with him and it was decided that he would have the anaesthetic gas to put him to sleep before they put the cannula in. He fought the anaesthetic and the anethatist had to turn the gas up a couple of times before he went off.

Test

This is a test

Sleep deprived EEG

What is this I hear you ask.

Well what happens is for a 4 year old, my son is 4 and a half he will have you know, you have to keep them up to midnight and then they get to go to sleep for four hours. After this you have to wake them up and they need to stay awake until the appointment. Our appointment was for 9am, with the test lasting for two hours. The reason they want him sleep deprived is to have him sleep while they perform the test.

Keeping him up was ok until he did fall asleep for about a minute and I had to pick him up make him walk around and give him sweets. We also had his favourite programme on, Top Gear and he played Race The Stig when he got really tired. When we got to midnight he fell asleep so fast, myself on the other hand I finally fell asleep at 1am but it was not a peaceful sleep as my son snores! (an ENT issue which I will update you about at a later date)

The alarm soon came and it was a struggle to wake my son. In the end I picked him up and made him walk until he was fully awake. I offered breakfast but he didn't want any, but he did accept a milkshake. I then put more Top Gear on to try to keep awake.

Then at 6.30am it was time to wake up my daughter and get her ready for school. Now that she was up it was easier to keep my son awake. We dropped her off with our neighbour who was taking her to school. It was now us in the car on the way to the hospital. This was the longest journey ever trying to keep him awake, we had the windows open and he was playing Race The Stig.

Once we got to hospital we had a wait before going in for the test but my son found some very noisy toys to play with. It was then time to go in, this was the part he didn't like very much. Electrodes were placed on his head and he was placed on a bed. By this point he really didn't want to stay and tried to get up, but we got him to stay and the lights were turned off and the Dr left.

After about 10 mins my son tried to get back up again and the Dr came back in. We decided that my son would be better to go to sleep on my lap. So in the most uncomfortable chair I have ever been in he was placed on my lap and the lights were turned off again and I tried rocking him to sleep. This time it worked and an hour and a half later I had dead arms, I didn't realise that he twitched so much while he slept. The doctor came back in and asked me to wake my son up, it took a little while but we got there in the end.

After all the wires were taken off we were allowed to go home. I should have the results in seven to ten days.
He was given a certificate for his bravery which he insisted on taking to school to show his friends.

Hello Moriarty

So we have a new kitten!

He came to live with us on Saturday after my.daughters birthday party. She thinks he is her present, well his is sort of. She gets to play with him and learn to look after him but he is my husbands and my responsibility.

Our other two cats are scared of him, they have gone into hiding. But our oldest cat Sushi will stay in the same room with him for a while as long as he doesn't jump on her tail. Today after dropping my children off at school I came back and let Moriarty out of the bathroom and Sushi smelled him and walked away so we have some progress.

Baskerville on the other hand is so scared of him he is hiding in my room and only comes out for food, litter tray and company of myself at night on the bed. But at least we haven't had any fighting. I am just going to let them get on with it and not force contact between them.

So after only two days it is going well.

Back to school

So today was the first day back at school.

It was my son's first day in reception class. I was not sure how I am feeling about it with so many things to sort out. I had to remember PE kits, book bags and water bottles. Well I forgot the water bottles but I'll not forget tomorrow, it is a good thing my children now get free school meals, one thing I can thank the government for.

We got to school the children were so happy to see their friends. There were new children in my son's class, he was not to sure about them yet.
Then it was off into class, there was a little tear in my eye. I think I'm going to miss not having to pick up my son at lunch time.

But the time at home went so quickly then it was time to go pick them up.

I waited outside my son's classroom and kept an eye on my daughter's classroom to see who would come out first. My daughter won, so I went to her and she gave me her book bag which had her first lot of reading homework.

Then my son's class was let out. He gave me his book bag which came with his first library book, a book on trucks as he couldn't find one about cars yet. He also came out with a letter with a picture of the class and what they had done. I couldn't see my son in the picture as he was hiding.

Now I have two tired children who have to do it all over again tomorrow.

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.

My poorly boy part 5

Well I have been so busy with all that has been going on I have not been able to keep the blog updated. Since the last post everything stated below has happened.

My son has been to see paediatric cardiology team under Dr Till at The Royal Brompton. After he was admitted as a day case patient for a scan of his heart. See previous blog.

When he was admitted for his scan, an echocardiogram, we were given a bed and he had an ECG done, these are not his favourite things but he is getting used to them, now that he has had so many. After the nurse did this I was told there would be a bit of a wait before we were called in for the scan.

A short time later we were taken by the nurse to the room where my son would have his scan. They use an ultrasound scanner, the same equipment that is used to show a pregnant women her baby, to scan his heart. My son really does not like laying on hospital beds but he was really well behaved, bribery of a new toy car did the trick. The scanning lady put some gel on his chest and began scanning him. I watched the scan pictures while my son watched a film that was on a TV screen on the wall at the bottom of the bed. It was interesting to see my son's heart, not that I knew exactly what was being shown. I could make out the valves but that was about it really. This procedure was over in about 15 mins.

I then took my son back to his bed and we had to wait for the doctor to come and discuss the results with us.

The two doctors didn't take long to come and see us. We were told that the scan was normal so that was a relief. While I was trying to listen to the doctors my son was running round causing mayhem, and he promptly climbed up on a chair and fell off. It was a good thing he was wearing his helmet which my mum got him or he might have had yet another bump on his head!

So the plan was to put an event monitor on him for two weeks and hopefully he would faint and the doctors would be able to see what was causing all this to happen. We went and had this monitor put on. See photo below. After leaving the hospital we went back to my mums to wait for my husband and daughter to come and pick us up after she finished school for the day.

Now unluckily for us we all came down with the winter sickness bug! My son started with it first which seemed to stop him from fainting, I think mainly because he was laid down all the time. Then two days later I came down with the bug and within two hours so did my daughter.  My poor husband had to look after all of us taking two days off work with only one paid as emergency leave the other he had to take as holiday!  

But lets get back to my son and his fainting.
The monitor was on my son for 10 days and in that time he fainted 4 times. With the last faint being on the day we went to see Dr Till's team. We got there early and my son had to have another ECG, this is normal practice when you see a cardiologist.

After a little wait we went in to see the doctor who introduced himself as Dr Roses-Nouguer. He asked all sorts of questions regarding Paul's medical history and also mine and my husbands all the way back to our parents and our uncle's and aunt's. My sister is also being investigated as she is now fainting too, her doctors currently think she has a very mild form of Vasovagal syncope. 

After all this the doctor said that they also run a gene clinic and he would like to have us tested to see if there is a genetic link causing this, it will not help us but could help others in the future. The doctor thinks that my son also has Vasovagal syncope due to the history and the fact that the EEG came back normal. 

Now all we are waiting for is the results from the event monitor which will decide whether my son will be put on medicine or needs a pacemaker. 

He will need a pacemaker if he has any heart pauses or significant bradycardia. If not he will be put on medication, one of which I am currently taking myself. 

Our next appointment is in June and on the same day I am also seeing my consultant as I am having chest pains with pins and needles going down my arm. They come on suddenly last for about 10 minutes then go away just as quickly as they came. I have been to my GP while having one and the ECG has come back normal. So we are putting it down to stress but I have been told that if I get anything more painful or feel really unwell with them I must got to A&E.

So there you are, some eventful few months since my last post.

Sons EEG

Today we had my sons EEG

Arriving early we were seen late. The specialist who did the EEG explained that he was going to measure points and mark them on my sons head.

Next the specialist put cream on these specially marked points. The cream cleaned the areas ready for the electrodes to make good contact with my son's scalp. Then 23 electrodes where glued into place with a suger paste. The electrodes that where put on his forehead had to be kept in place with tape. After this a fabric lattice cap was put on his head.

While all this was going on my son was happily watching a dvd of Thomas the Tank Engine, which was supplied by the hospital, they really know how to keep children entertained during this test.

We were then ready for the test to begin. For the first few minutes the system checks that all the electrodes were connected properly. Then the test starts. My son was first asked to close his eyes for 10 seconds then open them again. After this he just had to watch the dvd. This happened three times throughout the test, which went on for about thirty minutes.

The whole session was recorded and will be reviewed by a neurological specialist in the next couple of days. Hopefully I will have the results soon.

My poor boy part 4

Ahhhhhhhhhhhhhhhhhhhhhhhhhhh
Today on the way home from picking up my daughter. I get a phone call from The Royal Brompton asking why I had not been at an appointment for my son to have an eco cardiogram and review!!!
This is news to me. I have had no letter or phone call informing me of this appointment.

My Poor Boy Part 3

Yesterday was a very very stressful day.

We ended up in A & E yet again as son fainted 4 times :(
So lets start at the beginning...

It was just another normal morning we got ready for school and walked out the door. But on the way to school he fainted. As he didn't hurt himself we went to school. Nothing happened while he was in school. On the way home he fainted again hurting his hand, this is NOT normal for him, we have had only one on a fainting day up to this point.

We got home and had lunch, after lunch we were off out again, as I needed to get my own medication from the chemist before going on  to Little Cherubs, our church toddler group. Tuesdays are a very busy day for us. On the way to the chemists he fainted again, so now we were up to three times. I did say to him that we needed to go to the hospital, to this he was not happy at all. He wanted to go to cherubs no matter what. I was not happy that he had fainted three times I said that if he fainted again we would be going to hospital.

While at cherubs he was fine, a little more clingee than normal but all fine. We had loads of fun and eat meny pancakes, it being pancake day. Then it was time to leave an pick up his sister from school. On the way he fainted again so we needed to go to hospital.  But first to get to school to pick up my daughter. When we got there one of her friends dads said she could go home with them while I went to the hospital. To get to the hospital we went by bus, I should really have called an ambulance but I was so worried that I just thought got to get there, how do I get there, by bus, so that's what we did.

Once there we saw the nurse who took his blood pressure which he didn't like very much. She also checked his eyes as on the last faint he hit his head. Then we had to wait to see the doctor. As normal in hospital this took ages, once we did get to see the doctor and explained want had happened we had to see another doctor. So another wait but while we were waiting he had to give a urine sample. He was really not impressed with this.

After a long while we got called in to see a more senior doctor. At the same time he had to have an ECG, he hates these and keeps moving when he is supposed to stay still.
After talking to the doctor and explaining everything again, the doctor said that there is not much that they can do except try and get his appointment with The Royal Brompton brought forward. They also said that they will try to get his EEG sorted too even though it was only ordered on Monday.
He did say we could stay in but my son was having none of it, and he is better off home anyway in the doctors opinion.

So there you have it more waiting for us...

My poor boy part 2

Well today we had another ENT appointment.

We get there and try to find a parking space at the hospital which is near impossible. So after 10 mins of going round and round we find a space, the first 15 mins is free. So we leave the car and go into the hospital. Total cost of parking £3.70 for an hour and a half!!!

At the clinic we spend a while waiting for a hearing test. This time it started with the ear pressure test which still came back as a flat line in both ears. Then for his normal hearing test which was very poor.

So now for another wait to see the doctor. The doctor was a very lovely lady doctor who immediately said he needed an operation, which is what I was saying all along.

But now we have a new problem he can't have the operation until we get a doctor to clear him because of his fainting which I have been told is not due to his ears. The ENT doctor will also write to The Royal Brompton to see if we can get him seen earler than the 12 May as he really needs this operation.

So now we wait.

My little boy is 4

How did that happen?

All he wanted for his birthday was to spend the day with his sister, daddy and me with pizza.

So we spent the morning opening his presents, most of them being cars.

In the evening we ordered pizza then had cake. Which was yummy.

My poor boy

Well we go from a perforated ear drum, which is now healing nicely, to fainting.

On Sunday my son fainted at Sunday school and ended up with a nice minor injury to his head. Then on the way to the doctors on Tuesday he fainted again hurting his hands. The doctor just said it was down to his ears, but she would request some blood tests.  These tests are going to be done next week.

Then on Wednesday after we had eaten dinner he fainted again. This time into some bbq sause which went flying, ending up over the floor and my curtains, he didn't hurt himself luckily. The curtains ended up in the wash and had to be rehung wet.

Then yesterday on the way to school he fainted again this time hurting his knee and hands. But he couldn't walk so I had to carry him to school, crying,  and clean him up. At this point some of the other mums said that I should take him to A&E, I was thinking this myself anyway.

So off we go to hospital and he has lots of tests which he was not happy about. He hated the blood sugar test, where they prick his finger to get some blood and then test it, much crying was had. He also did two urine tests, the first one he weed into a very big pot but the second one he had a very small tube type pot. He was not impressed with this pot as he had to put his willy in the pot so we could get a sample.  Then we had an ECG which came back abnormal. With my history they have made a referral to The Royal Brompton for him. We were there most of the day and the doctors did want to keep him in. But he did not like this very much and in the end we got released as the doctor said he would be better off at home.

Lets hope we get some answers soon.

Perforated ear drum!

My poor boy has a perforated ear drum!

On Monday night before bed he came to give me a hug and as he did he screamed in pain. He said his ear was hurting. So I gave him some painkillers and tried to settle him.

Not much luck was had and he ended up sleeping on the sofa with me. I am still sleeping downstairs as I can't get comfortable in bed as I am still getting over my pluracy.
Sleep was in bits that night.

The next morning off to the doctors we went. He was crying so much whenever his ear popped. At the doctors we found out he has a perforated ear drum and infections in both of his ears.
When the doctor asked him if his right ear hurt he said no, even though the doctor told me that the infection had been going on for at least a week.  We were given antibiotics and painkillers, then off we went home.

A few hours later there was lots of screaming and blood pouring from his ear. I didn't know what to do so I ended up calling the doctors again. So for the second time in one day back we went. Luckily the bleeding stopped after about an hour.  The doctor had another look in his ear but could not get a very good look at his ear drum as the ear was full on puss and blood.

Now we have to go back in a week to see if the antibiotics have worked and if the doctor can then see the extent of the perforation.  Lets hope that the doctor can see that it is healing up nicely. If not we could be in for surgery to get the hole fixed.

Pleurisy

Well this is what I currently have!

It is bloody painful I can tell you. I am on my second lot of antibiotics and I seem to be getting worse. 

I have been told to rest but with two kids and having to walk to and from school six times a day is not helping. I almost called and ambulance today as I was in so much pain and having palpitations :( my pacemaker has been going off loads too.

I just hope it gets better as if it doesn't I might need to go into hospital to have the fluid drained from the lungs :(

This will not be good as husband will have to take time off work to look after the kids.

But I did have a good moment today as when husband came home he had a bunch of flowers for me and a lemon tart.

New years resolutions

So it's the new year and the traditional thing to do is list some resolutions. I don't normally do them but this year I think I should.

1) Loose more weight and get to a size 10. Currently down at a 12.

2) Sort out all my health problems.

3) Write a children's book

4) Find a job after son starts full time school.

5) Try to keep my house clutter free
I think five is a good start. Lets see if I can achieve them.

Wish me luck.