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...