If you don't laugh, you'll cry!

There's a saying "If you don't laugh you'll cry and that was so true when we had that bit of drama and a stay for Ellie in hospital. We had to find the smallest things to keep our spirits up and we found plenty of things to chuckle about.

Mc'Doctors!

If you have seen Grey's Anatomy you know Derek Shepherd is called McDreamy and Mark Sloan is called McSteamy. Well we met a few doctors and nurses that we named. McOlivia who reminded us of our friends daughter who works in a hospital, she looked like her and was so kind like her. There was McStabby who got a bit enthusiastic when he was trying to take blood from Ellie and McFunny who was a nurse who kept us laughing throughout the night.

Football on the TV.

When we were sat in A&E at about half past seven you could see all the men getting antsy, they were wanting to watch the England match. One man took charge and started trying to switch on the TV that was on the wall. One of the reception staff came out with a remote and there was a cheer when they got the football on just as the teams were singing their national anthems. All the men were crowded around the TV including my dad.

Old People!

Old people are hilarious. They have no time for faffing around and they definitely know what they want. A woman in the bed opposite Ellie was given her lunch and said I am not eating this crap, she demanded beans on toast and got it! Another woman wanted water which was colder and said in fact just get me some ice cubes. A woman was telling us about the blood she was getting delivered from Barnsley, she had a rare blood type and thought it was so funny they had none in this hospital. 

Not what she ordered!

On the first morning Ellie was in hospital she panicked when the nurse came around with the menu for lunch and just asked for a ham sandwich. By lunchtime Ellie had moved rooms and it turns out she got what the previous person had ordered. Orange Juice, some sort of green soup which she loved, Lasagne, mashed potato, chocolate sponge cake and custard. It was such a nice surprise. After lunch she ordered her tea and then ended up changing rooms so got another surprise meal. This time it was not to her liking so she ended up with tomato soup, a ham sandwich and chocolate and vanilla mousse. It turns out hospital food is not as bad as she thought.

Getting lost!

When Ellie was having lunch Stu and I decided to go for something to eat. The canteen is at the other side of the hospital and it turns out most of the staff at one side do not know where it is as it's so far! We got lost several times and it was a good 15 minute walk. I said if I had been by myself I would have just sat down and cried, Stu was with me so we found it funny and Ellie found it hilarious that we had taken so long.

Snoring!

The night I stayed with Ellie I didn't get much sleep, partly because she was vomiting and partly because I had a normal chair. When Stu stayed with her he got a reclining armchair and had a good sleep, so much so that Ellie threw a cup at his head (it was just a paper one) to wake him up as he was snoring so much.

The Vampire!

On the ward where Ellie was if the struggle to get blood out of someone to test they call for the sweetest and most gentle nurse who never fails to get blood. Ellie's veins were not good, small they told us and it was a struggle but the vampire nurse did an amazing job and got enough blood. When the nurses had gone off to back where they came from all the woman on the ward were saying when you see that nurse coming you know she's coming for blood. Eek!

Good toast!

On the morning after Ellie had been vomiting the nurses asked her if she wanted some toast and she said yes, not expecting anything amazing but the toast she had was the best toast ever!! I told her how when I had her and her sister that first slice of toast after my c-section's was amazing too!! She said there must be something special in it. 

Have you ever found things to laugh about while staying in hospital?

Congenital Heart Defect Awareness Week 2023!

Every year from the 7th to the 14th of February is Congenital Heart Defect Awareness Week. It is here to promote awareness and provides education about congenital heart defects. (CHDs). I am not just jumping on a bandwagon and a cause, I have had first hand experience of heart defects which I will come to in a moment.

A congenital heart defect results when the heart or blood vessels near the heart doesn't develop normally. It’s the most common birth defect in babies and more than 1 million babies worldwide are born each year with a congenital heart defect. It’s the most common birth defect and the most common cause of infant death among birth defects.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

I had a hole in my heart from when I was born and that was discovered when I fell down the stairs and broke my arm when I was about 4 years old. I didn't need surgery.  My girls were born with heart defects too. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers and she needed surgery to fix them. You can read our full story here which I shared years ago.

Both of my girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well. After their heart surgery they were left with leaking heart valves.

Charities like Tiny Tickers want to increase early detection rates of cardiac conditions so they are not missed like my girls heart defects were missed during my pregnancies and when they were new born's. 

The causes of congenital heart defects among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. We have looked into what caused my girls heart defects and nobody knows. It could be a faulty gene from me, it has to be from me as the girls both have different father's or it could just be bad luck. There is no real way to know. The girls can choose to have tests when they were older but I wasn't going to push them into it a few years ago. It is only really going to effect them when they have their own children and then they will be monitored closely.

The CHD symptoms depend on the type of defect in the heart defect but the most common symptoms can include: Bluish lips, skin, fingers, and toes, breathlessness or trouble breathing, feeding difficulties, low birth weight, chest pain, delayed growth and a small size or low body weight, abnormal heart rhythms, dizziness, trouble breathing, fainting, swelling and fatigue.

Before Becky's heart defect was discovered she was really thin and did have blueish lips but we just that down to her always feeling the cold. Ellie showed none of the main symptoms but did sweat a lot as a baby, we know now that it was because her heart was working more than it should have been.

Children with minor heart defects may not need any treatment, some may heal on their own with time but some that have serious symptoms may need medical or surgical treatment within the first year of life. The treatment depends on the type and severity of the heart defect. In these cases, treatment may include the following:

Medications.

There are various medications that can help the heart work more efficiently. Some can also be used to prevent blood clots from forming or to control an irregular heartbeat.

Implantable Heart Devices.

Some of the complications associated with congenital heart defects can be prevented with the use of certain devices, including pacemakers, defibrillators (ICDs). A pacemaker can help regulate an abnormal heart rate, and an ICD may correct life-threatening irregular heartbeats.

Catheter Procedures.

Catheterization techniques allow doctors to repair certain congenital heart defects without surgically opening the chest and heart. During these procedures, the doctor will insert a thin tube into a vein in the leg and guide it up to the heart. Once the catheter is in the correct position, the doctor will use small tools threaded through the catheter to correct the defect.

Open-Heart Surgery.

This type of surgery may be needed if catheter procedures aren't enough to repair a congenital heart defect. A surgeon may perform open-heart surgery to close holes in the heart, repair heart valves, or widen blood vessels.

Heart Transplant.

In the rare cases in which a congenital heart defect is too complex to fix a heart transplant may be needed.

Regular follow up appointment are needed just to check on the heart, even if the patient has had successful surgery and is leading a very normal life. My girls used to go for a check up every year and at their last appointments Ellie was given 2 years without an appointment and Becky 3 which is real progress. They will have appointments for the rest of their lives because of the way their hearts are. In the past there has been talk of more surgery to fix the leaking valves which they were left with but their valves haven't changed in the last 5 years so surgery may not be needed.

Hearing that your child has a heart condition is devastating but remember that surgical outcomes in the UK are some of the best in the world and the vast majority of babies born with CHD survive into adulthood and live normal lives! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive.

Have you heard of Congenital Heart Defects before?

How my youngest is getting on with her hearing aids.

Ellie finally got her hearing aids a couple of weeks before Christmas. They were a long time coming, she was waiting for them for around 10 months because the doctor didn't refer her to the right department but they have been worth the wait and she has taken to them like a duck to water.

The hearing aids that Ellie has are CROS hearing aids. A CROS hearing aid is a special type of hearing aid for people who have little to no hearing in one ear and have normal hearing in the other ear. CROS stands for Contralateral Routing of Sound.

With CROS hearing aids, sound is wirelessly transmitted from the deaf ear into the better ear. What looks like a conventional hearing aid is worn on the deaf ear, but this is a microphone only. This microphone picks up sound from your poorer side and sends it wirelessly into a conventional hearing aid on your better ear. It is then heard and processed by the brain. 

Ellie's appointment with the audiologist to get her hearing aids took around 40 minutes. The man went over everything we needed to know about them. We were shown how to change the tubes which need changing every few months and the batteries which need changing every 4 or so days in one side and about once a week in the other. Ellie was shown how to clean them and most importantly how to put them on. She did it first try which doesn't usually happen. hehehe When she put them in and they were switched on it was emotional to see. She described it perfectly, it was like sitting in a dark room and someone switching on a light. Everything became clear and made a little more sense.

Wearing the hearing aid now means that Ellie can hear sounds from both sides without her turning her head, they don't help her realise where a sound is coming from but she can at least hear the sound now.

Apparently Ellie was supposed to start off wearing the hearing aids as long as she could and then give herself a break from them when everything became too much but she hasn't hit that point yet. She takes them off for bed, when she is in the bath and when she's on her computer with headphones on but she has been wearing them all day with no problems, headaches or having any sensory overload issues.

It sounds dramatic to say these hearing aids have changed Ellie's life already but they have. She is hearing much more and it makes conversations with her much easier. If we were on a bus and she had her bad ear towards me she would struggle to have a conversation. Now she doesn't miss a word. She was at school and her teacher was stood at her deaf side speaking and the teacher is a good one, when she finished speaking she went to make sure that Ellie knew what she was doing but because of hearing aid she had heard everything, clearly! I am sure the hearing aids will really help her at school. She came home on the last day of school before the Christmas holidays and said she had to turn her hearing aid down because she didn't realise how loud people were when they were typing on the keyboard on the computer.

I am so happy for Ellie and it is amazing how some wires and a little bit of plastic can change her life so much. We are back at the hospital in February for a check up and to see how she's getting on with the hearing aids but I can't see there being any problems apart from sometimes forgetting to put them on.

Finally a hearing appointment.

Way, way back in January Ellie had her yearly hearing check. She is deaf in one ear and gets the good ear checked to make sure it's still good. It was a good appointment as she was offered a CROS hearing aid. She wouldn't need surgery and wouldn't need to miss much school. We were told that she needed a MRI scan which could be done on the same day that she is fitted for her hearing aids. That didn't happen. They decided they wanted to see the results from the MRI before giving her the hearing aid in case they found something which meant the hearing aid wouldn't work which was fair enough.

We went for the MRI scan a couple of weeks later and it showed that she had a few tiny, old bleeds on her brain. We were shocked to say the least the the doctor was less than helpful, he told us nothing apart that Ellie needed to see a neurosurgeon, he would refer us and refer Ellie to get her hearing aid. He wasn't the nicest man, could hardly string a sentence together, didn't answer any of our questions, reassure us or show us any care. The nurse did most of the talking and tried her best.

Eight months later we were still waiting. We did have an electronic letter saying we're still on a waiting list and will be seen soon, it turns out that wasn't for either of the appointments the doctor referred us for, it was for something else. Thankfully we saw Ellie's cardiologist for a check on her heart in March and he said the bleeds were most likely caused by her heart defect either before or during her open heart surgery. It's apparently quite common and that put our minds at rest a little.

Ellie has a wonderful lady who goes into school a few times a year to check she is getting the support that she needs and she always rings me to let me know she's going to see Ellie and she asked if we had any hearing issues and I mentioned the wait time at the hospital and she said that wasn't right, she would chase it up. She did and said that the ENT department had not referred Ellie back to Audiology so she was sat in limbo. She told me to give them a ring and have words which I did. The lovely receptionist at the hospital was fantastic and could see where we should have been referred back to Audiology and can't understand why we weren't. I have a good idea, that useless doctor. I am all for people working into their 70's or 80's but when they are not doing their job properly it's dangerous. 

I rang on the Friday and we had the appointment on the Wednesday. It went really well in the Audiology department. Ellie had another hearing test and they tested the hearing aid on her which she would be getting and it seems to really help her hear more. She now has an appointment in December to get it and tuned in so it is right for her. A month, that was the waiting time, not eight!!

This is the latest results of Ellie's hearing test. On the right is her good ear with normal hearing and on the left her bad ear with no hearing. Those tests are hard to watch. Ellie has headphones on and presses a button when she hears a beep. When they test just her bad ear with a whooshing sound played into her good ear I can hear the beeps through the headphones, it's loud and Ellie can't hear it. It's sad.

We then saw a new doctor in the Ear, nose and throat department who thought Ellie already had her hearing aid as she should have by now. hahaha I explained everything and It turns out the old doctor hadn't been making referrals to other departments for people that he had been seeing! He wasn't doing his job properly. Thankfully for us it wasn't a matter of life and death but for others I dread to think. I was furious but I think I dealt with it pretty well when I was speaking to the doctor. There was a point where I had to hold my hands together because I was starting to wave them around and it's a good job I had a mask on as for a moment I was stood there with my mouth open in shock when he said the doctor is no longer working at the hospital. 

The waiting list for a neuro appointment is about 6 or so months so I said that's no good, we've been waiting 8 already, it's not our fault that the hospital/doctor messed up. The new doctor said he is going to explain everything to Sheffield hospital and will aim to get us seen early in the new year. He also said we had to go to Sheffield which I wasn't happy about as it is quite a distance and the old doctor said we only had to go as far as Hull so he is going to push for a telephone consultation first. I have a feeling we would get all of the way to Sheffield, they would read Ellie's notes on the day and then say it's nothing to worry about as the bleeds were caused by her heart defect/surgery and tell us to go on our way. Two and a half hours there and then back again is a lot of time, money and effort just for a 10 minute appointment. At least if they read her notes before they phone call they will know Ellie's medical history. The new doctor did say that they might want to redo her MRI scan as they don't always trust things from Scunthorpe hospital. I can see why, I don't trust them!

I asked the doctor if we hadn't of rang and chased the appointments up how long would we have been waiting, he just shrugged his shoulders. I can't knock the new doctor, he is just picking up the pieces that the old doctor left. He was apologetic, I kept having to tell myself it's not his fault, it is the fault of the hospital. In the end it has all came good, Ellie is finally getting sorted and that is all that I have ever wanted.

This week my Word of the Week is: Results! #WotW

This week my Word of the Week is:

Two weeks ago in my word of the week blog post, Unknown I said I was being silly for worrying about Ellie's MRI scan. The scan was just routine before she got fitted for a hearing aid and it wasn't expected to show much. I was wrong. We thought on Wednesday it was a quick chat with the consultant at hospital and then Ellie would be getting fitted for her hearing aid. That didn't happen, there wasn't much mention of the hearing aid. It turns out the doctor wanted to give us the results of her MRI scan. 

The MRI shows that Ellie has had some small bleeds on her brain. (They're old one's). The doctor couldn't tell us when from but as she hasn't suffered any major head trauma it's hard to say when. The doctor asked if she had ever banged her head badly and we couldn't think of one instance which would have caused something like that. Over the years she has bumped her head but nothing that has even caused a bump, lump or bruise. Things like bumping heads with her sister, crawling into things or heading a football. We are being sent to a neurosurgeon to shed some light on it.

I asked if the bleeds could have had anything to do with her heart (She had open heart surgery to fix a hole in her heart when she was 18 months old and now has leaky valves.) He didn't know anything about her heart issues despite having her notes in front of him in paper form and on the computer. He said it could be but that is up to the neurosurgeon to decide.

We haven't had the best luck with the doctors in Scunthorpe and the doctor that we saw wasn't the greatest, he was another stand in, was about 80 years old and just mumbled. He was there to tell us facts, using words we didn't understand and nothing else. He was reluctant to answer any of our questions as he wasn't an expert on the brain which now I've thought about it makes sense he didn't want to say anything wrong, worry us or provide us with wrong information.

The nurse again was amazing and explained everything the best she could. She did tell us not to worry about the word neurosurgeon because that's just what the brain specialist is called, it doesn't mean Ellie needs more surgery or that it is anything serious. She also made sure that as well as marking the neurosurgeon appointment as urgent the hearing aid appointment is too just to take some of the stress off us. 

I am really kicking myself at the moment. For years just after Ellie had her heart surgery the hearing doctors wanted her to have a MRI just to aid their research if I had let them do it then we wouldn't be sat here now stressing. I don't think it would have changed anything but it's still frustrating. Even after the MRI scan we are still unsure what has caused Ellie's hearing loss, they are still putting it down to bad luck and bad genes. 

Now we wait for an appointment with the brain person and the appointment to get her hearing aid fitted. I'm not going to lie and say I'm OK but I am feeling better and more positive than I was on Wednesday. I think it's the worst hospital appointment we've ever had and that includes the one's where we were told that my girls had heart defects and needed surgery but at least then there was a plan and we knew what we were dealing with, at the moment we are still in the dark. Ellie is fine though, she is fit and well and again she is taking it all in her stride.

I hope you've all had a good week?

A hearing check and hearing aids.

Ellie was diagnosed with Auditory Neuropathy when she was about 4 years old and every year she has a hearing test to check that her good ear is still good and that her bad ear is still bad. She is totally deaf in her right ear but has amazing hearing in her left.

In 2020 we didn't have the greatest appointment at the hospital, he was a stand in doctor so at the appointment in the middle of December I was expecting another new doctor and that is what we got. I would like to say he was a massive improvement on the previous doctor but he wasn't. He got off to a bad start reading the notes on his computer about a different person and started talking about cochlear implants. The nurse put him right and he apologised. I just rolled my eyes and thought here we go.

The doctor was so arrogant questioning why Ellie hasn't got hearing aids, we have always been told that hearing aids wouldn't work and why she has never had a MRI scan? We said no to it when she was little as she was recovering from heart surgery and then when she was older the doctors have said they only want to do it for their own research and nothing would benefit Ellie. It makes you feel pretty crap when doctors are questioning things without actually realising what Ellie has been through in her life. I am thinking that the training doctors get in bedside manner is given to the nurses and assistants as they are always amazing and the doctors are arrogant, rude and have no people skills.

The doctor mentioned a type of hearing aid which wouldn't need surgery and Ellie and I got interested. CROS hearing aids are designed for people with hearing loss in one ear like Ellie has. These are made up of a conventional hearing aid that sits in the hearing ear and a microphone that looks like a hearing aid which sits in the ear with no hearing. The hearing aids pick up sound from the side with no hearing and feeds it into the hearing ear. 

The doctor was asking me if I thought this type of hearing aid was a good idea and would Ellie like to give them a try? I said yes, it sounds like a great idea but it's not up to me to decide for Ellie, it's her body, her choice. Ellie didn't look convinced by what the doctor was saying but the nurse told us more about them and how they come in most colours that you could want and you could even get them to match your hair colour so they are not noticeable. The doctor said that if she feels self conscious about the hearing aids she doesn't have to wear them at school which I thought was a bit stupid as that would be where she would get the most benefit. Ugh. Ellie ended up agreeing to give them a try, she has nothing to lose apart from a couple of afternoons at school.

The doctor did say that he would like to give Ellie a MRI scan to investigate more about her hearing loss and as she is at an age now she won't need knocking out or sedating and it could be done at the same time when she gets fitted for her hearing aids which we have agreed to, well Ellie did. She loves all things medical and said she can't wait for the scan.

I don't understand why this type of hearing aid hasn't been offered to Ellie before? All the previous doctors have either said nothing can be done to help or she would need hearing aids involving surgery. It's frustrating that Ellie has got to 14 years old and she just seems to be getting the help that she needs.

We haven't had long to wait to get an appointment for Ellie's MRI scan, she has it on Saturday. I am dreading it but she is looking forward to it, she loves anything to do with hospitals.

A hearing test and a different doctor.

Ellie was diagnosed with Auditory Neuropathy when she was about 4 years old and we go to the hospital every year or so to have a hearing test to keep a check on her good ear. Ellie was born nearly deaf in one ear and lost all the hearing in her right ear by the time she was about 7 years old. We were due to go at the beginning of this year but the appointment was cancelled, understandably because of Coronavirus.

Last week, on Monday I was all set to take Ellie to the hospital to have her hearing test but hospital rang mid morning to say the appointment was cancelled because the doctor had phoned in sick, they said they would phone with a new appointment but I didn't expect it to happen so soon. They rang that afternoon with an appointment for Tuesday with a stand in doctor.

Tuesday came and Ellie got to finish school a little earlier than usual so we had chance to get to the appointment at the local hospital. 

Ellie had her usual hearing test which went well but the nurse doing the test was a little confused half way through when it seemed Ellie could hear through her right ear, the bad one. She did the test again playing noise into her good ear and it became clear she had no hearing at all in her bad ear, Ellie just has amazing hearing in her good ear. 

We then went into see the doctor and within 2 minutes of us being in his room he had rubbed me up the wrong way. He asked why we were there, I explained to have Ellie's good ear checked and then said why did we not go to the hospital in Newcastle, err because it's nearly 150 miles away from where we now live. The nurse in the room had to explain we moved here from Northumberland last year and were transferred. He then went on to say measles or a viral infection must have caused Ellie's hearing loss. Again myself and the nurse explained that she was born with a little hearing and then lost it. He then said where is her hearing aid, she doesn't have one. The doctors in Newcastle said one out of the ear would have no effect and a cochlear implant had little chance of working. 

Someone hadn't read Ellie's notes. lol I know her folder is probably the size of a 80 year old's with all the medical issues she's had over the years but come on the least he could have done was skim through it.

The doctor then went on to suggest a MRI scan and I said no and asked what it would achieve? I already knew the answer, he wanted to do some research on her which would make no difference to Ellie and her hearing. He then back tracked and said we won't do a MRI as it probably won't give us any information to help Ellie. It's not my first rodeo, the doctors at Newcastle wanted to do the same, just to aid their research. 

He then started pushing the hearing aid again. Ellie has already said she doesn't want one. She copes well without one and has for her whole life. I think giving her a hearing aid wouldn't benefit her, she has adapted to her hearing loss and it's all she's ever known. If her hearing loss affected her day to day life I would be all for a hearing aid it but it doesn't. The doctor then went on to do further tests and said that she does have amazing hearing in her good ear which makes up for the hearing loss. He said considering she is deaf in one ear you would never guess. Exactly!!

He then went on to say we must do all we can to protect the good ear, Ellie was told that she shouldn't go to nightclubs or pubs where there is loud music or be in noisy environments like factories. Ellie is a girl of few words when she is with people she doesn't know and usually doesn't answer back but this time she looked him dead in the eye and said "I'm 13, I won't be going to nightclubs anytime soon and I am careful about listening to music". He then asked her to take her mask off so he could see her face and he looked a little confused, I am sure he thought she was older than she was! Oops.

Then he went back on about the hearing aid. Grr! I think the nurse saw that I was getting a tad annoyed and said we'll just have them back in a year, OK and that was that.

I don't feel like the doctor really cared or had Ellie's best interests at heart. I trusted the hospital in Newcastle 100% and I felt like we were on the same page. Here I don't feel like that at the moment. We are back in another year and won't be seeing the fill in doctor, hopefully! I am not his biggest fan!

A trip to the hospital. #MySundayPhoto

On Tuesday Ellie had a hearing test at our local hospital. It all went fine, she's still deaf in one ear but the other one is perfect. I was so worried about going to the hospital with Coronavirus being about but I felt safe. Everyone had masks, they were limiting people in the waiting rooms and everyone kept their distance. 

It was strange not being able to sit and wait with Ellie in the seat next to her as they taped a lot of them off to maintain social distancing. 

This week my Word of the Week is: Exhausted! #WotW

This week my Word of the Week is:

This time last week I felt exhausted, we all did here. The first week of school and having Becky's 18th birthday really took it out of us. Getting up early was a total shock to the system and I thought this week would be easier but I still feel tired, there's nothing wrong with me, I'm fit and healthy, we've just had a bit of an off week.

On Monday I was all set to take Ellie to the hospital to have her hearing test. Ellie was diagnosed with Auditory Neuropathy when she was about 4 years old and we go every year or so to have a hearing test to keep a check on her good ear. 

The hospital rang on Monday morning to say the doctor had phoned in sick and they would ring next week to rearrange. I was stressing about going to the hospital in the first place and had spent the weekend worrying but building myself up for Monday all for the appointment not to go ahead. I went to bed that night feeling exhausted!

I was shocked as later on Monday afternoon they did actually ring to say we could be seen on Tuesday with a different doctor. The long and short of it is that Ellie's hearing is no different from the last time it was tested, she is still deaf in her bad ear and has amazing hearing in her good ear. I didn't get on well with the doctor who obviously hadn't read any of Ellie's notes and was rather pushy. I stood my ground, I might have left the room shaking in anger but it's all good. We're back in a year and we'll hopefully get to see the original doctor who I've spoken to on the phone in the past and not the stand in.

By the time we got out of the hospital it was gone half five and we walked back to the bus stop. We had thought about stopping at the bus stop at the end of the high street but that area isn't a nice place when the shops are all shut so we walked into the bus station and I'm glad we did. Just as we got to the bus stop a bus driver came over and announced there had been a bad crash on the Humber Bridge and traffic was at a standstill. Our bus goes from Scunthorpe all the way to Hull and has to go over the bridge, there is no other way across the river unless you travel all of the way around. Three of our buses didn't arrive but we finally got the bus just after 7pm and got home coming on for 8pm. When we got on the bus the driver was telling people he would take them as far as he could but they may have had to walk across the bridge which is about a mile and a half long. Eek! I was so glad our stop was before the bridge.

We made it home and it was ready meals for tea, I hate eating late but it couldn't be helped. I went to bed feeling exhausted again but relived that the appointment was done with.

I woke up on Wednesday feeling achy, I thought just typical one trip to the hospital and I've got Coronavirus. Stu said it probably wasn't, I had done a lot of walking and standing on Tuesday plus the two days of stress are bound to make me ache. So I had an easy day. It was a grey and miserable day so I was in no rush to go out. By lunchtime I felt much better. Phew!

Yesterday morning as soon as Ellie had gone to school I went back to bed and had a few hours of sleep. I felt much better for it. This week our weekly meal plan has not gone to plan. I am hoping to sort ourselves out for the last few days of it but Becky has her girlfriend coming to visit today and I don't think she'll eat fish and chips so fajitas it is. lol. They've not seen each other all week with them being in college on different days so they have some catching up to do.

I feel like this week has been a total write off but it hasn't been a bad one, just a tiring one. We're ready for the weekend and hopefully we'll get a couple of relaxed days and maybe a lie in too.

5 tips for parents that are worried about their children’s scars.

As parents we know that young skin is sensitive and precious and it is natural for parents to worry that any damage will leave a visible scar.

From babies exploring their new world to school children in the playground accidents happen. More than two million children under the age of 15 experience accidents in and around the home every year and sadly some children will also suffer from significant trauma caused by surgery, burns or serious accidents.

Both of my girls have been left with scars down the middle of their chest and the top of their stomachs from the drains when they had their open heart surgery to repair the holes in their hearts.  

5 tips for parents worried about their children’s scars:

Acceptance - If your child is injured or needs surgery you are obviously going to be worried about what sort of scar it might leave. The reality is that if you have a burn or graze and it hasn’t healed in 10 to 14 days or a surgical or traumatic wound that cuts through the deep layers of the skin then a scar will form. The sooner that you can accept this the more able you are to move on to protecting and treating the scar.

Encourage body confidence -  The children who cope well with scars are those who are encouraged to talk about it. Whether it’s a small scar or a larger area it can have a psychological impact on children. So giving young people and yourself the confidence to talk about their scar and to answer other people’s questions is vital.

For years Becky has been really self conscious about the scar on her chest. She is still not 100% confident but over the summer she wore lower cut tops and you could see the top of it. Being a teenager is hard when all you see in the media is all those pretty, air brushed people with not a mark on them. I think with age she will gain confidence.

Stay sun safe - Scar tissue has poorly functioning melanocytes, the body’s natural protection against UV so it very important that you protect a scar from the sun’s rays at home or abroad. 

TLC - For the first 12 or18 months a scar is still in the maturation phase but there are steps you can take to help your child’s scar to heal well. For example, regularly apply moisturiser to help hydrate the tissue and massage the area. 

Don’t let it hold you back - It’s so important for children of any age to be outside and active so a scar shouldn’t stop them from enjoying life. While you will naturally feel cautious of any further injury you need to encourage your child to return to their normal routines. If you’re on holiday as long as you follow sun protection guidelines and protect the scar from over exposure to UV, children can play on the beach, swim in the sea and enjoy outdoor activities.

Have you had to manage any scars your children have gained or do you have any on yourself?

11 years since their heart surgeries.

This week marks 11 years since my girls and I spent a week in hospital and they both had open heart surgery and each year I like to write about it to remember how lucky we are and to share our story to raise awareness about heart defects!

If you don't know our heart story you can read the full story here. I was born with a hole in my heart and I didn't need surgery and both of my girls were also born with holes in their hearts which were missed at birth. Becky's I could understand being missed but Ellie's not. A young trainee doctor noticed a murmur but it was dismissed by an older doctor. 

The girls heart defects were only discovered after my youngest jammed her fingers in a door and needed surgery to straighten her fingers. It was a freak accident but that accident saved both of their lives. If Ellie didn't have that accident they could have been dead by now. I have been left with the thought of all the what if's?

Both of the girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect results in a is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well.

We went into the hospital on Sunday the 16th of August, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. They both recovered well and quickly. Ellie probably too quickly. She was trying to copy off the Cbebbies show Waybuloo doing yoga a day after major surgery. 

It was honestly the worst time of my life. I did write about the reality of open heart surgery but even that can't get across how I was feeling. Taking one child for surgery is bad enough but taking another less than 24 hours later. I don't know how I did it, I really don't. I have felt plenty of guilt over the years knowing the chances I passed the heart defect to my girls, it has to be me because they both have different fathers. We had basic genetic tests done but it was just put down to bad luck for now. The girls can choose to have tests when they were older but I wasn't going to push them into it now. It is only really going to effect them when they have their own children and then they will be monitored closely.

The girls are fit and well at the moment. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them.

Over the last year they have both had their hearts checked and not much has changed with them but the hospital did say that if there was no more deterioration they might not need surgery again which was good to hear but time will tell. The person who saw Ellie said I should go and get my heart checked. Partly for their research and partly just to keep an eye on me. The last time I had my heart checked was when they discovered Becky's heart defect and that was just to compare our hearts. I had a leaking valve but it wasn't as bad as the girls. I was supposed to have an appointment early this year but Coronavirus happened and I got a letter saying I will be called in when it is safe to do so. That's fine with me.

Two heart checks. Now I can relax.

We have had a few new experiences over the last couple of weeks. Visiting our new hospital and the kids getting their hearts checked.

You all know my girls have had trouble with their hearts. They both had holes in their hearts which were fixed over 10 years ago by open heart surgery but they were left with leaky valves. 

When we lived in Northumberland both of the girls always went to their heart checks together. In fact they always had all their heart dealings together. Everything from their first scans to their heart surgery. Becky had her surgery on the Monday and Ellie on the Tuesday. The Freemans hospital was wonderful and said as long as Ellie was checked in the children's clinic Becky would be too but then we moved house and here in Scunthorpe didn't play by the same rules. Hmmf.

So over the past couple of weeks the girls have had their heart check ups, separately. Ellie was in the child's outpatients and Becky in the adult part. For me it has been a worrying time but for the kids it was just a day of school and college and a chance for a look around the shops. 

Ellie's was first on the 20th of November and it was our first time at the local hospital meeting the new people dealing with her. I did write about it in my Word of the Week post but the appointment went well, better than I expected. The consultant said there is no change in Ellie's heart since last year and said if there is no change at all in the next few years she might never need any more heart surgery. She can't promise that but it is fantastic news.

Ellie's heart has always been the worst out of her's and Becky's so when we left the hospital I felt a lot less worried about Ellie and a little less worried about Becky's appointment which was last week.

Before we got to that we had a little bit of drama. When we got back from Ellie's appointment there was a letter for Becky saying unless she could prove she was a British Citizen entitled to free NHS care we would be charged for any appointments. What?!!

I got straight onto the phone and the woman (who was lovely) said it's was just sent out because we are new to the area and there was no trace of Becky being born in the UK. Oops. Years ago Becky's name was changed by deed poll and everything was good until we moved hospital and they tried to search for her using her new surname, not linking it to the old one. She said this issue happens more than you would think and all we had to do was take proof of Becky's name change, her birth certificate which links her to me and something with Stu's surname on which links her to him with the new surname when we went to Becky's appointment.

We got to the hospital early for Becky's appointment so we could see the finance woman which was a nightmare to find. We booked Becky into her appointment & asked about where the finance woman's office was. The woman at reception didn't know but did ring and the woman came to us. lol She looked at all the ID, photo copied it all and said that's the end of that. They just have to be sure that everyone who has free NHS treatment is entitled to it.

Becky had her tests and we went into see the doctor. He said that she still has the leaking valves but they will never go away. He did say as long as her heart stays the way it is she might never need further surgery.

They are going to keep an eye on her and she will be back in 18 months for the next few years, while she's still growing and then when she hits about 20 years old they will do the checks every 2 or 3 years.

Both of the girls reports are being sent back to Newcastle so they can double check. It's not that I don't trust the doctors in Scunthorpe but after the girls heart conditions were missed when they were born and for so long especially in Becky's life I am not taking any risks with them.

We were also told at both appointments that the girls should really refrain from getting their ears pierced and they shouldn't really get tattoos. As they have leaking valves they are more at risk if they get an infection. The infection would go straight to their heart and that isn't good with their dodgy valves. They are not thinking about getting tattoos at the moment but has really put Ellie off thinking about getting her ears pierced. Hooray! 

So we're back in 18 months with the girls and I get my heart check in the new year. Hopefully that will go well and then Becky & I can have our appointments on the same day. The only difference is that they want me to go to Hull for my first appointment instead of Scunthorpe. Eek! That will be an adventure.

Daniel’s Story - Alder Hey Children’s Charity!

*Disclosure - This is a paid post on behalf of Alder Hey*

My biggest fear is my children being unwell. We've been in that position before when it was discovered that both of my girls had heart defects and needed open heart surgery. Let me tell you it's no fun! We had the support of a great hospital but when I think of other children's hospitals Alder Hey always springs to mind. Every year Alder Hey cares for over 275,000 patients and their families including one special boy.

Daniel’s Story

For the first few years of Daniel Bell’s life, he was like any other toddler, full of energy, happy and full of life at home in Ormskirk, but doctors soon discovered Daniel had a brain tumour the size of a fist.

At aged three, mum Rosalind and dad Colin, had noticed a change in Daniel’s behaviour. He wasn’t the same happy go lucky toddler he used to be. Rosalind explains “His personality literally changed. He was grumpy had lots of tantrums, was sick and went back to sleeping in the day too, which was the total opposite of what he was previously.”

Thankfully Rosalind recognised some of the symptoms of a brain tumour. Daniel was taken to Ormskirk A&E who quickly realised the severity of the situation and Daniel diagnosed with a brain tumour.

Daniel was rushed straight to Alder Hey which is a centre of excellence for brain conditions. “It was like the bottom had fallen out of my world, our lives changed in a split second. We were told he needed to go to Alder Hey right away and we were blue-lighted to Liverpool,” says Rosalind.

Once at Alder Hey, Daniel was taken straight to theatre where Neurosurgeon Ms Sasha Burns drained fluid on his brain during a 3 hour life-saving operation and the next day Daniel’s tumour was removed during a 9 hour operation by Mr Conor Mallucci, who recently featured in BBC2 documentary Hospital.

“Mr Mallucci told us that Daniel had a cystic tumour which was the size of an adult’s fist and there was a possibility of Daniel losing motor and mobility skills as the result of the procedure,” explained Rosalind.

The operation was a success, helped by the use of Alder Hey’s 3-T MRI scanner, a pioneering scanner which allows surgeons to scan the brain in theatre. Alder Hey is the first hospital in Europe to have this kit, which was paid for by Alder Hey Children’s Charity.

“It was 6pm when we heard that Daniel was out of theatre. We were approaching HDU to see him when we heard Daniel shouting at the nurses. I have to admit it was the best sound ever,” said Rosalind. “Mr Mallucci said that the operation ‘went perfectly’ and that he had successfully managed to remove the whole of Daniel’s tumour. We spent 6 days on HDU to recover and then went to the neuro ward for a week. The nurses were incredible,” said Rosalind.

Rosalind said: “When we got the scans from Oncology which told us that no further treatment was needed it was an amazing relief. I cried a lot after that.”

Daniel is now a healthy and very active little boy and also a budding actor. “Daniel is really happy. He is a cheeky little kid and he loves being with his friends. He has performed in Little Shop of Horrors with his local Performing Arts Club and he loves to raise money for Alder Hey Children’s Charity.”

As a result of his fundraising, Daniel was named a Fundraising Ambassador for Alder Hey Children’s Charity, which made everyone in the Bell family very proud. “I was really emotional when they told us that Daniel was to be an ambassador for the charity. It is an honour and a privilege,” said Rosalind. “Alder Hey is such an inspirational place full of amazing people. The staff put the children first often at the expense of their own time. It is impossible to put into words how world class they are at what they do. We are fortunate to have them on our doorsteps.”

All of the Alder Hey Children’s Charity ambassadors help to raise money for the charity so that it can continue to provide vital funds to provide life-saving medical equipment and facilities that make a real difference to families every day.

Recently the charity installed distraction technology in many rooms to help divert attention away from the treatment or medical examinations that need to be carried out by medical staff, and to entertain young patients with colourful, bright and positive images projected on the walls. This immersive technology helps to transform a white walled room into a magical world where children can escape from reality and be free from fear and anxiety.

To be able to continue to provide innovative solutions such as the distraction technology and provide vital funds for Alder Hey, the charity relies on the support and kindness of the public. There are many fun and exciting ways for people to help and support Alder Hey Children’s Charity such as hosting a bake sale, a charity car wash or signing up to run a charity race. Alder Hey Children’s Charity has recently launched a brand-new running hub to inspire and motivate people to run for charity. With delicious recipe ideas, running tips and 5k, 10K, half marathon and marathon training guides, if you’d like to challenge yourself to run a 5K, 10K or even a marathon why not go and check out the Alder Hey Running Hub now.

This is a paid partnership on behalf of Alder Hey.