This blog started as a way of telling Emily's story; as the last post was about her 16th Heart Day I think it's an ideal time to move on.
I'll be blogging here from now on and leaving this one be. I'll update on any heart related news (hopefully that will be few and far between as no news is usually good news) but otherwise come see me on the other side.
If you happen across this blog in search of someone with ALCAPA then feel free to read Em's story from the start, see how far she's come and then leave a comment or mail me. I'm always happy to be in touch with other families.
Take care
Update#1 21 July 2010
Emily is officially a GUCH! (Grown-Up Congenital Heart)
She had her final appointment at the Children's hospital yesterday and has been handed over into the care of the Adult team at the QE. It's a huge milestone and I felt a tad emotional leaving the hospital for the last time; they've been a massive part of our lives. We have much to be grateful to the Children's hospital for; they pulled her back from the edge when she was diagnosed and she survived, unscathed against all the odds. Thank you Dr Wright, Mr Sethia, Mr Brawn and your wonderful, dedicated staff.
We lost our lovely lifelong cardiologist Dr Wright last year - he was tempted away by a new life in New Zealand (and who could blame him?) so were feeling a little cast adrift but now we can make a new start with a new team.
Change is the law of life. And those who look only to the past or present are certain to miss the future." -John F. Kennedy
Update#2 24 August 2010
Emily picked up her GCSE results today. A good crop of A* to Cs and I'm inordinately pleased. Her attendance at school hasn't been fantastic over the years but the girl came good!
And now it appears that I suddenly have no school-age children; just students who are a drain on my finances and test my sanity. Bless 'em!
Update#3 11 October 2010
Our first GUCH appointment today. We saw Dr Sara Thorne at Selly Oak hospital. She was lovely -not a bit like I expected. I'm not sure what I expected; maybe that she'd have two heads or something!? It was just a quick 'hello' visit really - Em has been booked in for a load of baseline tests which incudes the dreaded MRI. That was the only bit she was unhappy with. If all is well we can be seen by the same team but at the outreach clinic at our hospital. I'm happy with that especially as this trip it took us 2 hours 10 minutes to travel the 55 miles to the hospital; the M6 seemingly, as usual just like a very big car park!
Update#4 2 August 2011
Well - almost a whole year with no updates. How good is that!?
This Saturday (which is unusual in itself) Em has a Myocardial viability scan at the QE in Birmingham. The scan will show how damaged Emily's heart muscle is. Before she was diagnosed she had a couple of heart attacks and the lack of blood flow to the muscle means she has areas of damage. How well her heart functions, particularly under stress depends on the extent of the damage. Fingers crossed the news will be good. Stress test, ECHO and the usual MOT in another couple of weeks.
Showing posts with label ALCAPA. Show all posts
Showing posts with label ALCAPA. Show all posts
Sunday, 11 April 2010
Saturday, 24 October 2009
Not your average 16 year old
Emily is 16 today.
And she's not here - she's in Germany on a school History trip. Off they went at stupid o'clock this morning. I pity the staff I really do - just four of them here for a pizza party and the noise level was off the scale. If you flew Heathrow to Munich at around 7 am this morning I do apologise.
We didn't really get what it said on the tin when Emily arrived. For starters I thought she was going to be another boy, and she was supposed to be of average weight. She doesn't know the meaning of the word and weighed in from the off at just shy of 10lbs. And obviously she had some out of the ordinary plumbing and has developed an out of the ordinary attitude to life.
Happy Birthday Em. Enjoy. I know you will.
And she's not here - she's in Germany on a school History trip. Off they went at stupid o'clock this morning. I pity the staff I really do - just four of them here for a pizza party and the noise level was off the scale. If you flew Heathrow to Munich at around 7 am this morning I do apologise.
We didn't really get what it said on the tin when Emily arrived. For starters I thought she was going to be another boy, and she was supposed to be of average weight. She doesn't know the meaning of the word and weighed in from the off at just shy of 10lbs. And obviously she had some out of the ordinary plumbing and has developed an out of the ordinary attitude to life.
Happy Birthday Em. Enjoy. I know you will.
Saturday, 26 September 2009
This week's news
We had a trip to cardiology this week (following our cancellation a short time ago) - and all is well. Actually, all is the same which is still good news. Emily has to go back in a couple of weeks for a treadmill test to measure her exercise tolerance (or lack of). This will be interesting. As is the way with many teenage girls, exercise is not very de riguer and she doesn't find getting redfaced and sweaty very appealling. Watch this space!
Another piece of news this week is that the DWP with their usual predictability have turned down our renewal request. I find it a little disconcerting that the same claim that produced an award last time is unsuccessful this time. I wouldn't mind so much if they were bloody consistent.
No2 son (and the no2 only describes the order in which they arrived, I must make this clear) is off to uni tomorrow. Sob. On the plus side my recycling bin will not be full of beer cans and the phone bill might be a little less. Every cloud and all that.
Another piece of news this week is that the DWP with their usual predictability have turned down our renewal request. I find it a little disconcerting that the same claim that produced an award last time is unsuccessful this time. I wouldn't mind so much if they were bloody consistent.
No2 son (and the no2 only describes the order in which they arrived, I must make this clear) is off to uni tomorrow. Sob. On the plus side my recycling bin will not be full of beer cans and the phone bill might be a little less. Every cloud and all that.
Friday, 4 September 2009
PAT has gone...
But in the worst possible way; the appointment was cancelled. This is most frustrating. Note that I'm being incredibly polite here and respecting that I may have sensitive readers who don't wish to read my effing and jeffing. It means that PAT hasn't truly gone and is just lurking in the corner ready to pounce.
I will Keep Calm and Carry On.
I will Keep Calm and Carry On.
Friday, 28 August 2009
I have a visitor. PAT is here.
PAT has arrived and is an unwelcome visitor. She came a little later this time as I've been busy and my head has been elsewhere, but she's here all the same.
PAT - Pre appoinment tension (this is an abridged version with all credit given to the lovely Sheran at Heartline)
PAT is a chronic condition suffered by parents with sick children. The symptoms of which are mild until the arrival of the brown envelope where by they become ever more acute leading up to the appointment day.
The arrival of the envelope and date is sometimes accompanied by the very early stages of the acute condition. Trembling hands, moist eyes, butterflies in tummies, feelings of both regret and sadness are common. As is an overwhelming physical urge to burn the blooming thing and run away with the child in question. Sensible sufferers can now go on the internet and book train tickets. The additional cost of transport can sometimes cause an additional strain on sufferers of PAT.
Shortly after the arrival of the envelope sufferers often report an increase in symptoms in their child. Common symptoms in CHD children include blueness, breathlessness and fatigue all of which increase in the weeks leading to the appointment.
It is not uncommon in sufferers whose children have the additional diagnosis of failure to thrive to start force feeding their children with a diet higher in fat, chocolate and rolo yoghurts. As panic sets in the childs consumption of double cream increases proportionately and can sometimes double. Older children may complain but can normally be bribed by playstation games. Do not forget to hide the dance mat and any favourite fruits! PAT sufferers are encouraged not to tell their partners the full cost of the shopping bill during these weeks.
PAT affects parents in different ways – a fortnight before the appointment (or as soon as the symptoms in your child are highlighted) it is not unheard of for parents to change. Appetites can increase (in the form of comfort eating) or decrease but rarely stay the same. Relationships are sometimes strained especially if one parent is more laid back that the other.
It is not uncommon for the slightest thing to cause major family rows especially if his friends or family insist that everything will be OK at the appointment. Things not to say to PAT sufferers include ‘it’s a miracle what they can do these days’ and ‘I don’t know how you cope’.
Other strange behaviour include poor sleep, lack of desire (female PAT sufferers often go through a stage of being petrified of getting pregnant), nightmares of the time your child was in hospital – or most commonly a fear that your childs symptoms have now developed at such an alarming rate you really should have booked a single train ticket to the hospital and will be packing an overnight bag.
Posting on Heartline is a great idea. As anxiety builds so does the consumption of chocolate, wine and cigarettes (if smoked). All of which leads to increased despair.
Once the aforementioned bag is packed expect to be up all night feeling like a condemned person. Your child will be so poorly by this time you will be up checking them every hour anyway!
The morning of the appointment!
Early morning appointments mean up at the crack of dawn – this is fun when you have had no sleep. Other sufferers recommend a cup of strong tea, two paracetamol and a shower in something zingy this seems to work well. As does the wearing of lucky clothing – top, pants, jewellery.
Wake the child up but do not expect it to eat. Feeding a pre appointment child at 5am together with its meds will lead to it throwing up at 8am in the middle of a packed commuter train (hence packing sanitary protection even if not normally required)! Far better to take some bread for them to eat later.
It is acceptable to put little ones in their hospital top the night before – you will be stressed enough without them being!
It is not uncommon to feel sick, nauseous or have an upset stomach the morning of appointment. Feelings of despair and great sadness are normal as are the ‘why the hell did this happen to ________’s/. Some suffers in advanced stages can suffer from shakes and numbness.
One thing that female sufferers should not do is wear make up. Because if the news is good at the appointment PAT makes you inappropriately friendly to medical staff (kissing and hugging can happen). I also recommend a very good deodorant as stress and hospitals can make you very hot and sweaty.
Post-appointment it doesn’t matter how it goes there will be tears – perhaps elation – but expect the next few days to be rough. You have been reminded that there is something wrong with your child and they will be getting away with murder. Travelling to the appointment is tiring for your child and they will be lethargic afterwards – this increase in fatigue will automatically be put down to whether it is their heart.
Once the clinic letter has arrived (which hopefully you can decipher) the symptoms of PAT gradually return from the acute to the chronic. This is normally about the same child as your child steps a bit too far over the line and you start telling them off again!
Until the next time...
PAT - Pre appoinment tension (this is an abridged version with all credit given to the lovely Sheran at Heartline)
PAT is a chronic condition suffered by parents with sick children. The symptoms of which are mild until the arrival of the brown envelope where by they become ever more acute leading up to the appointment day.
The arrival of the envelope and date is sometimes accompanied by the very early stages of the acute condition. Trembling hands, moist eyes, butterflies in tummies, feelings of both regret and sadness are common. As is an overwhelming physical urge to burn the blooming thing and run away with the child in question. Sensible sufferers can now go on the internet and book train tickets. The additional cost of transport can sometimes cause an additional strain on sufferers of PAT.
Shortly after the arrival of the envelope sufferers often report an increase in symptoms in their child. Common symptoms in CHD children include blueness, breathlessness and fatigue all of which increase in the weeks leading to the appointment.
It is not uncommon in sufferers whose children have the additional diagnosis of failure to thrive to start force feeding their children with a diet higher in fat, chocolate and rolo yoghurts. As panic sets in the childs consumption of double cream increases proportionately and can sometimes double. Older children may complain but can normally be bribed by playstation games. Do not forget to hide the dance mat and any favourite fruits! PAT sufferers are encouraged not to tell their partners the full cost of the shopping bill during these weeks.
PAT affects parents in different ways – a fortnight before the appointment (or as soon as the symptoms in your child are highlighted) it is not unheard of for parents to change. Appetites can increase (in the form of comfort eating) or decrease but rarely stay the same. Relationships are sometimes strained especially if one parent is more laid back that the other.
It is not uncommon for the slightest thing to cause major family rows especially if his friends or family insist that everything will be OK at the appointment. Things not to say to PAT sufferers include ‘it’s a miracle what they can do these days’ and ‘I don’t know how you cope’.
Other strange behaviour include poor sleep, lack of desire (female PAT sufferers often go through a stage of being petrified of getting pregnant), nightmares of the time your child was in hospital – or most commonly a fear that your childs symptoms have now developed at such an alarming rate you really should have booked a single train ticket to the hospital and will be packing an overnight bag.
Posting on Heartline is a great idea. As anxiety builds so does the consumption of chocolate, wine and cigarettes (if smoked). All of which leads to increased despair.
Once the aforementioned bag is packed expect to be up all night feeling like a condemned person. Your child will be so poorly by this time you will be up checking them every hour anyway!
The morning of the appointment!
Early morning appointments mean up at the crack of dawn – this is fun when you have had no sleep. Other sufferers recommend a cup of strong tea, two paracetamol and a shower in something zingy this seems to work well. As does the wearing of lucky clothing – top, pants, jewellery.
Wake the child up but do not expect it to eat. Feeding a pre appointment child at 5am together with its meds will lead to it throwing up at 8am in the middle of a packed commuter train (hence packing sanitary protection even if not normally required)! Far better to take some bread for them to eat later.
It is acceptable to put little ones in their hospital top the night before – you will be stressed enough without them being!
It is not uncommon to feel sick, nauseous or have an upset stomach the morning of appointment. Feelings of despair and great sadness are normal as are the ‘why the hell did this happen to ________’s/. Some suffers in advanced stages can suffer from shakes and numbness.
One thing that female sufferers should not do is wear make up. Because if the news is good at the appointment PAT makes you inappropriately friendly to medical staff (kissing and hugging can happen). I also recommend a very good deodorant as stress and hospitals can make you very hot and sweaty.
Post-appointment it doesn’t matter how it goes there will be tears – perhaps elation – but expect the next few days to be rough. You have been reminded that there is something wrong with your child and they will be getting away with murder. Travelling to the appointment is tiring for your child and they will be lethargic afterwards – this increase in fatigue will automatically be put down to whether it is their heart.
Once the clinic letter has arrived (which hopefully you can decipher) the symptoms of PAT gradually return from the acute to the chronic. This is normally about the same child as your child steps a bit too far over the line and you start telling them off again!
Until the next time...
Friday, 21 August 2009
Good news.
My middle child (not so much of a child now) picked up his A level results yesterday. He got his grades and is off to Uni in September. Watch out Lancaster!
And Emily is back from Portugal, having had a fabulous time. I'm awaiting photos but I think she's vetting them first!
And Emily is back from Portugal, having had a fabulous time. I'm awaiting photos but I think she's vetting them first!
Wednesday, 12 August 2009
Children's Heart Federation - Project Portugal
Well, we've left Emily at Gatwick Airport in the care of the Children's Heart Federation - she's jetting off to Portugal with them as part of their Teen Forum Activity weekend. I was surprised to observe that her's wasn't the biggest suitcase on the trolley. She must have cut back on the number of pairs of shoes she intended to take.
They will be updating their Facebook page so feel free to check it out.
Children's Heart Federation on Facebook
As I have the laptop to myself for a few days I might be able to upload some more holiday photos shortly.
Edit :- I have just realised (whilst wandering the aisles in Sainsbury's) that I didn't tell Em that she'd need a travel adapter for her hairdryer and straighteners. I will be in Big Trouble if she's been unable to borrow one and her hair is like a bird's nest!
They will be updating their Facebook page so feel free to check it out.
Children's Heart Federation on Facebook
As I have the laptop to myself for a few days I might be able to upload some more holiday photos shortly.
Edit :- I have just realised (whilst wandering the aisles in Sainsbury's) that I didn't tell Em that she'd need a travel adapter for her hairdryer and straighteners. I will be in Big Trouble if she's been unable to borrow one and her hair is like a bird's nest!
Monday, 10 August 2009
The Walker with Heart
He's here on The Plinth raising awareness of Congenital Heart Disease and adding to his walking total.
WELL DONE PAUL! YOU'RE A STAR!
Paul Willgoss - The Walker with Heart
WELL DONE PAUL! YOU'RE A STAR!
Paul Willgoss - The Walker with Heart
Saturday, 8 August 2009
Back from holiday. Otherwise entitled 'What is that strange brown stuff on the living room ceiling and how did it get there?'
Yes, there are many similar questions which I suspect will go unanswered, for example....
How do you fill a 240 litre recycling bin, 4 carrier bags and a crisp box with beer cans in 10 days?
At what point does a 'small gathering' become a party?
Whose is the loose change I found in my bed and where is my extra pillow?
Why is there egg (hopefully it's egg) on my kitchen ceiling and what appears to be red wine in my tea caddy?
Who is the owner of the Nicorette gum in the bathroom cabinet?
And has there been an experiment to see how long it takes for the scraps in the windowsill recycling box to turn into penicillin?
On the upside, my lovely neighbours appear to have no complaints, the police weren't called and the house hasn't burned down. I'm grateful for small mercies but do appear to have been lax in teaching the boys the finer points of cleaning. This must be addressed.
As memories of a relaxing holiday appear to have been rudely ushered out of my mind and time short, here it is in pictures;
We went to the seaside
How do you fill a 240 litre recycling bin, 4 carrier bags and a crisp box with beer cans in 10 days?
At what point does a 'small gathering' become a party?
Whose is the loose change I found in my bed and where is my extra pillow?
Why is there egg (hopefully it's egg) on my kitchen ceiling and what appears to be red wine in my tea caddy?
Who is the owner of the Nicorette gum in the bathroom cabinet?
And has there been an experiment to see how long it takes for the scraps in the windowsill recycling box to turn into penicillin?
On the upside, my lovely neighbours appear to have no complaints, the police weren't called and the house hasn't burned down. I'm grateful for small mercies but do appear to have been lax in teaching the boys the finer points of cleaning. This must be addressed.
As memories of a relaxing holiday appear to have been rudely ushered out of my mind and time short, here it is in pictures;
We went to the seaside
The weather was unpredictable but we managed to sunbathe, go on the water and in the water and have some laughs.
We ate fish and chips and drank much wine (although it seems not as much as the boys).
This is Fred. He liked fish and chips too.
Hmm where did Fred's photo go? You're intrigued now aren't you?
More to come but I'm drowning in washing, the holiday stuff, plus what I left in the basket before I went, plus a large pile of ironing the boys haven't done. I'm ignoring that one. Still, they did wash and they didn't flood the house.
Wednesday, 8 July 2009
Still busy...
Work is a bit full on at the moment - it's the end of term and whilst the rest of school are winding down the admin side cranks up a notch or two. It's great though, I like being busy and I have seven weeks holiday to look forward to.
Emily will be well travelled this summer - she's just got back from her Geography field trip, we have two weeks in Devon booked and then she goes from there pretty much straight to Portugal. In the Autumn she's off to Berlin with her school history group. The Portugal trip was a bit of a surprise. She applied to be part of the Children's Heart Federation Teen Forum - got accepted and the first thing they're doing is a team building jolly in the sunshine. I expect there'll be photos later. I notice that the blogged photos have been rather thin on the ground lately so I'll try to rectify that soonish.
Running is going well - two good runs last week, one of them in blazing sunshine resulting in one side of my face being browner than the other!
Emily will be well travelled this summer - she's just got back from her Geography field trip, we have two weeks in Devon booked and then she goes from there pretty much straight to Portugal. In the Autumn she's off to Berlin with her school history group. The Portugal trip was a bit of a surprise. She applied to be part of the Children's Heart Federation Teen Forum - got accepted and the first thing they're doing is a team building jolly in the sunshine. I expect there'll be photos later. I notice that the blogged photos have been rather thin on the ground lately so I'll try to rectify that soonish.
Running is going well - two good runs last week, one of them in blazing sunshine resulting in one side of my face being browner than the other!
Saturday, 6 June 2009
Sunday, 31 May 2009
Lovely weather we're having....
Sorry for the absence; it's been too nice to be tied to the laptop and also we've been away for a few days. We took Em to London. She loved it, felt very 'at home' and fancys going to Art College there. It looks like I'll have to start saving my pennies. More photos later.
Thursday, 19 March 2009
I love coming home.....
The cardiac catheter went ahead as planned on Tuesday and we're now back home. Hurray!
The upshot of the test showed that the pressures in Emily's right ventricle we're way too high because of the narrowed pulmonary artery. The possibility of this had been discussed previously so the consultant went ahead and did a balloon dilation of the artery to stretch the narrowing and hopefully relieve some of the pressure. He was succesful and we will have to go back on a few months to check that the artery has remained stretched. Fingers crossed. In the meantime it will mean her heart is working less hard and she'll maybe have a bit more energy. More good news is that her coronary artery tunnel has excellent flow. Emily's left coronary is made up of pulmonary tissue and passes through her pulmonary artery which makes the balloon dilation more complex, as it wouldn't be good to cause it any injury.
We had our own room on the ward which was fab as it was busy and very noisy with lots of babies and toddlers making themselves heard. Not good when mixed with a fragile and slightly anxious teenager. As usual the staff were lovely and were very careful to maintain a degree of privacy for Emily. We also had a chat about making the transition to adult services which I think we're both feeling a little happier about now.
Best be off - she wants egg on toast!
The upshot of the test showed that the pressures in Emily's right ventricle we're way too high because of the narrowed pulmonary artery. The possibility of this had been discussed previously so the consultant went ahead and did a balloon dilation of the artery to stretch the narrowing and hopefully relieve some of the pressure. He was succesful and we will have to go back on a few months to check that the artery has remained stretched. Fingers crossed. In the meantime it will mean her heart is working less hard and she'll maybe have a bit more energy. More good news is that her coronary artery tunnel has excellent flow. Emily's left coronary is made up of pulmonary tissue and passes through her pulmonary artery which makes the balloon dilation more complex, as it wouldn't be good to cause it any injury.
We had our own room on the ward which was fab as it was busy and very noisy with lots of babies and toddlers making themselves heard. Not good when mixed with a fragile and slightly anxious teenager. As usual the staff were lovely and were very careful to maintain a degree of privacy for Emily. We also had a chat about making the transition to adult services which I think we're both feeling a little happier about now.
Best be off - she wants egg on toast!
Wednesday, 4 February 2009
Happy Heart Day.
Today is the 15th anniversary of Emily's diagnosis and heart surgery. But I'm not going to look back today - I'm looking forward and feeling proud of how she's turned out, how hard she works and the person she is.
Tuesday, 4 November 2008
The appointment.
The results of the MRI were inconclusive.
This is more than a little disappointing as it means that Emily has to have a cardiac catheter to clarify what's going on. This issue is with her pulmonary artery which is narrowed where the left coronary passes through it. On echo the pressures are high, the stenosis is graded as severe and would normally require surgery before causing permanent damage to the overworked ventricle. That said, past catheters have shown that the area is difficult to measure on echo and measurements taken once inside have been more acceptable. Just hoping that this is the case now and the cath will just show that ongoing monitoring is required rather than intervention.
I'm trying to be hopeful but my pessimistic side is currently winning the battle going on in my head.
This is more than a little disappointing as it means that Emily has to have a cardiac catheter to clarify what's going on. This issue is with her pulmonary artery which is narrowed where the left coronary passes through it. On echo the pressures are high, the stenosis is graded as severe and would normally require surgery before causing permanent damage to the overworked ventricle. That said, past catheters have shown that the area is difficult to measure on echo and measurements taken once inside have been more acceptable. Just hoping that this is the case now and the cath will just show that ongoing monitoring is required rather than intervention.
I'm trying to be hopeful but my pessimistic side is currently winning the battle going on in my head.
Friday, 16 May 2008
Escape from PICU
Finally we made it to the ward. Not far physically - PBG ward which was right next door to ICU in the old Children's Hospital - but it was a massive step forward and I did finally start to relax a little and believe that I would bring her home eventually.
I'm not sure that anyone would be interested in a blow-by-blow account of the next few months. We continued to have some bad days but they were more than outweighed by the good. Emily had had no proper nutrition during her time in ICU - only maintenance fluids as she couldn't seem to tolerate even the tiniest amount of feed. There was a short foray into TPN but that was discontinued when there was a concern about infection. So she left ICU at barely over her birth weight despite now being around 20 weeks old. She looks so skinny in this picture with Josh. Look at her stick legs! And the bald patch on the side of her head where she had a line in after all her other veins gave up the ghost.
Feeding, putting some weight on, and sorting out her long-term drugs were the next goals. She was still in quite severe heart failure and this was likely to continue for some months at least, still couldn't suck so all her feeds went down the tube and we gradually increased from 10ml an hour to something more reasonable. The feed had so many additives to increase the calories that it was as thick as custard and couldn't be gravity fed. It had to be pumped or syringed via the tube. We were patient though and she gradually gained a little weight.
Wednesday, 19 March 2008
4 February 1994 - The bad news
Again she quickly went down bank and after a couple of days, back I went to the consultant’s clinic where another doctor said he thought she had RSV. He watched her feed and said if she was worse the next day to come back. We got in the car and she was promptly sick again and I burst into tears. She was about 14 weeks old by now.
The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. The cardiologist thinks she’d had a heart attack during the night. We rushed her back to the ward where they put her on a SATs monitor and did some tests for RSV. The nurse commented that the SAT’s machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (& that couldn’t be right ??). We went for a chest x-ray and when we got back they put her on another monitor. Within 10 minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her HR was still 200. The paed came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back, he was on the phone. The ambulance had arrived to take her so he had to go and he said he would ring me. We were told that she’d be coming straight back and the ambulance would wait.
I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don't regret it because he wasn't up to the job - he was and is more than up to the job. It's just that I wasn't there for him or for Emily at possibly the worst moment......
Well when he got to BCH it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.
Gary doesn't speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadul call to make as well as to receive.
You can imagine how I felt; they were 50 miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She'd gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomalous Left Coronary Artery from Pulmonary Artery ALCAPA and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.
The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. The cardiologist thinks she’d had a heart attack during the night. We rushed her back to the ward where they put her on a SATs monitor and did some tests for RSV. The nurse commented that the SAT’s machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (& that couldn’t be right ??). We went for a chest x-ray and when we got back they put her on another monitor. Within 10 minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her HR was still 200. The paed came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back, he was on the phone. The ambulance had arrived to take her so he had to go and he said he would ring me. We were told that she’d be coming straight back and the ambulance would wait.
I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don't regret it because he wasn't up to the job - he was and is more than up to the job. It's just that I wasn't there for him or for Emily at possibly the worst moment......
Well when he got to BCH it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.
Gary doesn't speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadul call to make as well as to receive.
You can imagine how I felt; they were 50 miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She'd gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomalous Left Coronary Artery from Pulmonary Artery ALCAPA and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.
Saturday, 15 March 2008
And so it began......
Everything was fine until, at about 6 weeks her slow weight gain became non-existent and the HV asked me to wake her and feed more often. Despite this she began to lose weight and I changed to mixed breast/bottle feeding to see if it helped. All that did was prove just how little she took and within a few days she began to vomit back most of that. At about the same time she also began to get breathless and sweaty at feeds. My HV wasn’t happy and at the next baby clinic we saw the paed who did a monthly clinic. She did a full exam and took some bloods. A few days later she rang me at home with the results (why didn’t alarm bells ring at this point?) and asked me to take Emily to the GP and give him the results. Our GP didn’t seem concerned at all but at my insistence referred her to our local children’s ward.
24 October 1993 The New Arrival
Emily presented herself happy and healthy (?) on 24.10.1993. She was a few days late, labour was very fast, her heart rate dipped at one point and they panicked a little about getting her delivered immediately but it was otherwise uneventful. She weighed in at almost 10lbs and when we took her home we congratulated ourselves on what a contented child she was. She slept all the time and had to be woken to feed; with two boisterous brothers already at home she fitted right in.
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