Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

You know you’re a heart mum when…..

This was a thread I found on the heartline message board.  There are now well over 250 entries on the list – some funny and some sad. Some I found very relevant!

1. …..the predictive text on your phone sails through “echocardiogram”, “cardiovascular”, “catheter”, “venous”, “mitral” etc….

2. …. You have cried more since having your heart child than you have in the whole of your life.

3..you realise the important things in life.

4…..your HH child presumes your heart child is going to have his heart fixed everytime you say that he has a dr/paed/cardiologist appt and wants to know how many days you will be gone

5…..The list of phone numbers on your mobile phone contain, Cardiac liason nurse, hospital ward, drs, chemist

 6…….Because there are times when you sit by their bed, watching them sleep with tears streaming down your face not knowing what the future holds

7……..When you seem to be the only person NOT complaining about the NHS.

8…….Targeted internet adverts are offering you very cheap cardiac invesitgations and aortic valve replacements

9…….Your 3 year old daughters favourite book of the moment is ‘Having a Cardiac Catheter’

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The smiley boy!

Samuel is a very happy and smiley baby expect when there’s a camera around!!

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The reason Eloise loves cooking

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Knitting

I am a fan of most crafty things. I mainly do sewing but have started knitting in the last 18 months. I started the bag above in January and finished it last night.  Sadly the photo doesn’t do it justice but I’m really pleased with it. I’m now being sad and knitting a coordinating brooch!

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The future

So that’s the story to date – congratulations if you’ve read it all! At the moment I’m not writing this with the purpose of it being read. Its more of a cathartic experience for me.  I also plan this will be a way of keeping people up to date in the future when/if necessary.

Long term Samuel needs more surgery.  Eventually he will need an aortic valve replacement as his valve won’t grow with him.  It will either become blocked or will become too leaky with back flow (he currently has a little of both). The doctors have explained that they want him to be as old as possible to do the surgery as it has less risks the older he is. At present that would mean open heart surgery but we have been told that as medicine advances that might not be the case when the time comes for Samuel.

A time frame on surgery is also not possible at the moment.  His last clinic letter was really positive and they feel he will get ‘good longevity’ from his valve. As an obsessive planner I really am struggling with the fact we have no idea when his operation will be.  The doctors have said it may be in the next year or he might be a teenager – we just don’t know. Part of me wishes we could get it over and done with but another part of me is petrified at the thought of putting him through such a massive operation. The replacement valve also has a lifespan (approx 20 years) so potentially he will need further replacements.  

Six weeks on from this Samuel is doing brilliantly. He’s putting on weight well and is very alert and happy. I’ve politely told my health visitor where to go as her input was anything but positive. I feel the dust is settling and I’m not sitting crying alone at night when I feed him.  I’ve also managed to stop worrying that I’m going to wake up and find him dead one morning. Very macabre but that’s how my mind has been working in the last few weeks. Perhaps the citalopram is doing its job!

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Oxford

So we arrived at Oxford very late. The place was huge, we didn’t have a clue where to park and then couldn’t find a door open to get into the hospital.  Luckily we found a few kind people who helped us out and took us to HDU.  Samuel was thankfully fine on the journey over and was stable when we got there.

We met his consultant who again explained the problem with his valve and told us that they would operate the next day to open the valve up using a cardiac catheter.  We were given a room for the night to try and get some rest but I found myself just laying in the dark for a few hours.  My main thought was that this was so surreal, not happening to me, that it had to be some weird dream and I was praying that I would wake up soon.  By 5.30am I was back downstairs with Samuel on HDU.

Thankfully my mum and uncle came to see us at the hospital that day.  I think we would have gone insane with the wait if we were on our own (either that or argued!) Samuel finally went to theatre just after lunch.  We were able to go into the room with him initally and told we could stay with him until he was under the anaesthetic.  I found this thought too upsetting and eventually had to leave the room as I was crying too much.

A couple of hours later he returned to HDU looking very well and alert.  The operation had successfully opened the valve without any complication and the difference in Samuel was instant.  Beforehand he had always been a very quiet and sleepy baby.  We felt he still hadn’t lost that newborn sleepiness or we just had a very good baby on our hands.  Since the surgery he is now bright, alert, happy and smiling – very rewarding after everything that happened.  He also cries alot more now but we find that reassuring!

That afternoon we both relaxed and felt like a huge weight had been lifted from our shoulders. I felt able to think a few days ahead rather than hours.  We also felt able to acknowledge that it was Christmas! We had been given a room in Ronald MacDonald House at the hospital and when we returned to our room a hamper of food had been left for us and the kitchen was full of plenty of Christmas treats to keep us going. Very simple things that meant alot to us at the time.

Samuel continued to make excellent progress and moved to the ward on Christmas Eve.  He was discharged home on Christmas Day. It was a relief to be home but sad as our daughter Eloise wasn’t with us – she was with Nanny and Grandad being spoilt so we were probably far from her mind!

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The trouble begins

So, it was the 22nd of December and Samuel had spent the night in hospital under observation for a chest infection. He still seemed the same to us so at no point were we particularly concerned about him.  On the morning ward round a doctor thought he heard a heart murmur.  They said nothing to worry about, quite common and they’d sort a scan out.  If they couldn’t get a scan done that day he would be discharged and have to return as an out patient for it.

That afternoon I went with Samuel for an echo cardiogram. Luckily a nurse from the ward also came with us.  The lady that did it sat in silence throughout.  When she finished she asked if he was on high dependency – no he wasn’t. She frowned. She then asked who the consultant on call was as she needed to ring them. She left the room and spent some time on the phone the other side of a closed door.  As a nurse it was apparent to me that some very serious was going on if she felt the need to urgently ring a consultant directly.  When she returned to the room she explained that Samuel had a problem with his aortic valve and that it wasn’t opening properly. She’d also asked someone to come to escort us back to the ward. Two doctors arrived, breathless and carrying an enormous red rucksack.  I knew this rucksack is there for the worse case scenario.  His condition was that bad that they felt it was unsafe for us to walk the 3 minutes downthecorridor to the ward without full back up.  I felt like the nightmare was beginning.  In the middle of this Samuel appears fine – totally ‘normal’ to me.

He was taken straight into HDU where several people started putting in lines, monitoring etc. Another consultant arrived who carried out another echo.  He again confirmed what had been found and explained that Samuel had critical aortic stenosis.  Blood was unable to flow out of his heart and around his body due to an abnormal valve.  He needed urgent surgery and that would mean being transferred to another hospital.  I went out to phone my mum to let her know what was happening. As a walked back into the room I realised the arrest trolley was open, the arrest drug box was open on his cot and there were about 10 people around Samuel.  I was hysterical and taken out of the room by the mother of the girl in the next bed.  Steven had just arrived back at the hospital at the same time and we were both put in a parents room for what felt like an eternity. At this point I thought he was dead.  Finally a doctor appeared and said he was veryunstable,they were working to stabilise him and that might mean putting him on a ventilator.

Finally we were allowed back into see him.  He’d stabilsed on CPAP so didn’t need to be ventilated at that point.  We were told that he would be taken to Oxford for surgery so waited for the ambulance to arrive to collect him.  The doctor that arrived went through many things with us.  I don’t remember much of the conversation really. I remember that I was crying too much to take it in. He did say that his condition was not great and there was a strong chance that he would not survive the journey to Oxford.  I also remember him saying something that left me thinking that we’d be lucky if he was still alive when he started school.  There was something about ‘this is the start of a journey and sadly we sometimes lose children along the way.’ An absolutely awful awful conversation.

We then had to get in the car and drive to Oxford. It was 10pm, lots of snow on the ground and freezing fog. I drove as slowly as I could just so we didn’t catch the ambulance up.  For some reason I just didn’t want to see it. I spent most the the drive wondering how on earth we were going to pay for his funeral.

http://www.patient.co.uk/health/Aortic-Stenosis.htm

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Samuel arrives

Right, where to start?  I’ve never done this before, not too sure why I am or where I’m going with it. I’m mortified at the thought of people reading this (again, why am I doing this?!) Anyway, it has been suggested to me that I might find it helpful to write things down so here we go.

At the end of November 2009 I gave birth to my second child, Samuel.  I already have a three year old daughter called Eloise.  Her birth had been a little traumatic so it was great to have a lovely, quick straightforward labour with Samuel.  Everything was great and we were settling in to having two children.

Samuel never fed well. He slept through most feeds and it took about an hour to get him to have a little bit of milk. He slept like a dream and was very quiet.  Eloise had also been like this so we thought we were lucky to have yet another very good baby.  The feeding problems bothered me though so when he was 2 weeks old I took him to see the health visitor for advice.  Within 2 minutes of me entering the room she told me I had an anxiety problem, was putting this onto Samuel and that I was creating the feeding problems myself.  I was very upset by this – I didn’t have an anxiety problem but did once I’d had that appointment with her!  I left determined to do my own thing and carry on without her so called ‘help’.

The feeding problems didn’t go away so two weeks later I went to baby clinic to have him weighed.  Whilst we were there the same health visitor said she didn’t like the sound of his breathing and told me to take him to the GP.  He’d made this noise since birth. No one had told me it wasn’t right.  He seemed the same to me so I wasn’t concerned.  The GP thought it was a chest infection and asked us to take him to the hospital for assessment. 

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