Think Heart

Next week is Children’s Heart Week and the Children’s Heart Federation are running a series of events to increase awareness of congenital heart defects.  They are also going to promote the ‘Think Heart’ campaign which encourages both parents and professionals to be more aware of the possibility of a congenital heart defect in the first weeks after birth. Roughly half the children born with a heart defect will be sent home without a diagnosis.

Think Heart provides an acronym to help raise awareness of the symptoms of an undignosed heart defect

Heart rate - too fast or slow? (normally 100 to 160 beats per minute)

Energy & Feeding - sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?

Arterial Saturation (oxygen levels) – not enough oxygen in the blood? (normal oxygen saturations 95-100%)
and Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour (not enough red blood)

Respiration - breathing too fast or slow? (normally 40-60 breaths per minute)

Temperature - cold to touch – particularly hands and feet?

More information at Tiny Tickers

In hindsight looking at the symptoms, Samuel was showing us that he was clearly having problems. I’d approached my health visitor on a number of occasions as I was concerned and each time was told that I had anxiety issues and was putting my problems onto my baby. I think had I known more about the symptoms of a heart defect I would have had the  courage to seek alternative help much sooner.  By the time he was diagnosed aged 4 weeks, he was in severe heart failure and had a cardiac arrest. We know that we are lucky that he arrested in hospital, had this happened at home it is likely that he would not have survived.  We are also lucky that Samuel has suffered no long term ill effects from that undiagnosed period.

This photo sums up our first 4 weeks with Samuel – constantly asleep…..

And immediately after his valvoplasty he was a totally different child….

On 14th May the Children’s Heart Federation is holding a workshop in London to discuss the Think Heart campaign and also the use of pulse oximetry testing at birth (something else I feel would have prevented us going through a lot of trauma).  Following that is a parliamentary reception to raise awareness amongst MPs of the importance of early diagnosis of heart defects.

I’m attending both and looking forward to a trip to London on my own! It’ll also be strange attending a healthcare meeting wearing my parent hat and not my continence manager one. I’m also looking forward to going inside the Houses of Parliament – my inner political geek is thrilled. Sadly though no photos can be taken inside – what happens if I bump into Andrew Marr or Nick Robinson?!

My main feeling with both Think Heart and pulse oximetry is that they are not rocket science. They are simple, cheap, accessible and effective ways of detecting heart defects at a crucial stage.  I strongly believe that both would have made a huge difference to Samuel’s condition. It would not have reduced the need for surgery but it would have saved us all the trauma of him being critically ill and coming so close to losing him.

Keeping the positive momentum going

Back to reality and back to work on Wednesday and so far so good.

I’ve tried really hard to keep positive and not get caught up and dragged down in others doom and gloom. I’m lucky that my secretary is on the same positivity drive and we have adopted the new office mantra of ‘What would the Dalai Lama do?’ to refocus ourselves on positive, calming thoughts (success of this varies!)

 

So the good things from the week -

Samuel is going to sleep much quicker. No protests or screaming tonight. He played in his room for a bit then put himself into bed after 20 minutes. He’s also sleeping until 7am most mornings. The sleep is making us both feel more human and better natured.

Today we received the clinic letter from Samuel’s last hospital appointment. We had been concerned about his breathing and he hasn’t been himself since October. His consultant feels that the breathing problems are not related to his heart and he probably is just suffering from repeated colds and chest infections. The letter explained that a chest xray shows resolving infection that doesn’t need further treatment. Cardiac wise he remains stable with no real change in his overall condition since his last review a year ago. He still has mild stenosis and regurgitation and some hypertrophy but this is as they had previously reported. He has another appointment in two months time but this is mainly to review his breathing and we were told that he would probably not have an echo then.

Had a really good day out of the office yesterday to concentrate on fellowship things. Have kept up with my journalling. I came to the conclusion that I have a real interest in coaching. I’d like coaching for myself to aid my development and to keep my motivation up. I also think it is a good way to help me deal with my team and help them to develop. I usually take on everyone else’s problems or queries at work and by adopting a coaching mentality I can reduce some of that workload for myself, delegate and aid staff development in the process – win win!

I spent yesterday searching for a coach and trying to find someone suitable. I have received money as part of the fellowship so had intended using this to pay for coaching. Today I had a conference call with the programme leader who has suggested she will contact our regional health authority as they will have coaches that they use and ask someone to contact me to arrange this. I will not have to pay for this meaning I can put more money into my service and team development.

Yesterday I also met with someone I had approached to be my mentor and clinical supervisor. I had sent a cheeky email asking for her to suggest potential mentors to me in the hope that she would offer to do it herself. The plan worked The meeting went well and I have really good feelings about it. We discussed many things and our opinions are the same on a number of key issues. She has given me things to work on and suggested further sources of help. I also discussed with her about a proposed restructure of our trust and that I feel this is a threat to our service. She explained it in a different way to how I had viewed it initially. With a different perspective I am now confident that we can use this proposal to our advantage and strengthen our role.

Operation Declutter continues at home. My shredder is still keeping pace. I’ve ordered the phone docking station and I’m longingly looking at the Ikea website for storage for my kitchen command centre. Today I introduced the 15 minute rule on my work desk (yes, I am just as bad at work). One drawer cleared. My filing cabinet will take a long long time to organise.

 

So a good week. I’m concentrating on my little goals and using small steps to work towards the bigger objectives. I need to keep focus on this as its working well. Any other suggestions on keeping a positive momentum will be gratefully received!

 

 

A good hospital letter!

We had to take Samuel to the hospital last month. It was his first appointment for six months and leading up to it I’d convinced myself he was deteriorating. His hands and feet had been a poor colour and he seemed to be struggling in the very cold weather.

The appointment went well. His cardiologist agreed that he appeared worse but reassured us that it wasn’t heart related and was most probably due to the continual cold he’s had all winter. There was a student present and the explanation was given that when Samuel was diagnosed he was in severe heart failure – this was giving greater concern than his aortic stenosis. It took six months but his cardiac function eventually returned to normal and at this latest appointment it was confirmed that it remains normal.

We received the copy of the GP letter today. I’m learning that sometimes you find out things not mentioned face to face but this one was very positive. The final paragraph has made me smile lots this evening –

Six months on

It’s been 6 months this week since Samuel’s aortic stenosis was diagnosed and he had his cardiac catheter. Thinking back to that week I really feel we’ve all come a long way and emerged the other side of the big scary cloud we were stuck under.

There was a time when I felt his heart defect heavily weighed on my mind and I never thought I would be able to ‘forget’ it and get on with my life. It was a very lonely time but I’m genuinely in a much happier place now. Samuel’s health is very good which has helped. The uncertainty of the future is still there but I can put it in perspective and its at the back of my mind. I know his valve replacement will be a difficult time for us but I am able to forget about that anxiety for now and will cross that bridge when we need to.

I’ve met many new people and been very thankful that the heart parent community on the internet is as strong and big as it is. Whatever the anxiety – however big or small – there has always been someone who has been through the same and can offer some help.

I’m now busy making plans for the future and feel clear about the direction I’m going in – and I will get there regardless of what Samuel’s aortic valve decides to throw at us!

A good good day :-)

Samuel had an appointment at the hospital today and they doctors were thrilled with him. His stenosis appears to have improved. They said this generally doesn’t happen so they’re confused by it but nonetheless happy. His cardiac function has also improved so it was gold stars all round. I was very pleased when they said they don’t want to see him again for 6 months. This added to my feeling that Samuel’s heart problem is becoming less of a feature in our lives and that we are now able to forget about it in general and get on with things. There was a time when I thought I would not be able to be this casual about it but he does seem really well at the moment so I’m grabbing the positivity and going with it.

I’m plugging away at my 101 list – getting there gradually. I’m trying to tell myself 1001 days is a long period of time so it’s not going to kill me if it takes me a couple of weeks to think of everything. I’m also thinking and planning for the things already on the list so it’s all progress.

Hospital Visit

Last Tuesday Samuel had a cardiac review in Northampton. It was the first time we’d been back there since he’d been transferred to Oxford on that awful day. It was amusing standing in the car park thinking last time we were here it was very late at night, snowing and Steven was having a huge shouting session being very angry with the world!

Cardiac wise all is good. His growth rates all remain above average. I explained that we’re still having feeding problems that I am convinced is reflux. His consultant said whilst he continues to gain weight well they are reluctant to add any medication to help. He admitted that even though its frustrating for us, we just have to persist with it. The reflux comes and goes but in general he screams through two feeds a day. We’ve tried colic remedies and these made no difference. A suggestion to help was to start weaning Samuel now. I was slightly freaked out about this but he’s 15 weeks old so I suppose it’s not too bad. I’ve tried a couple of times so far and it hasn’t been a raging success.

Eloise also had an echo whilst we were there. When Samuel was diagnosed they were very interested in our family history as this tends to run in families. We are not aware of anyone else having this. To be on the safe side we asked that Eloise have a scan to check her heart. Luckily, all is good and her heart is normal. She was also a star having the scan done – she relaxed after a little bt of persuasion and the promise of some chocolate buttons.

So we’re back to the hospital in two months for the next scan. I feel we escaped this time quite unscathed. Just the battle with baby rice to contend with now!