Today was the day of Toms annual cardiac check up.  Little Man, due to his Noonan Syndrome, has a congenital heart defect.  Had a congenital heart defect.  It’s a funny world, this world of modern medicine.  At birth, his heart sounded quite the way it should.  A few weeks later, this was no longer the case… lots of unpleasant sounds were coming through the doctors’ stethoscopes, resulting in quite disturbing faces on said doctors.

In 2004, the doctors confidently went in through his arteries (starting in his groin), fairly sure that they could open up that pesky pulmonary valve using a clever little balloon.  They had not counted on the stubborn plasticity of this valve, which stretched for about an hour, then returned to its former, more comfortable squashed self.  All of which would have been fine if only it was letting the blood through!!  It was not a wasted endeavour, however, because it allowed the surgeons an opportunity to “see” the heart of the problem (see what I did there, with the punning?!).  Not only was Little Man’s pulmonary valve far too narrow (stenosed), but the whole area around the valve was much too small.

Two years later, in 2006, everyone was ready to go in and fix this pesky valve.  Open heart surgery is a scary thing.  We were incredibly lucky to go through it with a two year old.  I know that Tom will have to endure this again in the future sometime, and I am not looking forward to helping him handle the anxiety of what is quite major surgery.  A two year old simply takes things as they come.  Signing consent is something that is worthy of a post in and of itself (note to self… write about consent).

As it was, Little Man made open heart surgery look simple.  We were out of hospital 3 days after booking in.  Minus a pulmonary valve, and with a widened tract thanks to a bovine annular patch!

Since then, we see the cardiologist yearly.  I’m pleased to say that a thorough echocardiogram today showed almost no change since last year.  A very boring result, which is marvellous!  Tom was wonderful, lying very patiently while Senetta poked him in the chest, sometimes quite hard to get a good picture.  I had my first good appointment with a registrar, and have nothing but praise for Dr Henning Clausen… thank you good doctor for listening.

Next appointment is next year…  Hopefully by then we will have a happier overall picture, but it is rather lovely to know that “my heart is really good”, to quote Little Man as he gave the news to his Daddy on the way home.

Today was a day of hearts differently too.  The thing is, that Great Ormond Street Hospital is familiar to us because Little Man sees so many specialists there.  But unlike for other families, it is not a place we live.  Yes, we have had a few inpatient stays there, but never for more than a few days at a time.  Some families spend weeks and months there.  I’m not sure how the mums and dads manage, other than to know that when there is no choice, we rise to the occasion.

I know the exhaustion of spending hours and days sat in a chair by the bedside of a child who is ill.  I know the brain numbing experience of hours and hours of the Disney Channel.  I know the desperation of never feeling really clean.  Quick showers with a limited change of clothes is no substitute for home washing!  I know the sag of shoulders that accompanies that mediocre cup of tea made in stolen minutes in the parent kitchen.  I know the endless waiting for nurses, doctors, medication, decisions.  I do not know the impact of this life over more than a few days, but I do know that as much as the children struggle and suffer, the parents do so in equal measure.  Not to mention that horrific adult component that adds knowledge of the big picture, and parental instinct that makes you ache each time your little one winces.

So… at the end of last week I put out a little post on my Facebook page:  “All GOSH peeps, I’m coming up!  Who needs a hug?  A coffee?  Anything else?  Care packages can come your way!”.

I was so pleased that two mums were able to respond, and Little Man and I duly made our way first to the bone marrow transplant ward to visit Eric’s mum.  Her little boy is battling the same leukaemia that hit our Little Man, Juvenile Myelomonocytic Leukaemia.  A real nasty.  And Eric is just about to undergo his second bone marrow transplant in a bid to cure him.  His beautiful Mama has another little boy, only five years old so she is juggling an impossible situation.  What can I offer?  Very, very little.  A hug, an easy “hello, I know you, but how good it is to feel you, to see you, to hear you”, a coffee brought from the local starbucks, and a mini care package.  I had found some sweet packs including a shower gel, body lotion and lip gloss, all shimmering!  A body scrub to top it off and some dry shampoo for an emergency pick me up…  And unfortunately, the coffee is transient, so I added a mug and some sachets of that substitute of Starbucks, Via!  I have it on good authority of another bone marrow transplant Momma that it’s not bad at all!!

We only had a few minutes together, but I hope that she got  just a little boost today… just enough to get her through the next few minutes of an endless day!

My other wonderful friend was simply too exhausted to meet me.  I am so so pleased that she texted me to let me know she couldn’t!  She’d had a day of team meetings with doctors, nurses etc etc, in the unbelievably complicated care of her little girl.  I didn’t need to see her, I just wanted to offer my heart, a break if that’s what she needed.  And actually, it wasn’t what she needed.  She needed to spend time with her girl!  So Little Man and I popped to the door of the ward long enough to catch a nurse and hand over our care package.

Sometimes, I hope what’s needed is for a friend to offer a visit, but be equally happy to bow away if the time is not right.  So that is what my heart gave to Mama S.

All you Mamas in hospital, I send my love to you, courage in droves, hugs and the encouragement to  allow you to say:  Today, THIS is what I need.

Today, it’s all about the heart.

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