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teddyhasaspecialheart

~ My Little Boy's Fontan Journey

teddyhasaspecialheart

Tag Archives: HLHS

Ladybugs

22 Wednesday Apr 2015

Posted by carolyngalvin in Uncategorized

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cake, catering for kids, endocarditis, ENT surgery, HLHS, kids party food, ladybugs, teddy bear picnic, tonsils

 

Just as I was settling the boys down for a lunch time nap today there was a knock at the door. A surprise delivery from Anya one of the kindest, most talented caterers in Sydney.

I learnt by the time Tabitha was five that catering my kids’ parties myself was not one of my strengths. I was thrilled to find Anya from Catering for Kids because not only is she a genius at bringing children’s party dreams to life she is also exceptionally lovely!

Well it turns out that Anya has been following my blog and today she brought me this stunning ladybug cake with a heartfelt note saying our family is in her thoughts and here is a hug from a ladybug! Could she be any lovelier?!


It is fitting then, that we have had this ladybug sighting since it is believed that it symbolises healing and I’m really hoping it means the sickly ones in my house  will be feeling 100% better soon. How adorable is this cake? Who dares eat such a beauty?!


Below are some beautiful shots taken by Cherelle Martin at Teddy’s second birthday where Anya created the most delicious spread for our teddy bears picnic party. 

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Today I can report that Teddy’s temperature has come down again which is a huge relief. Unfortunately his tonsils remain a pair of revolting red and white spotted golf balls. We are praying for a good improvement by tomorrow or we will have to submit him for some more invasive testing and treatment. It is beginning to look more and more likely that this poor fellow will need to have the tonsils out this year as tonsillitis has plagued him for a few years now and the risk of endocarditis is pretty scary… Although the possibility of another operation is also pretty awful for the poor babe.

Hopefully I will have great news of a recovery to report tomorrow. Ted is so sad he has missed preschool, we hope he can return next week. It has been so long.


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Ted needs your blood!

24 Tuesday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 4 Comments

Tags

blood, blood bank, bypass, CHD, child surgery, donate life, Fontan, give blood, HLHS, Open Heart Surgery, operating room, red cross, transfusion

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So many wonderful people have asked how they can help Ted and our family. We are so grateful for the meals some of our kind friends are making as it is so so so helpful! Another way to help is to donate blood.

It is really easy to go to your nearest Red Cross Blood Bank. It doesn’t take long.

Every time Ted has open heart surgery it is necessary for the surgeon to stop his heart. He is then hooked up to an amazing  heart-lung machine (cardiopulmonary bypass) that then takes over the job of his heart, lungs and kidneys for the duration of the surgery.

The operating room will be packed full of people tomorrow including a team of perfusionists who operate the bypass machine aided by loads and loads of donor blood. So if you are able to spare a bit then please save a life or two.

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Two sleeps

23 Monday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 11 Comments

Tags

anticipation, CHD, Children's Hospital Westmead, chronic illness, Fontan, HLHS, Open Heart Surgery, staph, surgery

“Two more sleeps til my operation, I’m scared I might die.”

Ted’s words today came at me like a very sharp kick in the guts.

There is no terror in the bang, only in the anticipation of it.

Alfred Hitchcock

Anticipation is indeed something that can terrorise even the littlest of people.  Knowing Ted, this is why I chose only to drip feed tiny bits of information to him about his operation. I don’t know how he made the correlation between his surgery and the very real risk of death but he did. And it was a very sad thing to hear.

We are doing our best to put his mind at ease, all the while hiding our own very real fears. This is a challenge in itself. One of the hardest things on the day of surgery is making the very long drive out to Westmead pretending to be chipper for Ted’s sake but feeling the dread building with every kilometre. Such a hellish drive. Then the long walk to the anaesthetic bay, that’s another journey we try to make fun for Ted while fighting back massive sobs.

Today and tomorrow we have to wash Ted in this weird pre-op stuff that smells like flea shampoo (he is Staph A positive) but it has the added bonus of giving him cute hair: 

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Rich and I will spend the day with Ted tomorrow being an only child for a day, doing fun things ahead of Wednesday. Wednesday won’t be fun. Today after dropping Tabitha at school at 8 o’clock in the morning I let Ted have this green frog cake full of sugar and rubbish. Just because.

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Today we won!

13 Friday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 6 Comments

Tags

CHD, Children's Hospital Westmead, HLHS, needle phobia, play therapy, pre-admission clinic, public hospital, surgery

Ted and I left home before 8 o clock this morning and we got home late in the afternoon. It was a very long day for Ted but from start to finish he was the bravest of the brave. I never expected our day to run so smoothly.

As I mentioned yesterday, my relationship with the hospital is one of love and hate. I love our team of amazing specialists, the doctors and nurses who are our heroes at The Heart Centre for Children but I absolutely hate the bureaucracy of the public system.

While we are private patients in a public hospital this means nothing other than for billing purposes. We still get lumped in a shared room with 5 other kids and their families. Excellent for disease control, not to mention privacy… Everything is geared toward the lowest common denominator. Instead of hold music when you ring the hospital you get patronising recordings about keeping hot drinks away from young children and why shaking babies is not safe. Toys are often fixed so that they can’t be stolen. It is a bit of a freak show out there to be quite honest. I could go on forever but I won’t. Just yet.

Our day began with a dash to the hospital pharmacy where they charged me $78 for a small tube of numbing cream for Ted’s blood test. See that right there is really sad. Many children would have to put up with the pain when costs are that high.

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Things looked up from that point on because our amazing play therapist met us at the Heart Centre lobby and Ted immediately perked up and enjoyed playing with the toys. She stayed with Ted the entire day, we couldn’t have done it without her.

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After appointments with his anaesthetist and the genetic researchers (we are participating in the whole-genome sequencing project as well as the Fontan Registry)  Ted had an ECG.

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Then some x-rays

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Then it was the moment we have been preparing Ted for… the blood test. He blew everyone away with his bravery. He didn’t flinch. He played Angry Birds on the iPad and Karen and I spoke to him the whole time. He was truly amazing. Normally we have to restrain him with the help of a few others. The preparation paid off.

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After doing some Angry Bird craft in the waiting room we took Ted to the Starlight Room for a break. He loved playing with Captain Starlight and playing the drums like his Papa.

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We met with some more doctors and Teddy was beautifully polite and compliant putting up with a lot of poking and prodding for one little boy on one big day. 



 I promised Ted he could choose a small toy from the gift shop for being so brave and beautifully behaved. He chose the biggest toy they had. Of course.

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We have been given the all clear for surgery on Wednesday provided the cough remains as is and he doesn’t develop fevers or other signs of a cold. We have had to up the ante on the asthma meds as he was struggling a little today. We are praying the cough settles over the weekend as it does seem to be worsening a little today…

Unfortunately Ted’s big sister has a bad case of tonsillitis and his baby brother is the sickest I’ve ever seen him with croup. We have had a few emergency doctor trips with little Monte this week. I’m praying the poor fellow starts to improve this weekend. It breaks my heart to think of being apart from my other children next week especially when they are so unwell. Ted is staying with Grandma tonight, we are trying to quarantine the sibling germs.

A Spanner in the Works

09 Monday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 3 Comments

Tags

Central Venous Pressure, CHD, chest drains, Coumadin, Cyanosis, Fenestrated, Fontan, HLHS, Non-fenestrated, Open Heart Surgery, Warfarin

Today I have good news and bad news on Ted. I have totally over-simplified the situation but you will get the general idea below. The good news is that the doctors have said that if his cough remains as is and he doesn’t develop any other symptoms then he can go ahead with his surgery next Wednesday and pre-admission this Friday. We just need to isolate him at home from now and keep him well and continue with the asthma meds and antibiotics.

The bad news came at me like shot today when I had a missed call from Ted’s surgeon. I knew he wouldn’t be calling me for a random chat. Following further analysis of Ted’s cardiac catheter results from last year, a change in surgical direction is now on the cards.

The way I see it, there are 3 possible outcomes. Two suck and one is ok. Two are realistic and one is a miraculous pipe dream. The plan was for Ted to have a non-fenestrated Fontan. This way, if successful Ted would for the first time be ‘pink’ like regular children. He wouldn’t have little blue nail beds anymore, he wouldn’t have purple lips. He would potentially have oxygen saturations in the low 90’s. While he would go home from hospital on Warfarin therapy he would after 6 months transition back to regular Aspirin.

Now it seems more likely that his surgeon will have to fenestrate his Fontan. This means he will have a 4mm hole cut into the gore-tex shunt. His oxygen levels now in the low 80’s at rest would remain there meaning he would still be blue. He would be at higher risk of stroke so would have to be on Warfarin and not transition to Aspirin. He would have frequent blood tests to adjust warfarin dose and he would have to be very careful with activity as his risk of bleeding to death say from a bump to the head would be significant.

After 12 months like that, we would be eligible to take Ted back in to have the fenestration closed and he would then have the higher oxygen saturations and could move off Warfarin and onto Aspirin. As a parent dealing with a four year old I predict some difficult conversations ahead. He may feel terribly ripped off after going through a horrid post operative period to come home looking the same but needing frequent needles (you may recall his severe needle phobia) and having new activity restrictions. It really seems like the short straw.

On the other hand the reason for the fenestration is that Ted’s left pulmonary artery is not looking so flash despite the stent it now has. Fenestration will reduce central venous pressure meaning Ted should avoid a significant pleural drainage problem. Often that results in kids needing to be starved for 6 weeks with multiple chest drains in place with absolutely no fluid intake at all. He would survive on TPN alone. Imagine telling a four year old ‘no you cannot have even a bite of food, not even a sip of water’ for weeks on end?!

So A.) we have a blue kid whose needle phobia becomes a living nightmare for a year or B.)we get a pink kid who we have to starve for weeks/months with painful chest drains in the hospital or C.) miraculously in spite of his complex anatomy Ted sails through a non-fenestrated Fontan and had no drainage concerns…

There are a bunch of other factors at play but the bottom line is that we are facing a pretty awful week next week but still grateful that Ted has some hope of an ‘ok’ outcome.

Being Prepared Always. Like a Scout.

29 Thursday Jan 2015

Posted by carolyngalvin in Uncategorized

≈ 5 Comments

Tags

CHD, Fontan, HLHS, Hypoplastic Left Heart Syndrome, motherhood, organised

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Until the recent demands of three young children caused a temporary lapse in my hyper-organised state, I would have considered myself a very well prepared type of person. Organised almost to the point of being a Scout. Note however that I find the whole scout thing generally rather odd. It seems almost cultish, never mind the scarves and all those knots…

Being prepared for Ted’s Fontan surgery has posed a stumbling block for me not just because we are facing the 20% cancellation rate that unfortunately affects all patients in Australian public hospitals. Also we have the added consideration that if Ted has even a slight sniffle he will be deemed unfit for surgery.
So here I find myself juggling my inherent desire for everything to fit nicely into place and the reality that it could all be postponed at the last minute. I am still struggling to find suitable care for my 7yr old and 18 month old during Ted’s hospitalisation. Not knowing if he faces 3 weeks in hospital or 13 weeks make it very difficult to find a temporary nanny.

Preparing my precious boy is another issue entirely. Ted is incredibly sensitive and suffers with anxiety and phobias of needles and medical gloves. To deal with this I have been taking him out to the hospital for weekly sessions with a wonderful ‘Child Life Therapist’ who aims to give Ted coping strategies through play. While play therapy is a lot of fun for Ted with his truly wonderful therapist, for me the sessions are particularly upsetting. Watching Teddy learn through play that he will be subjected to countless painful procedures is crushing. He plays with the multi coloured tourniquet they call “a funny arm seatbelt” and he cracks jokes and smiles as he puts it on the dolly. While it is all laughs for poor little Ted in these sessions it breaks my heart because I know how much it will hurt in reality and I hate so much that this has to be his reality.

When I was 13 I remember being awarded an amusing prize after a ballet performance for ‘best stage smile’. Still to this day I reckon I could hold a cheesy smile for about as long as it would take Ted to walk a kilometre. That’s a very long time. This brilliant skill has come in very handy since we were dealt the blow of HLHS. Holding Ted and making jokes as he fights the anaesthetist placing the mask onto his face before surgery is always a struggle. Not crying in front of Ted is sadly very important.

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The ‘F’ word. Fontan explained.

18 Sunday Jan 2015

Posted by carolyngalvin in Uncategorized

≈ 4 Comments

Tags

Bi-directional Glenn Shunt, CHD, Congenital Heart Disease, Fontan, gore-tex shunt, HLHS, Hypoplastic Left Heart Syndrome, left ventricle, perfectionist, prenatal diagnosis, right ventricle, Single Ventricle Defect

Friends always ask me to explain what this impending Fontan surgery entails.

Being more of an arts person than a science person I have struggled to answer it with the degree of certainty a perfectionist like me demands. So I have grilled Ted’s surgeon and also his cardiologist. They have drawn me diagrams and patiently answered my questions. Even those irritating ones generated by reading terrifying research papers late at night. I have taken to research like only a frustrated housewife could and finally I have the answers. Well, I have some.

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An ordinary heart has two ventricles, with the left one pumping (red) oxygenated blood to the body and the right pushing (blue) blood to the lungs where it is then oxygenated and flows back to the heart.

Ted’s heart is different. When he was born all of the structures on the left side of his heart were too underdeveloped to pump enough red blood to keep his body alive. In the uterus it was my circulatory system doing all the work, that is why he was otherwise perfectly formed. He was safe in the womb, it was taking that first breath that started the danger.

The first and second stage surgeries totally re-plumbed Ted’s heart so that his right ventricle did the work of the left as well as the right, thereby mixing red and blue blood. When you stand Ted next to other children you see his colour is different, he is blue. This final stage aims to stop the mixing of the blood, by changing things so that his single ventricle heart has only one function; sending oxygenated blood to the body.

The blue blood will passively flow straight into the lungs totally bypassing the heart. This is done by disconnecting the inferior vena cava (the vein that normally takes our blue blood from the lower part of the body up to the heart) and re-routing it with a gore-tex tube up to the lung arteries. Red blood can then pass freely to the heart.

I have a headache. Do you?

Hopefully that makes sense to you.

That all sounds great you say, why the panic and why the dread? Because friends, nothing comes without a cost and there are a number of risks and short and long term side effects that I can delve into in another post. The bottom line remains, and that is that without this procedure our son’s heart in the current form is not compatible with life.

The last four years in an 800 word nutshell

11 Sunday Jan 2015

Posted by carolyngalvin in Uncategorized

≈ 8 Comments

Tags

Bi-directional Glenn Shunt, CHD, Children's Hospital Westmead, Congenital Heart Disease, Fontan, HLHS, Hypoplastic Left Heart Syndrome, Norwood Procedure, Sano shunt, Single Ventricle Defect, The Heart Centre for Children, VSD

Ted was born with Hypoplastic Left Heart Syndrome. Essentially, half a heart.  There is no cure and his treatment is called a 3 staged palliation. Nobody wants to hear “palliative” with regards to their child, nobody.

This means that our little boy needed a series of open heart operations to enable his single ventricle heart to work well enough to sustain his life for as long as it can. After surviving his first open heart surgery shortly after birth we were told he had a 70% chance of making it to 5yrs of age, beyond that nobody knows.

We found out half way through the pregnancy. They encouraged us to terminate our son. We refused. We adored him. We begged for a referral to a cardiologist. We decided to name him Theodore because it means ‘a gift from God.’

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What we found out about Theodore’s heart horrified us, but we held tight to the belief that every child is a gift from God and through our tears we tried to focus on the positives. We wondered if he would be like his 3yr old sister and wondered whether we would have him in our lives long enough to find out.

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We had read the studies and we saw the pictures, we knew Teddy’s journey would be horrific.  We were reasonably prepared to see our tiny baby after a marathon Norwood-Sano surgery at 2 days old. The operation is the most complex of all CHD surgeries it took all day. We weren’t prepared for the complication at 10 days that saw him back in the operating theatre. His little chest had begun to heal but already he was going back in to have a pericardial effusion drained. He had only just been extubated and he was back on the ventilator.

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Quite the little soldier he recovered well, but once he was extubated this time it became apparent that he had suffered vocal cord palsy. We were told his voice may or may not return. He was banned from swallowing and for the next few months had to be continuously fed via trans pyloric tube.

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 At two months of age Teddy faced yet another open heart operation. This time a Bi-directional Glenn Shunt and a Pulmonary Artery Augmentation.  Following a cardiac catheter procedure we then had to prepare for the Glenn- the second stage of his palliation. Two weeks earlier Teddy’s beautiful room-mate Keeley had died following the Glenn. We were very scared to hand him over for more surgery as we mourned the loss of another heartbaby. We were still heartbroken after our dear friend Erin lost Pippa to HLHS following the Norwood.

 The operation was difficult but Teddy seemed to be doing well in the first 24 hours but then things went downhill and weaning off Nitric Oxide was not successful. We had never felt such terror. It took a lot longer than it should but eventually he was extubated. Unfortunately he was not the same little boy. He didn’t recognize us anymore, wouldn’t smile and just screamed and stared into the distance. We had neurologists examine him and he underwent a lot of tests. Fortunately God blessed us and little Teddy eventually returned to normal after a few very rough weeks.

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After many months he finally came home and by his first birthday he no longer had a feeding tube and his life became a lot more normal.

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By Ted’s second birthday he was doing a lot of the things other children his age could do. By three our little miracle boy was amazing doctors and delighting loved ones as he prepared to start preschool.

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Today he is a chatty little almost-four year old, however the capacity of his single ventricle heart is waning and he is often breathless and blue. He cannot keep up with his pre-school friends and he often cries about having a ‘special heart’ and feeling breathless. It is time for his Fontan surgery. It terrifies me to admit that, but it is time.It has been set for mid- February.

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 Seeing Teddy do his ‘ninja turtle dance’ makes us very happy. It is these small things that bring us joy these days. There are plenty of sad moments like realising how tragic it is that we get so excited when we read about a person with HLHS making it to their 20’s. As though it is some major achievement to get to 21?!

It is cruel and unfair that we are facing old age without our son, nobody wants to outlive their children. All we can do is pray for advances in medical science so people like Ted can live healthy long lives and that instead of 20 being an achievement, we’d like the average to be closer to 100!

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