I’ve always thought I am one of the unlucky folk without any particular talent. I have some incredibly talented friends who excel at all manner of interesting things and then there is me. 

Until now. 

Today I decided I do have a talent. I have a talent for packing a hospital bag in a hurry. I’ve been patting myself on the back all day today. Occasionally glancing over at my well packed basket.  In between bemoaning my kids’ health and my personal woefulness. Yes, this is a bit of a poor me blog post. Prepare the violins. 

With Rich overseas and my parents away I pulled together a very useful collection of hospital items at five this morning when I made the call that I couldn’t wait til mid morning when my GP opened. 

Poor little Monte was up all night with breathing problems and Ted had a bleeding issue that I thought we should investigate given the Warfarin. After calling every single home visit GP in Sydney with no luck and then driving the kids at 7am to a Medical Centre where we were turned away we presented at the emergency dept of our local hospital.   

We were seen right away and the triage nurse was excellent. We didn’t have to wait at all And I was so grateful. Ted had to have some blood tests and Monte needed an X-ray and he was started on oxygen right away. My wonderful friend Jenny came to the rescue for Tabitha and took her on a fun play date so it was just my two boy patients and I left.  By lunch time after a minor change to Ted’s medication regime he was allowed to leave. 

Luckily for us my parents’ plane touched down at about that time and before too long the super grandparents had arrived at the hospital to collect Ted. Leaving just Monte and I and the large bag of sweets I found in my car. So poor little Monte and I are now preparing for a night here. Hopefully he will be a lot better tomorrow and we can go home. Still it seems so weird that little Monte could have oxygen saturation a lower than Ted. Crazy. 

I have to give a big mention to the staff and facilities here at Royal North Shore Hospital. Seriously. It is a nice change for us to be in a nice, new hospital where everything is bright and clean. It really changes your mood. They have this awesome fairy garden in the paed ward here are some shots of Monte enjoying his time in there.    

I wasn’t so fortunate with the car park here. They put a parking fine notice on my windscreen for overstaying in the emergency bay. I will appeal it but if anyone is going to lose such an appeal it has to be me. I’m always being fined for parking near the school despite Ted’s mobility permit and all of my appeals have failed! 

Cross your fingers this little firecracker improves exponentially overnight so I can get him home tomorrow. There is much to do with school starting Monday and Papa will be in the UK all week.  We are so thrilled that Ted will soon be back with his classmates in Orange Snr Class. 

I will type up a detailed update on Ted’s heart progress once I’m back home. Xx

I have re written this post a hundred times in my head since coming home with Ted after his Fontan.

People keep asking me excitedly “so is this it now for Ted? No more surgery?” and I am finding it hard to give an authentic animated response to that question. In part because the truth is both positive and negative. Yes this is it in terms of the Fontan being the final stage in his palliation. Excellent news that there are no more open heart surgeries on the cards for our precious little boy. Amazing news that it appears to have been a success for Teddy. Yes, that is brilliant. But is it?

Is it really great that this is as good as it gets for our son? Now that his single ventricle heart is working as well as it can possibly work, there is nothing else for the doctors to do but to continue to monitor his function and adjust his medications until his heart gets to a point where it can take no more. Nobody knows when this will be and nobody knows what wonders medical science has in store for hearts like Ted’s. Our prayer is for a cure. For the doctors to somehow figure out a way to add another ventricle to these special hearts.

Fontan circulation for some people has been known to last even into their late twenties, and for others it has led to fatal side effects like Plastic Bronchitis or Protein Losing Enteropathy. The two cruel conditions that took the life of an amazing little Aussie boy with HLHS Levi McCormack. His story was highly publicised here and his beautiful spirit touched the hearts of millions. Levi’s wonderful family remain in my prayers, his inspirational mother Karina really is Heaven-sent.

Learning to live without this gut wrenching fear is something to work on over time. Perhaps we will always be looking over our shoulder. It is too soon to tell. Fontan circulation comes with a bag of potential problems and we do not know which kids will fare well, but the work of the Fontan Registry will hopefully provide us with some answers one day soon.

We don’t tell Teddy that the doctors “fixed” his heart, we tell him that they made it “work a lot better than before”. He asked a few days ago if his heart was “still special” and I told him that his heart will always be special even now that he isn’t blue like before… “and even now that I don’t get puffed out doing the minion dance with Monte?” yes Ted, even now.

While Rich and I will keep working on our adjustment to the notion of this being the terminus of Teddy’s treatment, our little Ted will continue to face each day with his beautiful enthusiasm for life. And after all, that is but the job of a good parent. To equip a child with everything they need to achieve their dreams and never ever allow their childhood to be weighed down by the disdain of reality.

See the delight on Teddy’s perfect little face? This was taken last week when his preschool class sent him this teddy bear covered in their well wishes and beautiful drawings. He has taken it to bed with him each night since. Along with his tough pirate, his heart bear, his polar bear and a big bunch of ninja turtles. Just some of the toys Ted received from friends near and far on his journey to recovery.

This week Ted has his first post-Fontan follow up with his surgeon, we have a feeling we will be given good news on his progress. Keep your fingers crossed.

To all of you, our wonderful family and friends -thank you again from Rich and I. We could not have done any of this without all of your love and support. xx

Ted enjoyed a lovely weekend with lots of special visitors. We were lucky to have Auntie Kate and Gra staying with us from Melbourne. We took Ted out for his first proper outing since leaving the hospital. 



We had a lovely dinner together at Golden Century restaurant in Chinatown for Ted’s favourite salt & pepper crab. 

We also had a great visit from our friends the Dohertys who came laden with gifts including this giant chocolate bunny. 



See that big bell around the bunny’s neck? I think someone from Weight Watchers initiated that because every time I go to sneak a nibble of the bunny that bell rings and everyone is alerted! Genius. 

Monday afternoon will see poor old Ted having yet another INR blood test at the Warfarin Clinic. We shall use that giant chocolate bunny as a bravery bribe in addition to Ted’s new chart:



The day before Ted’s surgery I took a photo of his toes with mine for comparison. He used to be blue. Now he is pink. 



So that photo there is my thousand words for today. Amazing. 

What a pain it is. Let me count the ways. Perhaps i will save that for another day. 



Ted had a difficult first night back at home. The night terrors are quite distressing and the sleep deprivation may just send ME batty, never mind him! Hopefully we can turn this around for Teddy soon and have our happy boy back. 

We had a long day at the hospital today (or mostly in traffic getting there and back) but the good news was Ted’s blood is now starting to do the right thing INR wise but the bad news is they need him to return for more testing on Monday. Poor Teddy it really is heartbreaking. He hates needles so much and he dreads the tests. 

He was very brave and cute for his dressing change at lunchtime today. He even helped his favourite nurse remove the steri-strips.  





The highlight of Teddy’s day was when the hospital car park payment machine ate my ticket. The security man opened up the machine and Ted thought it was brilliant and insisted on this photo below. He was so chuffed that he slept all the way home. 





We had some wonderful visitors this morning to cheer us up after another tricky night with Ted waking me hourly crying. 

Ted was thrilled to meet precious new baby Amity and then a little later very excited to see Kahlee especially because she brought with her some amazing Iron Man gloves and a Light Saber!







Ted was so brave for the dressing change today. Here he is sitting up on the  treatment table with his number one distractor for procedures- Angry Birds!





Afterwards Ted’s reward was a sticker on his bravery chart and we let him open his new Light Sabre. 



Not long after we had a psych consult, then the cardiologists sent us down for his ECG and echocardiogram. 





I had a long consult with a very nice haematologist and the haematology CNC today. They went through the complexity of one of Ted’s new drugs (he has so many now) -my most hated Warfarin (Coumadin) and I’m even more rattled about it than I was before. 



He had his INR blood test yesterday and unfortunately threw another silly result so we have to re do the blood test tomorrow. I’m pretty bummed that his ongoing monitoring has to be back out at Westmead until Ted’s INR is stable. Such a long drive for Ted and I especially when we have Monte climbing all through the car!





After building his piggies a new “naughty pig house” we got some stellar news…

We were given the go-ahead to take our beautiful boy home! On the condition that we report back tomorrow. No problem~ we will be there!

So… We left!



Once we got home and gave Ted his night time meds he was very quick to snuggle wih Tabitha for some bed time reading. Here he is, right where he belongs. 



We really are so thrilled to be home. Knowing that quite a few other kids with the same condition following the same surgery are in the hospital still and have been for MONTHS… We are blessed to have our boy back. He has bucked the trend and beaten the odds. How’s that for a double cliche?!

Since he is home very soon after his drain removal instead of being observed in hospital we have been told to be extremely mindful of the high risk of fluid recollecting in Ted’s lungs. While we are back out there tomorrow for bloods, a check up and another dressing change it still feel amazing to be home. 

We are so grateful for the care we received and I’m working on a suitable gift for the nurses. It is rare to come across a dud nurse out there. They really are fabulous. 







FABULOUS NEWS- Ted’s last chest drain was removed just now. 



This is the best news ever because it means we are VERY close to discharge. His lovely surgeon said that in light of his fragile emotional state he will fast track his discharge once the drain is out. 

So I do not think we will be staying a week for observation I think we will be allowed to take him home in a day or so and just return as an outpatient. This would be the best approach given his state. 

Because he was given Midazolam for the chest drain procedure the doctor also drew his blood so that we avoided another meltdown tomorrow. 

We now await the INR results and I’m praying we get a good stable result this time…

This morning we went to a heart fundraiser here at the hospital and Ted was thrilled to receive a heart balloon, a teddy bear, a party bag and this cute tiger face paint!





We are so so happy to be on the homestretch now. Feeling incredibly fortunate to have such a record breaker. For a kid wih HLHS to have a non fenestrated Fontan and have all his drains out by day 11? Pretty miraculous. Now we just have to get this beautiful boy home to mend his spirit and calm his nerves after what has been a rather traumatic week for the little tiger. 

I can’t wait to be given the nod to get him home. I know we can take great care of him there and he will make a beautiful recovery. 

Last night I went home and left Rich here to stay with Ted. It had been a week since my other two children had seen me so I was itching to get back but also felt torn leaving Ted when he was so very vulnerable and distraught. 

He screamed the place down when I left but once he eventually settled Rich managed to get some dinner into him and put him to bed. Rich had a tricky night with Ted but while Ted cried often he wasn’t shouting and screaming like he had been doing for me overnight. Ted started taking Melatonin to help with sleep. 

Rich was thrilled that Teddy woke up in a happy mood this morning. His wonderful surgeon popped by to check on him and brought a gift along for Ted. We are lucky to have such a great surgeon and a fantastic cardiologist for Teddy. 



A bag of yummy Lindt Easter chocolates brought a smile to Ted’s face. Hearing that Ted’s drain was down to 70ml brought an even bigger smile to Richard’s!!  Ted’s doctor mentioned that nightmares can be common after open heart surgery in adults so this may account for the extreme night terrors. 

We are working on the right psychologist to help Ted work through those issues. 

Ted’s Warfarin dose has been changed again and the next blood test to check how it is working is on Monday.  The doctors have told Rich they plan to get Ted home as early as possible on account of his emotional state.  Just hurry up drain!

Ted has been a lot happier today and he handled the dressing change really well today. 



Ted was in love with the gift our friends The Martins sent him. A transformer and this cool nightlight pictured above. Perfect!

Tabitha and Monte were so happy to visit Ted today. We can’t wait to get our boy home.

Sweet dreams

Unfortunately Ted had another horror night.

He screamed and cried pretty much all night. The nurses said they’ve never seen a child so upset overnight. It was so arduous. He is terrified of doctors and nurses touching him. He is not the happy boy he was. He is truly traumatised at the moment.

My friend Kelly came to visit us today wih all sorts of wonderful gifts and we took Ted downstairs to visit the farm animals and the bandaged bear workshop.

Just look at that happy face! Short lived unfortunately because we had to take him for yet another blood test.

Since the test he has been crying and screaming for hours and saying the most heartbreaking things.

His wonderful play therapist was shocked at the decline in his mood and how poorly he handled the test. The child is truly broken. Teddy is a mess and if someone can’t do something productive to help him soon I do not know what I will do.

His INR is still not high enough so the Warfarin isn’t at a therapeutic level so they want another test on Monday. It it beyond terrible the child has had enough! All he talks about is needles and dressings and he begs me to stop people hurting him. He is just so terrified. It is an awful phobia to have when you are stuck on a drug that requires constant monitoring via blood tests.

I’m at a loss.