Overall for his first day post Fontan Ted has gone very well. While a pleural effusion (right lung) was found on X-ray this morning followed by some wheezing, he managed to cough quite a bit at lunch time and he then had a huge fluid dump from his pleural drain. Since then we have not heard the wheeze. 



He has eaten four grapes and had a few teaspoons of passion fruit yoghurt. There has been a slight increase in his fluid allowance so we do not have to say no quite as much when he begs for a sip of water! 

His mood has been low but who can blame the poor little fellow! We have tried to tempt him with sweets and my friend Lisa gave me some Teenage Mutant Ninja Turtle earrings to wear to see if that might cheer him up.  So far no smiles. Yet! Might be hard to tell but I’m modelling the Leo and Raf turtles in the photo below!





Teddy had his first wash today. Fair to say he hated it:

Edit

As is the way in ICU there is always a lot of balancing of fluid in and out and watching renal and liver function. The doctors and nurses here are exceptional. Here they are having a meeting about Ted’s progress. 

Edit



Ted has to start Warfarin (Coumadin) today and after very lengthy discussions with his doctors I have consented on the basis that we reassess once a therapeutic dose has been established. My concern is the constant blood tests for my precious boy who really fears needles. I am thankful that his cardiologist was open to discussing it with me this afternoon for an hour to really reach an agreement we are both happy with for Ted. 

Fontan completion is not just for people with hlhs like Ted.  Other single ventricle conditions result in Fontan surgery, the difference is that post operatively the HLHS patients are by far the trickiest to manage. They tend to have the toughest course so we are praying that Ted bucks that trend. 

I will try to limit my whining on this blog but I could not help but share this. 

Ted has asked for grapes to eat. ICU called the kitchen to ask for grapes to be sent with his lunch meal. 

They said no. 

Because today the fruit is orange or apple not grape. 

So I had a little tantrum.

Anyway the cafeteria that seems to specialise in chicken nuggets and other revolting fare actually has grapes in their fruit salad boxes. 

I asked if they could perhaps sell me just some grapes. They said no. 

So here is what a $6.00 grape looks like. I had to buy the fruit salad for the solitary grape. 



We are pleased Ted is now allowed to have a very small amount to drink. He is still crying about his thirst which is very sad indeed. 

They were able to remove his pacing wires and the left atrial line as well. 

While he is severely fluid restricted he is allowed to eat. He doesn’t want to eat yet so we will wait and see. 





Teddy has been quite stable and they have successfully extubated him this morning. He is quite sad asking for fluids which we have to continue to refuse because his heart can’t tolerate the load. He has significant losses from his three drains. 

They are working on reducing some of the drug infusions- milrinone and Norad. Cardiac rounds will start in the next half hour and we will learn some more then. 



So it is good news on that front. His LAP has come come down. He is still ventilated. Thank you for all the prayers. Will update any significant changes. X

Ok so this may be a lot of medico lingo for most but for those interested, the latest concern now is that Ted’s lactate is rising as is his left atrial pressure. 

Cardiologist en route to do emergency echocardiogram and an X-ray to see whether he has an effusion around his heart. 

They are now unable to extubate he will remain ventilated. 

Quick update- at the moment Ted is still ventilated but comes in and out of consciousness where he tries to remove his breathing tube. 

He has had to be restrained. It is very sad to see the white bandages tying his arms down. 

He has mouthed the words “mama” and “drink” and he nodded when I asked him if he was ok. 





He is on severe fluid restrictions his heart will not tolerate the load so we have to keep saying no to any requests for fluid. 

Apparently once the breathing tube is out he has another four hours without fluid then can have 10ml per hour. 

This will not go down well with poor Ted. A long night awaits us. 

The wonderful ICU teammate watching his numbers carefully. He is critical but in the best hands. 

I will update any significant changes. 



So here is our beautiful brave boy





We have just spoke with Teddy’s wonderful surgeon. Ted is being stabilised in theatre and will soon be in ICU so we can be with him shortly. 

The Fontan was a success. Ted’s Fontan pressure was 15 meaning they did not have to fenestrate. He is ventilated and his condition is critical but his surgeon is very positive. 

The next 24 hours will be critical in order to stabilise Ted’s new circulation and the initial goal is to get him off the ventilator. 

His surgeon reminded us that HLHS Fontan children do not generally recover as well as other Fontan children with the biggest issue being drainage. 

Keep praying. 

Teddy was the bravest little boy on the planet. He went to theatre in good spirits and was very calm for the anaesthesia. He went in at 8am. 

We won’t expect to hear anything until maybe lunch time. 

Please keep him your prayers- our amazing little fellow.

Xx Carolyn