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.
Oh Carolyn I don’t even know what to say. I don’t imagine you get a choice if the Fontan needs to be fenestrated. I think I would choose the needle phobia option over saying no to food and chest drains with possible infections for such a long period of time. I am going to focus on praying for the miraculous option – you and precious Ted deserve nothing less!!!!
Thanks Michelle. We have no choice to make I think I am glad it is out of my hands to be honest. I love our team and I trust them to make the best decision for ted at the time I just wish things were different for him. Drainage issues are still a concern with a fenestration but tend to be less likely. Let’s see..
Joanne Rose said:
We will also focus on praying for a miracle outcome for Teddy. From what you have told me he is good at miracles! Yell out if you need help with anything – I mean it! xx Jo