After a hard year of watching master 4’s health decline to the point of not walking around and collapsing out of breath I am glad to tell you life has changed and is so fantastic.
He has just had his third open heart surgery the Fontan. The final stage of his hypoplastic left heart staged reconstructive surgery.
The three-stage procedure is a palliative procedure (not a cure), as the child’s circulation is made to work with only two of the heart’s four chambers.
His recovery was up and down and he had the typical issues of heart changing Rythym and bleeding and prolonged drainage. He had to go on Tpn to help his plural drain stop draining and also a low fat MCT diet as he also had chylothorax. The whole time he had been in high spirits and dealing with way more than many have ever been through.
He is on warfarin and was needing daily blood tests which were very traumatic as children with complex medical issues usually have little or not many available veins. It could take up to six needles some mornings to get one INR test. He would scream every time he would see a blood collector.
No needles no needles he would scream !!
His INR needs to be checked to make sure his blood isn’t clotting or to thin with the risk of internal bleeding. We have now purchased a finger prick machine to test him daily Which has helped minimalise the trauma emotionally and physically.
No more blue lips
Energy and hunger like no other
Can now chuck a tantrum and not run out of breath