Well, we are at home. 👏🏽

Joseph smiled so big when we took him out of the car seat at home. 

He’s doing a good job of breathing on room air. His discomfort has improved somewhat, but it’s taking a bit to recover. He had a big week and a half. 

We will do wound care on his incision and side drain site until his Post Op appointment. Then they will take out the stitches and we will hopefully just have to keep an eye on it -just that it’s healing properly from then on. 

He is on two different diuretics to help with fluid retention. 

We are weaning his Clonidine, and he was already weaned off his high blood pressure pill. 

He does still have about 7 meds to give- some of them multiple times a day. The meds will decrease the further away from surgery we get. 

We will always be on watch for Congestive Heart Failure signs. We also will watch for swelling of his face, arms or hands. This could mean the blood flow to the lungs from the upper body is obstructed or something of the sort. Of course, he will still be quite sensitive to colds and flu- one reason being because of his oxygen needs. 

Now that his main vein is draining passively to the lungs from the upper body, when he cries or gets mad he quickly desaturates. This is because his body constricts the flow of blood as he cries, and so it doesn’t flow through as quickly. The blood only passively flows through, instead of getting pumped like the average person. He turns alarmingly purple/grey within a short amount of time. This is considered quite normal after a BCPC (Glenn) surgery, so that was something to get used to. 

The day after surgery, Joseph did absolutely amazing with feeding from a bottle. He drank 150mL right off the bat. When his lung collapsed, and he had to be re-intubated, etc, he took a downhill turn again. Ever since that happened, he has not been interested in the bottle. So, we are back to feeding with his NG tube. We have a consult with the Gtube team in April. We hope Joseph gets stronger and more relaxed at home, and will start being interested in his bottle. Maybe we’ll be able to cancel our Gtube meeting and he’ll just start feeding orally 100%. 

Physio will be coming to our house every 2 weeks to help with his recovery and development, feeds, and overall health. 

Most of our appointments should be in London from now on, which will be nice. 

The next surgery, the Fontan, will be around 2-4 years of age. 

We are extremely grateful to be home. And, of course, thankful for all the prayers & well wishes. 

🫀💙