FAQ and Update

Greetings all. Thaddeus had a checkup at Children's this past Tuesday. He goes to Children's' once every two weeks and sees the doctor up here on the off weeks. He weighed in at 9lbs 2oz. He has averaged a gain of 1 1/3 oz per day since he has come home. The goal we were given was 2/3 of an oz per day. He was measured at 21.5 inches which is an increase of 1.5 inches. He is doing well and the other kids are doing very well with him. I was most concerned about Quintin suffering from some jealousy, but fortunately, he seems to like getting attention from Dede, Charlie, or me almost equally, so much of the time there is someone around to make him feel loved. Charlie has been a great help to us holding and feeding Thaddeus. So much so that we have to keep an eye on her to make sure she is doing her other work! I have had a number of questions pop up recently so I thought I'd do a FAQ.

Thaddeus is on four different medications that he takes from one to three times a day. These will keep up until the next surgery. We also weigh him daily, check his oxygen level in his blood and keep track of every ml he drinks. This also will continue until the next surgery.

He is on a low dose of oxygen. It is not life sustaining in and of itself, it just makes it easier for him to breathe, thereby easing the work load on the heart. He can go without it if needed, which is somewhat often considering how many times he has pulled the tube out of his nose on his own! The oxygen should be around until after the next surgery as well. We have a large compressor in our bedroom for him most of the time, but we do have a large profitable tank for the first floor and smaller portable tanks for when he goes out. He even got to come to communion on Sunday. Dede held him and I got to hold the oxygen tank!

In addition to us driving to the doctor each week, a nurse comes to see us from one to two times a week. Children's' also calls us once a week to check in.

The next surgery is not scheduled and will not be until Thaddeus lets the doctors know it is time. While we are happy with how well Thaddeus is doing right now, the reality of the situation is that we are waiting for him to start to go down hill. The shunt is meant to be a short term solution. When he outgrows it, his numbers will begin to fall across the board and then it will be time to go back in and take the shunt out. The doctors will then disconnect and artery from his heart and reconnect it elsewhere. This will stay that way until he needs a heart transplant. So right now we rejoice in every oz or gram gained, but he can't really come into what will be normal for him until he gets the second surgery and that won't happen until he is no longer doing so well. So we will take it while we can, but we know it won't last and in a certain sense look forward to it ending so the longer term healing can begin. The third surgery will take place in a few years when they will disconnect the other artery to the right side of his heart and reconnect that one elsewhere as well.