Update

Matthew update:

Matthew has just been kind of riding the wave for a few days now. On Tuesday of this week the Dr noticed his breathing has become a little more labored. They started doing all kinds of tests. Blood tests, x-rays, echocardiograms, ultrasounds, and more x-rays. They blood tests and x-rays all have come out being ok. There was one day his blood work came back a tiny bit abnormal. The echo actually came back and it looked really good. Better then his previous one after his last surgery. But the cardiologist did see some fluid around his lungs in his plural space. So that is where the ultrasound and more x-rays come in. He had those done yesterday. We talked to the Dr yesterday and she said he could possible have pneumonia again or something called a chylothorax. This is a condition where you have a lymphactic fluid leaking into your chest. This is not a good thing. This was a very worrisome thought. Well today we talked to the Dr again and they could not find a leak anywhere and they have completely ruled out the chylothorax and pneumonia. YAY!!!!

We know about how negatively a chylothorax can affect you because there is a little girl who was born two weeks before Matthew with undiagnosed CDH with heart problems as well. She had multiple surgeries, a couple of the same ones Matt has had. They think during one of her surgeries that something was nicked and caused the chylothorax. She has been leaking fluid into her chest for weeks now, they put chest tubes in and tried different medications. Today she lost her battle with CDH. It was very hard to hear this. We have become pretty close with the parents in the 6 1/2 weeks we have been in the NICU. Just knowing that she had some of the same things as Matthew just makes it that much harder to take. Little Elizabeth fought hard and was a very strong little girl. Her parents were at her side all the time. They have 9 other children as well and were with her as much as possible. They got to hold her until the end. RIP Elizabeth, you are in a better place where you will not have to endure anymore pain.

So with that said we are extremely greatful that there was not a chylothorax found. The Dr's have said they are quite certain his breathing and all of that is from withdrawls. They are SLOWLY weening Matthew off of morphine and phenobarbitol. He has had slight fevers and sweats a lot. Poor little guy. I just wish I could take some of the discomfort from him. He has been through so much in his short little life, but he is still on the right track. So we just keep praying for him to get better so that he can come home.

That is all the update information I have for now.

Jaime