The Good, the Bad and the Ugly

The Good:

Noah was very interested in eating today. He had small bites of breakfast, lunch and dinner. At dinner he really wanted to eat chicken and opened his mouth very big. Unfortunately all of these meals come with nausea and then he stops. This is better than yesterday because he did not throw up. But it is also disheartening as he complains of his belly hurting and has fear in his eyes as he says, "I am going to throw up!" He really wants us close for comfort, leaning over him until he falls asleep. His pain has been under OK control today also. The Drs. again state that all of his vital signs and heart function also look good.

The Bad:

Although his vital signs and cardiac function look good, the Drs. are concerned with his high chest tube drainage (from lungs). They have non-invasively looked for surgical leakages or other anatomical answers with x-rays and 2 different ECHOs. Nothing remarkable has been visualized. Noah has remained stable through all of this. Stable still is not the son we play with at home. He is in pain, functioning on morphine, and frustrated with laying down, not being held, pottying in a catheter, and no privacy for poo-poo. This is weathering mom and dad also. We want Noah! We have very heavy hearts looking into his glazed eyes, slow responses, and constant sleepiness.

We were also saddened that Isabel had to go home today. She wanted mom and dad to go to Greenville with her and stay in her house. She is also concerned with her brother.

The Ugly:

Non-invasive tests have not found any answers and he has not shown any signs of adjusting. His output remains high, but in the same light it has not increased so we hope we are on the plateau. His Drs really want any decrease! Regardless, the waiting game has ended and Noah will have a cardiac catheterization tomorrow around 11am. This is being done to look for additional blood vessels he may have formed from his aorta to his lungs (common for kids with his heart abnormality and Noah had one treated when he was 6 months old prior to surgery #2). If found, these can be stopped to decrease the amount of fluid sent to his lungs, thus decreasing drainage. They looked for these prior to this surgery but some that are small prior, really become pronounced after the surgery due to the higher pressure changes. The physicians also planted a scary seed. If nothing treatable is found and drainage does not slow "naturally," then full heart surgery is needed. There area couple of possible procedures, neither of which we want. This news was very difficult to handle today. Please take a time out in the morning to pray that the cardiac catheterization is successful and his drainage slows down. Julie and Brad, thanks for your comments yesterday, we really needed the advice.