Today was a bad day. There were no critical backslides, just a whole lot of medium backslides.
We called the hospital this morning and found out that Caleb had been crabby through the night, but there were no changes made. When I got to the hospital, I found out that his diuretics had to be switched back to IV. They were hoping that would solve some of the crabbiness and get the right amount of fluid away from his lungs.
Yesterday, they thought there might have been some blood in Caleb's diaper. This morning, they did an abdominal x-ray with his chest x-ray. His lungs looked better and there was no glaring problems with the abdominal x-ray.
I talked to the nurse practioner and after consultation with the cardiologists and surgeon, it was decided to do another heart catheterization to see if they can determine if the shunt really is too big. The doctors can determine the pressures leaving the heart, both out to the body and out to the lungs. This would give them much more information than we have now. While it is scary to intubate him again, at least we would hopefully get some answers.
I asked the nurse practioner why Caleb has not gained any weight. The reason is that they are pulling off as much fluid as he is consuming. If they let the fluid stay, it goes around his lungs and causes problems. Part of the reason for the heart catheterization is that for now, we are stuck. He has to grow to have the next surgery and get rid of the shunt. He can't grow because we think the shunt may be flooding his lungs with blood.
I changed a diaper this afternoon and it had more blood in it. To protect his bowels, they removed all of his feedings and switched him to the TPN. TPN is the nutrition that goes directly to his blood. They put in an NG tube to remove all of the contents of his stomach. By doing these things, his bowels are no longer required to digest anything. All blood going to his bowels can now be used to keep them healthy. They also put him on antibiotics in case they was any damage to the bowels that may cause infection. The pediatric surgery people will be keeping an eye on him to make sure there are no problems. As of right now, they think he will be off of regular feedings for a week to 10 days. When they resume his feedings, they will start very slow (3 mL per hour versus his previous 20 mL per hour) and monitor him to make sure there are no problems.
Because of the concern about his bowels, Caleb will probably not be able to have his heart catheterization until next week. So for now, we are just waiting things out. On the bright side, nothing that has happened has caused any damage to his body. These things are just taking time, but not hurting him. If we are going to be here until his next surgery, this week is just one part of our waiting game and is not extending our stay. There is also the chance that with the heart catheterization, we may be able to find out what the problem is. If we find something that can be fixed, it may allow us to get home before the second surgery. That is something that we are definitely hoping for!