Today was Caleb's day of rest. No major changes were made in medication or ventilation. He hung out and was held by his Dad for a good portion of the day.
Phil talked to the Nurse Practioner today. He found out that they were actually quite worried about Caleb yesterday afternoon. He was really struggling to breathe and it wasn't until last evening that he began to improve. The NP called back later in the night to check on him because when she left his situation "gave her an upset stomach". Whether it was the pain medication or not, we are glad that he evened out!
Tomorrow, Caleb is going to get a new line for access, a PICC line. It will require another trip to the Catheterization Lab, but they told us it shouldn't be too difficult to get in. This line is better for longer term and is much less likely to cause an infection in his blood.
The next step is to get the proper amount of blood and blood pressure in Caleb's lungs. Right now, they think that his shunt may be too large and it is getting too much blood to his lungs. They can control it with his medication. The problem is that getting everything tweaked takes time. The blood pressure, oxygen saturation, feeding protocol, heartrate and respiration rate all need to be balanced and in the proper range to keep his heart and lungs healthy enough for everything to work, both now and in the future. The NP told Phil not to be surprised if we spent as much time in Moderate Care as we did in the PCTU.
Of course we weren't excited about the possibility of three more weeks in the hospital, but we can deal with the situation. We want to bring Caleb home as healthy as possible and give him the best possible chance of being a healthy kid. While our family is not able to be in the same place, we are able to split up and keep the other kids in a normal school routine and we are able to do most of what we would be doing with Caleb if he was home. We get to change some diapers, hold him, talk and sing to him - do most of the normal baby stuff. We are not missing out on his baby time, we are just doing it in Ann Arbor.