The saga continues...

Sorry to leave anyone in the dark and not post much after the last one, BUT on Sunday afternoon, we already knew that Robert would again be staying in the hospital until Monday. Since Robert was on the Pediatric floor with no nurse by his bedside, a parent needed to be present at all times (otherwise, he would have been alone in a general hospital room and not attached to any type of alarm). So I sent Phillip on his way home to get a shower, repack a bag, eat lunch/dinner, etc. and I would go when he returned. While he was gone, I pulled a chair to Robert's bed as close as possible (the oxygen and monitor just doesn't go very far) and held him for a while. Unfortunately, due to the circumstances, he gets held very little these days. He was doing great and seemed to love being held. But after an hour or so, his oxygen stats were falling into the 60s (when it had been a general high 70s and low 80s). I gave it a few minutes, repositioned him a few times to see if that helped any, and then called the nurse. Robert had done pretty well that day so over hours of time, his oxygen had slowly been reduced from 2 liters to 1/4 liter. But the drop into the 60s changed all that and every few minutes it was being increased. When he was back at 2 liters and not showing much improvement, the nurses called the cardiologist. As this was becoming our usual battle, he decided to send him to PICU for closer monitoring. The PICU doctors came down to take a quick look at him and get him ready for transfer. Not that I should be "excited" Robert was going to PICU...BUT it did mean that he would have more attentive care. I just don't think it is right that a 3 week old infant is in the general pediatric rooms.

At transfer, I was told that the cardiologist had called UAB. And they were waiting on word about transfer there. Phillip has still not returned from home at this point. I was a little confused and heard that we would be needing to go to Birmingham soon for further consult, monitoring, possible BT Shunt surgery, etc. I apparently did not understand that UAB was looking at the current weather situation and trying to determine if they should send the jet or the helicopter. Around 6:00 p.m., we were settling into the PICU room when we received word that the air transport team would be at USA at 7:10pm exactly. Robert would be transported by jet to UAB. Myself and Phillip were not allowed on the plane, therefore, he would be going alone.

As you may assume (and I would assume myself if I wasn't actually there), I would be hysterical, but surprisingly, I wasn't. Our 3 (almost 4) week old is being airflighted to a city 5 hours away??? But although I was worried, upset, etc., I was also relieved...Robert would be in the same place as the cardiologists and surgeons that would ultimately repair his heart and save his life. It's not a bad place to go I guess...

We stayed in PICU until the air transport team showed up to collect our baby. We signed a few consent forms and off he went. We, on the other hand, still had to find our belongings and drive to Birmingham...physically and mentally exhausted...and very sleep deprived. We stopped for gas and a 5 hour energy drink (for Phillip - the driver) and went. No stops in between there and the hospital.

Upon arrival around midnight, we found Robert all swaddled and tucked into a warming bed. He looked very peaceful and was resting. The nurse told us that his oxygen stats had dropped a few times into the 50s and 60s, but they were able to stabilize him with oxygen, meds, and an IV drip.

As of Monday, we heard that the cardiologist and surgeon are discussing what to do next...BT Shunt, heart cath to balloon his pulmonary artery, or open heart surgery for hopefully a full repair. We should know by the end of the today (Tuesday). It seems that they don't believe he is a good candidate for the shunt as it can cause the oxygen levels to go too high (in the 90s) and can lead to other serious problems before the full repair (and his oxygen levels vary so widely throughout the day now that it could push him too high). At the moment, I am praying for the heart cath. I just don't think I am ready for our 4 week old to go in for open heart surgery. We were told 3 weeks ago that he really needs to be 15 pounds before that happens. Right now, he is just 9 pounds 3 ounces.

As of this morning, we are waiting...still waiting...waiting on the cardiologist and the surgeon to discuss what they think is best.