Waiting for the doctors: Day 3

The last two days have been both eventful and boring. Eventful in that we have learned a lot, boring in that there's not a lot for us to do. Mostly, we have been rejoicing at having Nong Pat to coo at.

Saturday morning I got paged at about 9 AM - the team wanted to install a PICC - sort of like an IV, except they run a line from an arm or a leg into a vein, and feed the line deep into the cardiovascular system. It isn't easily pulled out, and it delivers drugs and fluids deep into the system. They had been trying to install a second IV both at the UW and at Children's, but without success - Nong Pat's veins are very small and fragile. He already had several small pokes on his hands and feet, and the thought of one that would last a long time had strong appeal. They installed the PICC in his foot, and have been feeding him intravenously through it. When I was allowed back in (They didn't want me there for the PICC installation - I assumed it's a sterile procedure, what with all of that tubing going into his veins and stuff) Pat was under a little plastic tent. They had him in a low oxygen environment to help his circulation. It seems counter intuitive to me, but everyone was quite matter of fact about it. Fortunately, within a few hours they decided it wasn't needed.

The drug that is keeping him alive - Prostiglandin - has some side effects. It makes Pat cranky, and gives him a slight temperature. His crankiness goes away when he's held, so we make the painful sacrifice of holding and cuddling our baby every chance we get. It's hard, but we're willing to make the sacrifice. ;-)

We don't have the chance to hold him much - he's all tied into several tubes and wires, so moving him his a bit of a production. When Pui and I went to dinner, his Grandma Milly stayed and held her grandson for about 45 minutes. Eventually, Pui and I went home to get some sleep. I planned to write in the blog, but it was late and I was just too tired.

This morning we arrived just too late for rounds, but there wasn't much new to learn. The main thing we learned was that Pat's bilirubin was a little high, so he had to spend most of the day under the bilirubin lamp, wearing his little designer eye shades. (What is bilirubin? It has to do with red blood cell metabolism and is what makes jaundice and some bruises yellow. I hear.) The bilirubin light is a blue light that they put over him that somehow helps lower his bilirubin level. If he was a girl, would they use a pink light? (Just kidding). But it meant that we didn't get much of a chance to hold him today. Pui got two chances, when they were changing him and taking care of his connections and IVs. The nurse was very kind to let her hold him those times.

It appears that they are keeping Pat a little dehydrated, so that his heart has an easier time of it. He also is not allowed to eat, which is why he is being fed intravenously. That is apparently standard for Congenital Heart babies. He is slightly blue in his feet, but otherwise appears to be doing quite well. But that isn't helping him get rid of his bilirubin. They also put him on a medicine that helps his circulation, so hopefully we won't have to go back into the tent.

One thing the last two days has made clear is that Pat really does need surgery. They are working hard to keep him stable and thriving, but it clearly isn't easy - or sustainable.

My father had come down with a cold in the morning, so he didn't go to the hospital today. But my sister Katy did, and she was a huge help. She was with Pat for something like three hours while Pui and I were able to eat, nap, take care of nursing and other needs.

Pui decided to stay at the hospital overnight, and I came home to gather food, clean clothes, and work on the blog. A Long day.

Tomorrow, Pat's case will go before the surgical and cardiological team. We'll learn what they decide the best course of action will be later in the morning or early afternoon. The uncertainty will end, and then the waiting for the surgery will begin.