A long, horrible day

The good news is that Riley does not have a chest tube--yet. The bad news is that he has endured a horrible amount of pain and frustration in an attempt to get an IV line put in. He needs an IV line put in to give him massive amounts of diuretics because he has at least 150 milliliters of fluid under his lungs. The doctors are hoping that they can reduce the fluid with the directs and limited fluid intake. The is going to take time. The alternative was a chest tube, which can have faster results, but it much more intense because he would need a heavy sedation to have it put in.

The day started with labored breathing. He ended up in the ER at Redwood City. I would not let them do any blood work. I know he is a tough kid to get an line in with his tiny veins, so I let them try once and only once to get and IV started. They told me that they would not transport him without an IV. It was unsuccessful, so we dropped it. He did get two giant shots in his leg--big doses of antibiotics--just in case it is pneumonia. They did not need an IV to transport him, which was nice. The nurse in RWC was very dumb and she told me that if his oxygen saturation went below 92 percent (which is his baseline), that he would get brain damage! I told her that wasn't true and that she shouldn't talk about things like that with parents when she clearly doesn't know what she's talking about. I complained about this to the ER doctor and to Dr. Tarnoff, who agreed that she was dumb.

The ride into UCSF was easy and the team was top-notch. As soon as they arrived at RWC, things got much calmer. Riley is normal to them.

Once he was up in 7-North, they needed to get an IV started. They tried his wrist, his arm, his hand, his other hand, his foot. And it wasn't like they just tried to put it in and when it didn't work, they'd back out. Oh no. They would back up a bit and turn the needle and jam it in another direction. And again. And again. At this point, I became the mother from Hell and I started shouting at them and telling them to stop. Riley was hysterical and gagging from shouting. It was horrible. I'm not sorry for yelling at them, even if they are trying their hardest. They should try even harder. I decided to leave and get Carter home. I'm sure the hospital staff was glad I was gone when they came back to stick him some more. Ken said they tried again in his arm and then ended up stitching an IV into a vein in his groin after the arm attempt failed. Apparently Riley was so tired that he just kept repeating that he was tired and wanted to sleep.

As for the fluid, they don't think it's pneumonia because there wasn't any crackling sounds when they listened to his chest. So the fluid must mostly be under his lungs. Hopefully, the diuretics will start shrinking those pockets. We will also have that pesky, hard-to-schedule cardiac MRI to look for obstructions. If needed, a cath will also be done to hopefully fix any blockage.

This is strange. When they weighed him, he weighed 41 pounds. This is up more than three pounds from about a week ago--if their scale is accurate, which I imagine it is. With all the fluid under his lungs and all the puffiness, could he really have three pounds of fluid in his tissue? Ken and I have been talking about how his eyelids have even seemed puffy to us.

Finally, once I got home I was putting Carter to bed when I heard a crash somewhere in the house. It was very odd, I'm at my wits-end, and I'm exhausted. So I did the only logical thing I could thing of and I called 911. They were here within 10 minutes while I was on the phone with the station. They did an outside and inside check and everything was clear and the house is totally locked. I felt silly, but it was weird to hear that loud crash. They did tell me that there are a bunch of teens out on a deck on a neighbors backyard. That was probably it, but I'm too exhausted. That also explains why this post is probably so out of order and confusing.

*This was posted by Suzanne, not Ken as it indicates on the blog. Ken stayed overnight with Riley at the hospital.