Ricky update

This morning I got up at 6:30 and Ricky was still asleep. It was all I could do to roust him from bed by 7. This is the boy who usually wakes up at 5:30! I made the decision to keep him home, as he was clearly sick, and was telling me that his chest was tight and everything. :( Meanwhile Andrew took his sweet time getting up, so I canceled both of their buses and showered while Ricky did his breathing treatment. Then we took Andrew to school.

After that, smart thinking mom (thank you very much) took Ricky and myself to get our blood drawn. We both had fasting labs that needed to be done, and neither of us had eaten. We are in different medical groups so we had to go to different labs, but they are in the same medical building so it didn't take too long. Misty was very concerned about us getting poked!

The pediatrician's office is also in that medical complex, so we stopped by there when we finished the labs, at about 9. Oddly, they were not open. I decided to go ahead and take Misty to day care because I figured we'd be doing Ricky's medical stuff most of the day. So as I drove her to day care, I tried calling the pediatrician's office. All morning their recording was still on the weekend recording, which gave the name and number of the doctor who was covering for them on the weekend. Finally in desperation I called the covering doctor. His staff happened to know which doctor was covering for our pediatrician today, and gave me the number.

So after we dropped Misty off, I got ahold of the real covering doctor's office. They were surprised to hear that they were covering! Argh! Anyway, they agreed to see Ricky at 10 and we headed over.

The doctor was nice... An Indian lady. All of the patients coming and going were also Indian (as in from India) and I started to fear that the doctor would not know what to do with a little white boy with cystic fibrosis (which is almost never seen in non-Caucasian people). My fears were allayed when she asked all of the right questions, like about what kind of bacteria he cultures and what we do for treatments and chest percussion and what antibiotics are usually prescribed for him. Clearly she'd had training in a hospital or clinic with CF patients -- I should have known better than to worry!

Anyway, the doctor wasn't sure what to do. She said she'd call Ricky's pediatrician and the pulmonologist to find out what to do, and that someone would call us.

Ricky and I went home. He played DS for about twenty minutes and then the next time I looked over at the couch, he was out cold. He ended up sleeping for over two hours -- very unusual for him. He was clearly feeling crummy. :(

So while Ricky slept I called the CF clinic again. I had tried calling the pediatric CF nurse in the morning and found that she was out until 1:00. Argh. Her message said to have the pediatric pulmonologist on call paged. So at this point I did that, but the operator declined to page the doctor since it was business hours. Argh! Eventually I was transferred to the adult CF coordinator, since at least she was in the office, but she didn't answer and I left a message.

Eventually, thank goodness, the pediatric CF coordinator called me back, having gotten back from her morning meeting. As it happened, Ricky's pulmonologist was the one on call and Mary the nurse paged her. Dr. C said for Ricky to come in tomorrow at 1 for an x-ray and spirometry. Tomorrow! I was kinda frustrated... I mean I had been trying to get help for him all day! But... At least he is going to be seen.

(At some point, our actual pediatrician's office called back finally -- I had left them a message in the morning when no one was answering -- and I kinda grouched at them over them not answering the phone. They said they'd try to get ahold of the pulmonologist too but it ended up not to matter.)

By then it was 1:45 p.m. I woke Ricky up with difficulty. He was very hot and sweaty and groggy and was complaining about his chest being tight again. I took his temperature and he did not have a fever. We got in the car and went to get Misty and Andrew.

We got Misty from day care and Andrew from school and went up to Stanford for Ricky's previously scheduled psychiatry appointment. That went well... Since he has been so stable! I also found out that that clinic takes Medi-Cal, which greatly reassured me. We go back the first week of November.

We got fast food on the way home and then got Ricky going on his treatment. He was slow-moving all evening and at bedtime he was complaining about his chest being tight again -- even after having had all of his breathing treatments.

I'm afraid he'll end up being inpatient after we go in tomorrow. But we'll just have to wait and see. My poor guy!