Disappointing Appointments

Olivia had a busy couple of days with appointments both yesterday and today. Yesterday we saw the Nephrologist. That appointment was rather disappointing. It began with me goofing on the appointment time. I thought the appointment was at 10:00 but it wasn’t until 10:40. At 10:30 I asked if the renal clinic was running behind, which is when they told me that Olivia’s appointment wasn’t until 10:40. I asked again later, probably around 10:50, and was told that they still had to take the 10:00 appointment back. They finally took us back for check-in at 11:00, but then back to the waiting room we went. At about 11:45 they took us to an exam room, where we waited until after 12:30 to see the doctor. The doctor then was slightly unpleasant to deal with. Olivia’s geneticist said that we need to be checking her blood pressure on her leg, because her upper arm is just too small, but the nephrologist strongly disagrees with that. She acted angry with me because the geneticist hadn’t talked to her about that. She huffed at me several times telling me she “just didn’t know what to even do with these blood pressures”, referring to the readings we’ve taken at home. By that point I was seriously aggravated and told her that this was really frustrating to me that we are being told different things by different doctors and then have to make the decision of which advice to follow. We then end up looking like the bad guys with whichever doctor’s advice we don’t follow. I told her that I wished we could have a meeting with all of Olivia’s doctors at the same time, and get some of these issues resolved! After that, she was much nicer to me and said she would look into whether there were norms for taking blood pressures on the legs for kids with achondroplasia. We have to go back for a follow-up and another renal ultrasound in June, and next week for a follow-up echocardiogram.

Today Olivia saw the pulmonologist. She was less than pleased with being back at the doctor’s office again. I had hopes of turning her oxygen down, but no such luck. Her oxygen levels were not very good. On the plus side, her numbers were good enough that we didn’t have to increase the oxygen. While there I also met with the nutritionist that works with the pulmonary team. She is awesome, and we talked for a long time about Olivia’s feeding and vomiting issues. She then talked to GI who is going to get back to me on Monday about possibly doing a pH probe study. That is where they stick a probe, about the size of the feeding tube that she used to have in her nose, up her nose and down her esophagus. It will help them to determine the severity of her reflux. This is such a concern because while she was taking almost 60% orally per day when she came home in June, she now averages about 5% orally per day. She is also vomiting, not spitting up, but vomiting. She dry heaves and turns red in the face and then projectile vomits several times each day, which is hindering her weight gain. We might not be able to solve her issues by doing the pH probe study, but it will at the very least be one more thing to rule out.

Next week Olivia will see our primary care doctor, the GI doctor, and also have the follow-up echo that I mentioned above. She’s one busy little girl these days!