8/17/06-Pulmonology Clinic

We were at LBCH all day today. Cedie had a 9:30 appt with her pulmonologist. He was impressed with how well she has been doing. He did have a couple concerns though. They weighed and measured her and there has been no change since we were there in the beginning of June. Also, he believes that her kidney and spleen are too large. He ordered a nutritian consult for the weight problem. He thinks the kidney and spleen are results from a bad heart (the cardiologist disagrees and says she doesn't have a very bad heart).

The dietician is hesitant to increase her feeds because Cedie is on the high side of the curve for her height. She is going to discuss the matter with our pulmonologist and then get back with us on the decision. She also suggested we talk to an endocronologist about the growth issue- we already have and he wants to concentrate on her thyroid issues at this point because at her age brain development is more crutial.

On a more positive note, he gave us the green light to increase CPAP trials. Over the next 6 weeks, our goal is to get her to do CPAP all day (12 hours) and be on the vent rate at night. We will then meet with him again and discuss bringing down her PEEP and attempting trach trials (being completely off the vent).

We also had to go by the lab and get some blood work drawn. Cedie ofcourse hated that but she got over it so quickly. Such a brave girl!

Before we left we stopped by TCU and saw some of our old friends. Everyone was happy to see her and remarked on how beautiful she is becoming. They told our nurse how "scary" Cedie used to be and how she has come such a long way. Everyone is so proud of her progress.