A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

9:22 PM

Friday

Sam started out well, then struggled a bit in the late morning. The clinic doc came in today while he was down a bit, and our request for a pulmonologist was entertained.

We spent a good portion of the day making calls to get advice and request consults. Both Jim Sidman and Bruce Ferrara from Children's Surgery International (CSI) helped the cause move forward.

Dr. Wheeler (pulmonologist) consulted on the case today, and we really made some good strides from his visit. He prescribed a dose of steroids to try and get the inflammation and irritation down.

Sam was SO alert and fun tonight - for almost two hours he was smiling; almost laughing, and very aware and lucid. His IV was not flushing tonight, it was bent inside him, and he got his 3rd IV tonight, this time in his right foot.

Tomorrow will be a decisive day. Dr. Wheeler has provisionally scheduled a bronchoscopy for 8AM, and will proceed if the morning's xray does not reveal an improvement.

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