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

8:37 AM

Sunday update

Dr. Wheeler (pulmonary specialist) came in today and cautioned us about our surging optimism. He made a good point: the patient presents well and obviously feels better, but the xray and test results still indicate there is a problem. The xray he said is way outside the range of "normal" baby pneumonia. Since the test results are only ruling things out, we have no clear answer on what is going on.

The bronchoscopy is still very much on the table, if not while still hospitalized, maybe in the following weeks in the clinic if a cause is still not clear. He indicated they'll run at least 10 tests from the bronch samples. Also a possibility is a lung biopsy.

Long story short, something more complicated and less obvious is still going on.

They plan to do a swallow study before we're discharged to see if the food goes down the right path, and if there's any reflux.

We are not talking about discharge yet, and since he's still on oxygen (70%), we're still at least a couple of days away...

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