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

8:13 PM

Another Saturday Update

We have 3 departments concsulting with each other on Sam's case: Pulmonary, Infectious Disease, and Immunology. We feel like we have a great team of doctors and that they are finally figuring things out.
The latest:
-The infectious disease doctor strongly believes that his current immune-compromised condition was caused by his treatment from his last visit to the hospital; by being malnourished and getting a strong steroid treatment.
-The preliminary test for cytomegalovirus has come back negative, but the final test is still pending.
-Sam's x-ray of this morning showed improved function of the lungs.
-He has been able to take several bottles today along with his feeding tube. They even turned it off for 3 hours today and let him bottle feed. He did well, so they will most likely keep moving in that direction tomorrow.
-He lost his 2nd to last IV this morning. He has been poked so much that he has little pricks all over his hands, arms and feet. (along with the bruising that comes with each failed attempt.) If he looses this one, they will either leave it out or put in a central line, depending on what treatments he still needs.

Over all he is looking good. He smiles and even tries to laugh. He is capturing the nurses hearts with his bright eyes and flirty smile.

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