Alex and Maddy

Alex and Maddy

Friday, August 15, 2008

We are doing better! We are anticipatin​g being discharged tomorrow. Alex's belly is SLOWLY coming around. We are up to a little less then an ounce an hour of half strength formula.

As of yesterday, Dr. Pacheco did not want to do IVIG infusion this illness. Alex got a few new spots yesterday which is concerning after 13 days of a strong IV antibiotic so we will see if that holds true today. The only other news from innumology is that he lost all of his titers or antibodies to his pneumoccal vaccine for a second time. This is oncerning because it means we really do have immune problems.

We met with GI yesterday. As most of you know I have really struggled with the GI team here. I won't go into details yet b/c I am still figuring everything out, but the surgery is on hold for right now. In the meantime, we are doing some more testing to be sure that Alex's stomach and chest pain is definitely caused from GI issues and not something we are missing.

We had an EKG and an echocardiog​ram of his heart this morning. No results yet.

We are expecting to meet with Dr. Koenig, Dr. Pacheco (immunology​), and an Infectious disease doc today. Once that all happens and we get Alex's feeds going better we will be out of here.

Thanks for all the prayers and love. As always, Alex has been a real trooper.


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