Going home, but the worst is not over

We are taking the hospital up on taking Noah home later this evening. He has had 2 rounds of IV antibiotics which will put a dent in his infections and they are not planning on giving more via IV. We are waiting for a particular test to come back, but we have been told it will be another 2-3 days ????. Noah is still in a lot of discomfort especially when needing to go to the bathroom and the few hours immediately following. We are a “trusted family” and when we can do everything at home that they plan to do here they give us the option. We are grateful because this allows us to not miss an excessive amount of work, Noah doesn’t eat and is not very comfortable at the hospital, his siblings, and our family miss each other when separated.
Prayers needed for symptoms to calm down it is difficult to watch ur child in so much pain. Mostly the concern over the BK virus that they are testing for. We want this to be a NEGATIVE result. This virus is not curable and will pop up at any time especially when his immune system is compromised. This virus particularly preys on transplant recipients they explained. UTI/ bladder infections are very atypical in males which is why they are looking into this virus as Noah had the same symptoms 2 mths ago but was not as severe. If it is positive it is possible for readmission to the hospital, but they will definitely need to change the antibiotics he is on. 
He will be back on Thursday due to a scheduled hospital dental appointment and the hospital only has enough antibiotics to give us for 5 days so we need to pick up the 2nd half then. The only pharmacy that has it all in stock today is over an hour away or again we can wait in the hospital longer (no thanks). He returns next Thursday for routine monthly labs and 8 week heart lab, so he will still be very closely monitored. 
Thank you for your continued support and prayers. Like any illness the first few days are the worst and waiting for results always feels like a lifetime.


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