BK Virus results are in!
The results of the BK virus are in . . . They were POSITIVE in the urine ???????? ????They called us to the hospital to explain what this means and for a treatment plan. They also ordered the blood test to see if the virus has made it into his bloodstream. This is NOT the news we wanted to hear as this adds a whole new level of complications and risks to his already complicated journey. His physician mentioned that he has had two patients in the past with this virus but it is more common in kidney transplant patients and it didn’t sound overly positive. The reason it is so risky for transplant patients is because the only way to try to get the flare up to go down is to lower his immunosuppressant drugs which is what keeps his heart stable.
Many of you that follow Noah know he is already in a delegate balance with his immunosuppressants because they are damaging his liver. We went through a risky reduction of immunosuppressants last year due to this and had our first rejection scare on his biopsy.
Unfortunately Noah’s bladder and kidney will need relief so they must lower his immunosuppressants immediately. We were told to make that change today. They will be adding two more medications to his regimen making Noah’s daily medications 19 with an additional 4 as needed.
We are asking for your thoughts and prayers. Pray for our medical teams for wisdom and clarity in their decisions in his care. Pray for us as we deal with these diagnoses and rigorous medical/medication schedules, to stay vigilant for his symptoms, and to keep our fears at bay while trusting in the Lord. Mostly pray for our precious Noah. The amount of pain he must endure and is still mostly a happy playful child is a miracle. We ?? our Brave Noah.