Just when things were looking so good, we got knocked down again.
Friday, we were supposed to leave Cincinnati by 11am to head home after his treatment. However, he fainted during photophoresis and the nurse pressed the staff emergency button. I have never seen so many doctors and nurses gather in one room before. Aaron was completely white with plummeting blood pressures. He recovered well after some time. I was not overly concerned, but they took blood cultures and gave him an antibiotic for good measure. When finally hit the road at 2:30 to go home to Orlando.
Just before getting to Atlanta, we were stopped on the interstate due to an accident for two hours. During that time, my car decides to rebel on us and stops working. Michael pulled over on the side of the road at 9pm and checks it out. Thankfully, he got it working well enough to continue driving.
The next morning we got a call at 9am from Aaron's doctor saying that the blood cultures are growing a bacteria and that we need to head straight to the ED for more testing. For the 6 hours it took us to drive home to the local hospital, I was a mess. Panic, fear, sadness, anger... Thankfully I had an audiobook to listen to for some distraction.
Aaron is now admitted to Nemours hospital where he is fighting a line infection that has spread to his blood stream and a low hemoglobin. He may require a blood transfusion in the next day or two if things don't straighten out.
So much for my long awaited one day off every two weeks. The good news amongst all the bad is that the doctor says of all the infections he could get, this one is the best. It is very responsive to antibiotics. Hopefully the infection clears soon. Otherwise, he will undergo surgery to have his lines removed.
I think this is the scariest thing that has happened (accept when he almost died of PCP pneumonia). The problem is the potential of a blood infection to turn to septic shock is terrifying. Unfortunately, I do not have enough energy to worry as much as I should.
I must stress that Aaron is truly a gift from God. He is so happy and funny and loving. NOTHING gets him down. As long as he has his trains and his iPad, he could be anywhere in the world. He laughs and plays. He does not scream or get angry. No matter what life throws our way, this kid is happy and his strength pulls me through.