The Hard Road

For some reason the easy road seems constantly under construction for us.  The detours we have needed to take from "normal" with Jordan have been challenging and at times confusing until I remind myself that it is the journey and not the destination that makes the drive worth taking.  The past 8 months have opened my eyes to so much beauty and scenery I never knew existed in life, that it has been worth every moment.  And I hope it is not over just yet.

The easy road today would have been an infusion for Jordan that was uneventful, as all the doctors expected.  The Jordan road was an infusion that at only 1/3 complete presumably gave such a significant amount of T-cells trained for the Adenovirus that they shut his body down.  These cells entered through the lungs and attacked the infection in the lungs and kidney so aggressively, Jordan had a full systemic reaction;  his blood pressure dropped, the right side of his heart slowed down, and he stopped breathing in his mother's arms.  The immunologist said it is the fastest reaction she has ever seen.

I was taking a nap with Aaron when I received the call from the doctor to come quickly to the hospital.  I rushed over and arrived to a room full of medical staff working furiously to give Jordan enough medications and oxygen to keep his body functioning.  We were told he wouldn't pull through.

Over the next 6 hours we watched minute by minute as the medical team gave Jordan one medication after another--one to raise his blood pressure, another to open up his lungs, another for pain, a steroid to help diminish the immune system response, saline solution, more of the first, then more pain medication, and on and on. The bed was full of syringes and fluids and I wonder how the team kept track of it all.

At the same time the respiratory team worked furiously to keep Jordan breathing, first with a ventilator, then by hand, then back on a ventilator, then onto an oscillator to help literally shake oxygen into his lungs, then back the ventilator again.  With such limited breathing, Jordan had built up too much CO2 in his lungs, which changes the Ph balance in his body and can ultimately lead to heart failure if not controlled. The respiratory team needed to keep him breathing while helping him release the extra CO2 and return his body to a normal Ph level of 7.4.

Without any significant improvement after several hours, the doctors again told us to prepare for the worst and started asking us to make decisions no parent should have to make for any child--such as whether we would want them to give him CPR if his heart stopped.  We did our best to respond.  I called Heidi's parents and then mine and told them they needed to be here.

The doctors continued to discuss and work and I could see they were running out of options.  They gave Jordan a paralytic to paralyze his lungs completely so he wouldn't fight the respirator and Jordan hung on.  Finally they were able to stabilize him enough to begin running tests again, which they will continue into the night, and to let the medical team transition and the first team get some sleep.  Heidi and I took a moment to go into a quite room and say a prayer to let the Lord know we wanted what is best for Jordan.  We both felt a great sense of peace in response.

Jordan remains in a very compromised place and he has not moved since the reaction began.  If his Ph levels don't return to normal, we are told he won't move again.  But we are also told that with all of this happening, his blood has remained fully oxygenated and his other organs and vitals have remained strong. His pulse has stabilized, his blood sugar levels are returning to normal and Jordan is again beating the odds every minute he hangs on.  He is sustained by prayers and faith.

I don't know what tomorrow holds, but what I do know is that I received a promise Jordan would be okay and so would we.  I will leave it up to the Lord to decide what that means.