Day 40

Jen & I had the opportunity to spend a few hours with R this afternoon. The past week had shown a great deal of progress and improvement, but today was a reminder that he still is a very sick boy.

We were enjoying our time in the room with R when, during a breathing treatment, his heart rate suddenly shot up to 220 beats per minute. Soon after, his blood pressure began to fall. There was no obvious reason for this to be happening, but the staff (God bless them all) went to work. Within a few minutes, the room began to fill with people - the nurse, respiratory therapist, resident, fellow (on the phone), lead nurse, someone charting all that was going on, EKG technician, x-ray technician, surgery transplant liaison and attending physician - Dr. Grant (she is awesome) all working, diagnosing and praying (Jen & I did the last part). For the next 15 - 20 minutes, R's heart rate continued to be well over 200+ beats per minute and his blood pressure struggled to stay above 60's/40's. During this time, R stayed awake, alert, responsive and pink - obviously all good signs.

After about 30 minutes, some fluids and medication, R began to stabilize and the attending explained to us that all of the excitement was attributed to a combination of factors: an albuterol treatment for breathing, perhaps a bit dehydrated and low levels of amiodarone (which keeps his heart rate in check).

Keep in mind that just prior to this 30 minutes of excitement, Jen & I had been having a nice quiet time in the room. As the commotion began, we held our ground in the corner of the room with a look of "what in the world is going on" on our faces. The nurse was good to encourage us a few times during this ordeal that all was under control and not to get too worried. I am quite certain that our "deer in the headlights" look on our face (with a mask on no less) told her that we were beyond worried. After everything calmed down at 4 pm, R had stabilized, most people had left and Jen & I were ready for another valium prescription and, once again, we didn't get one.

On a serious note, we are thankful for all of the progress R has shown for the past week. Today is not a setback, just a reminder of how fragile he is. His biggest challenge right now is his kidneys. It is difficult to balance his fluids when his kidneys do not work and he is on dialysis. He will spend the night off of dialysis, so we are going to pray tonight for his kidneys to begin working and pee!

Thank you for joining with us this evening and praying for him. We will update you tomorrow.