Update...

Here is a brief status update. Ammon’s breathing became more labored again Tuesday night so they have hooked him back up to the cpap machine and then changed it to the bipap, which he is still on. Tuesday they inserted a GJ tube, which is better than the NJ tube alternative. The NJ would have gone through his nose and into his smaller intestine, but the GJ is able to go through his existing G-tube and down to his smaller intestine. They tried giving him pedialyte at only 2cc per hour, but he has been moved off of that because they don’t feel his system is even ready for that yet (about 30cc equals one ounce). Similar to his first vincristine chemo dose, about two days after his dose on Sunday he has not reacted well and had a very uncomfortable and painful Tuesday night. We’ve hooked him back up to several additional medications that have helped him to relax somewhat, but there is always the concern that his heart rate and breathing will decide to drop off as well (it’s a balancing act). The swelling and liquid by his left lung has improved, but as noted above his overall breathing is still quite labored and his chest xrays Wednesday was not quite as good as Tuesday. Unfortunately, he is experiencing severe swelling and pain in some of his lower regions. They have increased his lasix treatments in an effort to pull that liquid out of the body or back into the membrane. Ammon’s seizures continue to increase and the neurology team continues to explore what to do next. The return of the seizures to this extreme is very disheartening. With his body in this condition the seizures are very painful to him. It's like having a torn muscle and then the seizure makes you involuntarily flex that muscle as hard as you can. I think Ammon was doing better Tuesday at times, and Tuesday night is simply just a reminder that things will continue to change from day to day, and it will likely continue to be slow going for the next while. Because of the additional medications, Ammon slept better last night as is still sleeping on his birthday morning. We are hopeful that his birthday is a day of rest and improvement for him.

The Birthday Gift post below has touched a tender place for many of Ammon's friends, family, and others. Throughout the day, we are excited to hear about and start sharing with Ammon the gifts of time and love that people have been inspired to perform or committed to perform for others. We just wanted to give a brief update post on Ammon's current condition. We'll post more later today.