The nurses and respiratory therapists here not only are taking wonderful care of Jaxon but they also go out of their way to incorporate Jaxon’s likes which really helps others see his personality. Just like his dressing from his chest from surgery, they made sure to add a Harry Potter design.

We really are in the best place we can be.

Yesterday was a restless day for Jaxon. His white blood cell count, and lactate were up. They did some imaging and labs and determined he has pneumonia and is septic. There also is a new blood clot in his lungs. He was having issues with being uncomfortable and agitated.

So, they had to increase the RVAD to help with getting the blood to lungs, his lactate is now 2 and WBC is down to 29 (still high). He no longer is on the paralytic medication that they put him on last night. The sedation medication is going but they are keeping him sleepy and not fully sedated. Yesterday, he could answer yes/no questions and occasionally would give a shrug to a question.

He is VERY peaceful today.

Things are moving slower now because of the pneumonia and sepsis. So as of now, we wait. Hopefully once the pneumonia and sepsis clears, they can continue to slowly take him off supports like the RVAD and ventilator provided his body tolerates it. Only time will tell.

Please continue to pray for our sweet boy. He continues to need these every day.

Love, Niki & Adam