Out of the PICU

(Ethen during physical therapy yesterday)

(Legos with Mommy)

UPDATE

     Ethen has done well since extubation. By Wednesday, the PICU team had weaned Ethen's oxygen and pain medication enough that they felt comfortable releasing him to the Heme/Onc floor's care. As early as Tuesday we began to see Ethen's feisty personality return. What a huge blessing to see Ethen return to his silly self!
     In terms of his medical progress, Ethen's oxygen is now down to room air (21%) at 2 liters/minute. Yesterday the oxygen was weaned from 8 liters/minute to 3 liters/minute throughout the day; Ethen adjusted well. We will continue to wean the oxygen flow gradually. Another matter we're watching is Ethen's weight. He lost 2-3 pounds over the past couple weeks. Thankfully we were able to get him some nutrition while in the PICU, which kept his digestive tract moving. Yesterday and today Ethen started eating and drinking. Although he has done well with oral intake, he needs to pass a "swallow test" with the speech therapist present. This has been a battle for the past day and a half. Ethen doesn't quite understand that he must perform this task to be released to eat and drink as he pleases. The tests have been badly timed so we don't blame him for not wanting to comply; he wants to do what he wants when he wants. Hopefully the therapist can catch him in the act.
     We would like to thank you all who have prayed for Ethen over the past couple weeks. Honestly, we thought we might lose him at different points while in the PICU. We thank the Lord for preserving Ethen's life. Please pray that Ethen continues to recover well. Pray also that he will pass the swallow test. Another request, which is slightly different than usual, is that you would pray that we have alertness and boldness to share the hope of God's kingdom here in the hospital. We've always sought openness concerning our hope, but I think having been in the PICU on the verge of loss has really heightened our awareness of the pain all around in the hospital.

FURTHER TREATMENT

     Looking forward, we decided today with Ethen's oncologist that we will not do any further antibody treatment. Although we think the treatment is important for reducing relapse recurrence, it is possible that another round of antibody would kill Ethen. It's obviously not worth the risk. We believe medical care has done a lot to heal Ethen, but ultimately we believe the Lord has preserved Ethen by his grace. Life is always uncertain, but we are walking in the belief that God is he who gives life and breath and all things (Acts 17:25). We hope this means lifelong remission for Ethen.