Praying for Breath
Updated: May 18, 2019
Job 12:10 In his hand is the life of every living thing and the breath of all mankind.
Dear Friends, we are so grateful for your labor in prayer for us. The Lord has filled our days with so much grace and the outpouring of your support and encouragement has truly been a balm. What a precious gift!
Here are the headlines:
Jack has had two major surgeries in his short life; first to address a bowel perforation and a second to address a hole in his heart. The days after Jack's heart surgery have been pretty erratic. One day he's stable and the next he seems to be declining. But the overall trend has been ever so slightly upward and we are deeply grateful for that. It appears that Jack's heart and body have responded well post-surgery.
Every day we get briefed by Jack's medical team and the first part of today's report was good news relating to Jack's gut. They believe that Jack's bowels have healed from the perforation and resulting surgery, and therefore he should be able to resume taking a little breast milk via a q-tip. If his system does well with that, then a follow-up surgery may not be needed and the suction tube in his stomach can be removed. We are praying to that end.
The second half of our brief today outlined what is likely the first of many difficult decisions to come. Jack has been on a respirator now for close to 4 weeks. Every time the machine helps him breathe, he takes a step away from ever being able to breathe normally on his own. This is due to trauma induced by the machine itself, as well as the unnatural pressures imposed on the lungs and diaphragm. The threshold of no return is 2-4 weeks so we’re right in that crucial window.
The doctors have attempted to extubate him twice. The first time just a few hours after he arrived at Loma Linda Children's Hospital, and again last week. Both attempts failed. Although last week's extubation was successful at first, Jack got tired after 12 hours and had to be intubated again. So we’re at an impasse. He needs the machine to breathe, but the longer he’s on the machine the less likely he’ll be able to live without it.
The only option we've been given at this point is to administer an anti-inflammatory steroid called Dexamethasone which will all but ensure the success of Jack's lungs off the respirator. But there's a pretty serious catch. This drug was widely used in neonatology up until 20 years ago when research revealed that premature infants who were treated with Dexamethasone ended up with very severe side effects later in life. The dose that Jack would be getting is greatly reduced from the protocols of 20 years ago but the risk is still very real. This is a last-resort option. We will be meeting with Jack's doctors very soon to determine the way forward.
LIVING IN REDLANDS
Thanks to the diligence of our dear friend Logan Carr (affectionately known as Auntie Lo to our girls), and the wonderful help of family and friends, we were able to secure an apartment in Redlands just 10 minutes from Jack's NICU. Since our home in Santa Clarita is over 100 miles and almost 2 hours away we are very grateful to have a comfortable place to live locally so we can attend to Jack daily. We were able to move in very quickly thanks to the kindness and generosity of Anchor Bible Church in Redlands, pastored by Todd Barnett, who jumped into action when they heard of our situation and offered to furnish our apartment. An incredible, unexpected provision.
...for wisdom. We've been blessed with first class care at Loma Linda Children's Hospital. Many of Jack's doctors are world-renowned. Pray for sound counsel and decision making on these issues that have lifelong implications for Jack.
...for the financial burden. My income is primarily contract based and I haven't been able to work for about month because of how turbulent our situation has been. The associated costs of Jack's care and relocating to Redlands have been considerable. We are so grateful for all who have helped us financially!
...that we will get settled in Redlands. We left our home in Santa Clarita the day before Thanksgiving and except for a couple of quick trips back for supplies we haven't returned. The challenges of trying to get settled into an apartment with our sweet girls (at Christmas) in addition to the difficulties of Jack's situation have not been easy. We are eager to find some sense of rhythm and a new norm for our family as long as we're here — potentially for the next several months.
Lam. 3:22-23 The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.