Journal entry by Christina Kromminga —
We have a couple of things to do before discharge and now have a goal timeline!
ENT wants to take another look in Lucas’s airway on Monday which will be 10 days after his last broncoscopy. They will repeat the sedated broncoscopy and repeat steroid injection and or balloon dilation as needed. Depending on what he ends up needing in the OR, he will recover as needed in the PICU.
The doctors also have suggested placing a G tube during the surgery on Monday as well. Lucas’s platelets and blood count is actually really good right now since he is on immunotherapy rather than traditional chemo. This will allow him to recover well. A G tube in Lucas’s stomach will be easier to manage at home instead of an NG tube. The one he has now is easily yanked out, and requires X-rays to confirm placement. With the state of Lucas’s airway, they think that eating will take a long time to come back to him so a G Tube will help provide nutrition as well as be a way to give medications even after he’s mastered eating again.
Finally, we will have his care conference after ENT gathers information from his Broncoscopy, and Dr. Gamis is back in town. We hope that the interventions will help and we get a plan to take and keep Lucas home! The goal is to be home by the end of next week.
This week as he has progressed with decreased airway sounds and retractions, his oxygen has started dipping while he sleeps. He has not needed more support than we can provide at home so that is a good thing.
Thank you for keeping Lucas and our family in your prayers.
Love,
The Kromminga’s