It's looking like a longer stay...

Kaleb's looking well. A friend from church watched the kids all day yesterday so I could have an extended time with our boy. His fever comes and goes, but at this point they've run all the tests and have concluded he must have just caught a virus that's not on the testing list.

Things took a sudden turn yesterday afternoon when I talked with Kaleb's team regarding his GJ surgery.

As a refresher, Kaleb needs a GJ surgery (the more permanent feeding port in his belly) so that they can reduce the volume of his aspiration of spit-ups, send a scope down into his lungs to investigate if there’s any anatomical reason he’s not getting enough oxygen, as well as fix his tongue tie that keeps him from being able to hold his pacifier in his mouth (his one passion in life). But surgeries typically won’t happen until 4-6 weeks after a viral illness. Since Kaleb has had at least 4 viruses since January, we all have been struggling to figure out how we were going to get this surgery on the books.

However, after many discussions, the team decided that given Kaleb's proclivity for pulling out his tube and catching viruses, their current (tentative) plan is to move his GJ surgery up to the next week or two (basically, as soon as the surgery team will let them) and keep him inpatient at the hospital until then. They also installed an awful “bridle” to his NJ tube to keep him from pulling it out until then—he takes after his father in being very determined (case in point, as I’ve been writing this I got an update from the nurse that he managed to cough up the other end of his feeding tube last night and this morning during an echo he pulled it out yet again!).

I'm kind of relieved to know we have a plan and it involves getting his surgery done sooner rather than later, as the chaos of him being in and out of the hospital was proving to be a disorienting challenge and we were feeling the pressure of living on the edge of crisis all the time (if he pulled his tube out of his nose) and trying to keep him virus free long enough for them to schedule a surgery.

However, this decision means we're back to the double-life limbo between home and hospital, each day looking wildly different, seeking to care for two increasingly active toddlers at home and one precious baby in the hospital. My brain goes AWOL when Kaleb is not home. And River's emotions run high when her "baby" isn't here. It's painful because it means we have to wait a long while longer before we have him home.

BUT it's a sacrifice we're willing to make if it means he'll be done with his surgery within the next few weeks. Here's what they're planning on doing (subject to change, of course):

• The GI team will install a GJ tube into his abdomen

• The ENT will fix his massive tongue tie which will enable him to finally keep his pacifier in his mouth (really the thing he wants most in life right now)

• The Pulmonary team will send a three-way scope down his throat to investigate if there's anything going on anatomically in Kaleb's lungs to keep him oxygen dependent

• The anesthesia team will oversee his anesthesia (going under general anesthesia is high risk for cardiac patients)

Would you join us in praying:

• Pray for Kaleb's surgery to be scheduled SOON and that all the necessary teams would be on board (they would be going against normal policy to do surgery on him so close after a viral illness) and that he would remain healthy until then.

• Pray for wisdom and good communication for Todd and I in these next few weeks as we navigate lots of moving parts every day.

• Pray for peace and joy to reign in our home during these days when tensions run high.

• Pray for me to keep my eyes fixed on the Lord and His goodness when my heart aches.

• Pray for Rebekah, the United Methodist multi-faith chaplain who dropped in today whom I had a long conversation with. She was particularly intrigued when I mentioned how grateful I was that God has been teaching me how to live by truth instead of by my feelings. I got to explain the importance of holding the absolute truth of God’s Word as more authoritative than how we feel, as well as share many Scriptures with her.

• Please continue to pray for opportunities to be a light for Christ at Boston Children’s!