waiting patiently

No real changes to Jo's status going into the evening.  We did visit with his Dr. again and she was encouraged by his progress overall.  While she didn't directly say the tracheotomy wasn't needed she suggested that the areas they want to see stability seem to be functioning well.  She also discussed the advantages to summer weather in preventing colds.  Ultimately a cold could mean a trip back to the hospital for a trach if we decide not to do it.  One more full day of rest and healing, Jo will show us what is needed.

We also discussed the possibility of going home without the surgery to replace Jo's missing skull piece.   The minimum time they would like to wait is a month before conducting the replacement surgery, another procedure with a timeline of TBD.  One thing we didn't realize, although seems obvious now, is that following that surgery Jo will be back in PICU for a few days to ensure everything went well.  

The G tube is working great and Alex and I have to attend a class on Tuesday to learn more details about how it works, cleaning, adjustments, and replacements.  The first swap of the device is done on an out patient basis at the original surgeon's office.  In addition Jo's feeding schedule is to be reviewed through regular appointments with a GI Dr.  Fortunately he has an office much closer to home, but we can expect this appointments for the foreseeable future to ensure everything is functioning well.  (Side note here: I have a really hard time saying Jo's feeding schedule?  Obviously he can't sit down for a meal but I can't find a suitable way to describe the details about his nutritional future.  Don't judge me, I know he's not on a feeding schedule, LOL.)

So our immediate future looks like we will continue blazing a trail to Tacoma for awhile even after Jo is discharged.  That date could be some time during the first week in June.  As you would expect  we are beyond happy to discuss Jo leaving the hospital, but imagine that feeling when they tell you to take your newborn home, times a 1000 on the panic level.

Our house is being prepped for our arrival by a group of angels sent from God,  we don't even know where to begin.  We are experiencing our own personal extreme home makeover and our genuinely overwhelmed by the time, effort, and personal expense being donated to our family.   We are keeping the kids out of the house for at least another week as the house is remodeled.  We have never felt so humbled and loved.  Thank you all so much.

Alex and I are sitting bedside as Jo rests peacefully.  Every day we see some improvement,  we've grown to look forward to what tomorrow holds rather than fear it.  Our new favorite phrases are "one day at a time" and of course "biscuits and gravy".

Jojobinks mommy and daddy are here, we will see your eyes soon.  God is with you, guiding you on this journey, follow him back to us.  We love you to the moon and back sweet angel.