Long Beach 9/20

Today is the second day in a row that Kevin and I changed a trach!  They change them daily here, instead of weekly at Omaha...so there is more opportunity to practice.  We probably won't keep this schedule up at home...but knowing we could because it's no big deal is awesome.  Just kidding, it's still a very big deal!  But it is getting easier, just like they said it would!
Annelise has been seizure free since before we got here!  So thankful for that.  They are trying to wean her off of phenobarbital, because the keppra seems to be doing a good job, and the phenobarb level in her blood just keeps going down to a level where we've seen her have seizures before, prior to the Keppra starting.
There are tests out to find out how serious her slightly low thyroid level is.  The doctor here who doesn't have a lovely bedside manner but might still have some good ideas, thinks that getting her thyroid level within normal could help her a lot.
We decided to stick with Omaha's recommendation about her kidneys for now, but keep communication open with room to be convinced to follow the current Long Beach recommendation if they can answer our questions and we decide their plan is best.
For her breathing..she is now on an O2 ring during the day, and the ventilator with CPAP mode at night.  So far so good...except for all the puking.  She has been gagging and puking daily, and I'm more inclined to think it has to do with the secretions/goobers than with reflux... but we're considering both. 
Our palliative care person is phenomenal here, and such a source of support for us by listening, and helping the communication between our specialists and us.  She also loves Jesus, and it's easy to see!
Prayer requests are for Annelise to thrive here, and that her team would find the best way for her to breathe during the day and night.
For her seizures to stay away, and for the puking to be gone too!  Secret option number two, is that if we have to deal with puke, like every other parent... That it at least just go all over her blankets and baby clothes... And stay out of her lungs forever!
Self care is a little trickier these days since being home.  Just for a limited time though.  There's really nowhere I want to be other than here right now.  Kevin is an amazing Dad, and I'm so sad to lose him to work at the end of the month!! His job has been so flexible with him taking time off though.  Thankful that God led him to accept the position with this group last year when he had to change groups.  They have been so amazing, I know I have to share him again with his workplace someday 😭
Annelise is sleeping well now, so I'm going to snooze myself!  Thank you all for praying, loving us, and for understanding that we need some time before we get more visitors.  I keep telling myself it won't always be like this! And we can do it!