First Thank You to all that have either sent food or promised food to come, it is really appreciated.

Good Day although Faith spiked another fever today. Mom and the other nurse were able to coax it down by late afternoon.

She will go into OR tomorrow if her fever doesn’t go back up again and there is a spot. It seems as if we are “on-call” for the OR. If she can’t get in tomorrow we must WAIT UNTIL MONDAY. Please all pray for an early opening and a fever free night and day tomorrow.

I will post updates throughout the day tomorrow once the procedure starts/ends and succeeds (positive thoughts).

Faith is doing well, they have continued to increase sedation as she is able to burn through it at an amazing rate.

She should be going to the OR tomorrow to have the breathing tube removed and ENT will also most likely scope her at the time to take a look at the tissues of the upper airway. Slight fever again today, was fever free for past two days. No signs of infection and all tests thus far are negative.

The long term outlook for right now is if she is able to get off the ventilator tomorrow we are still looking at least one more week of hospitalization afterwards.

One week anniversary of the start of this folly. I think the kids are starting to hit the exhaustion wall, mental health day soon.
Tuesday was an uneventful day, Faith remains on the ventilator and sedated. ENT was by to consult we are still waiting on them.

Gameplan (as of today)
• Remain on ventilator and sedated for 48-hours
• Next attempt at extubation will be in operating room
o They are better equipped to deal with anesthesia and both waking her up and putting her back out again quickly and comfortably.
o They are most ready and able to intubate again if needed (she isn’t easy)
o They are able to use an optical scope to look at the upper-airway to check for visible trauma, swelling, obstruction, anatomy.
o ABSOLUTE best place to be if anything hinkey occurs.

It’s not all about Faith. Jonathan, Abigail & Jessica have been handling this wonderfully. They are forging through day by day taking care of their responsibilities and really stepping up to contribute to the household needs. This all started at the end of Jon’s first week at his new school (ECLC Chatham, NJ). It has made an already difficult process for him harder. He is doing his best to pull it all together.

Everyone has asked what they can do.
1. Prayers for all.
2. Food. Between gas, tolls, city takeout and and takeout for home it’s financially oppressing. It’s also quite unhealthy and boring to eat fast food every day. Some home cooking would be nice, think real simple foods (kids menu stuff).
3. This is the best way to keep everyone updated, phone calls are draining. If we haven’t called please don’t take it personally. We are keeping those limited to very immediate family.

I’m sure I’ll think of more on my way into the city. I’ll do a mid-morning update from there.

Eventful and disappointing day

The objective today was to remove Faith from the ventilator. A slow ween all day of sedation medication along with ventilator support ended in extubation followed by respiratory distress and intubation again. NO cardiac incidents.

ENT will consult in the morning to help discover and diagnose the upper airway issue.

Mom sleeps at home tonight. Daddy and Faith time tonight.

Faith had a relatively good night. She stabilized once they intubated her again. They had to switch over to a less effective sedative (for her), the one that works the best is limited to short duration use only. It was rocky trying to get her comfortable. She was back to fighting and much more alert. We were able to communicate a bit, I know she wants to go home and isn’t too happy with that darn tube. We cuddled as best we could.

Her day nurse Sarah is back so she should have a much better day, and Mom and Dad will have a chance to leave her side for a bit. She doesn’t wake up slowly from sedation its like flicking a switch and she is awake and moving. If we don’t keep a close watch she will get that tube out on her own and God knows what else.

We are waiting to sit in on rounds to get a feeling for the gameplan moving forward. ENT should be here sometime this morning to explore the upper airway issue.