Monday morning 9:30AM is the scheduled time for Faith’s procedure.

The weekend has been good so far, her O2 levels have been remaining high as they back off support from the ventilator. They are also changing up the sedation/pain medications to shorter acting ones so when we are ready to wake her they are mostly clear. They started her on Methadone and Ativan on day 6 to help her deal with the narcotics withdrawal she otherwise would have suffered from (They surely didn’t do that 17 years ago for poor Jonathan, he went cold turkey).

Thank you to everyone for the generous and plentiful outpouring of food and to my wonderful daughters for their preparation and cleaning up of the meals.

Today was a disappointment. The medical decision was that today was not the day to pull the tube for several reasons and mostly because they would be more comfortable doing it on Monday so that everything is most setup for Faith to be successful. We had a very long conversation with the PICU Director, who also has a son (age 10) with Downs Syndrome (maybe a future love connection). We are very satisfied with the care Faith has received, we are not thrilled with the communications (or lack of) we have been having with the PICU attending doctor. We should not have been the last to find out that today’s procedure was canceled along with many other incidents this week.

On a positive note Faith got a real good washing today (amazing how stinky a kid can get just laying in bed). She was also visited by her Nana and “favorite sister” Abbey. We will put on the green with her and celebrate St. Patty’s Day.

It should be a quiet weekend of maintaining her and stating to turn down some of the ventilator assistance more.

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.