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.

Busy Day

Faith has been up/down/fighting all day. The paralysis medication was stopped and the sedation was lowered. As soon as she regains consciousness she tries to get out of bed endangering her ET tube (used for breathing). She was able to communicate with us a bit today mouthing words with no sound, yes & no and some signs she knows that only take the one free hand she has. She is anxious and wants to get out of there. We agree, however they are still not satisfied that she can be extubated. An earlier test indicates that her airway swelling has not subsided enough for her to be off the ventilator.

The plan for now, restart paralysis meds, heavier sedation and allow another 24 hours to pass then retest her airway.

Anyone that knows her knows how stubborn she can be, not to mention physically strong. Neither has changed or weakened. It’s going to be a trying week. I will be taking watch tomorrow. Sue needs to get to the chiropractor for her back and some sleep in a real bed.

Nite all….Tired.

Good Night – No Events

They have cut the sedation in half. Sue woke up to “Can I get another nurse over here to help me”. Faith was a little too awake and was trying to get out of bed. This kid doesn’t even like a band-aid on when she gets a cut. She isn’t going to like it too much when she is awake. Current count is 1 IV in each foot & hand (4 in total) a central line and an arterial line (2 more) an ET tube and feeding tube so the total tube count is 6. They plan on reducing that before she is awake but of course she will still need some.

Mom and night nurse Regan got her all clean and prettied up last night. Mom is loving the fact she can brush her hair as often and long as she wants (it’s been a daily fight for over 8 years to keep that hair tamed).

Going back into NYC with favorite sister Abbey today.