The picture says it all; she wants OUT and has been through hell.

Faith went into the OR around 10AM and was out by 10:45. Everything went very smoothly. They ended up using a sedation that kept her just under a bit while not interfering with her breathing. She is staying on that for the next 24 hours. The ENTs said that everything looked good when they scoped her, but want to keep her on steroids for a few more days to keep swelling down etc.

She is currently on BiPap (assists with both inhaling and exhaling) and will move over to CPAP (inhalation assistance only) over the next day or so. Her progress on getting out of the hospital will mostly be based on how much Oxygen assistance she needs. She is going to have a longer recovery at home. She was intubated and on a ventilator for 11 days (Jon still has the family record of 21 days). We know she is going to be weak and are weary about any feeding/speech issues it may cause. Jon needed so much therapy afterwards but he was only 10 months old when it all happened so wasn’t very developed.

Time will tell, we take it day to day. We are prepared for at least another week in the hospital, 2-3 more days in the ICU and then a regular floor for the duration (fingers crossed).

If anyone knows of a place to rent an iPad (Wifi) (That doesn’t want the full retail price as a deposit) let me know. She is going to be a trick to keep entertained. Currently she is watching her Dora/Diego/Spongebob Netflix videos on her iPod Touch which isn’t close to ideal. I also want her to be able to do some more meaningful tasks as she can.

I’ll update once a day from now on with some progress pictures

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.