I’m going to do a brief recap for some that only get weekly updates (e-mail list) please ignore the verbosity.

• Faith was removed from Ventilator on 3/19/12 Day 11. She transitioned from BiPAP to CPAP to Nasal O2 to now periods of breathing room air when awake and out of bed.

• She has been sitting in a chair, using the potty, walking a bit and generally liking sitting better than lying in bed.

• She started to take some clear fluids today (water & juice) So it’s safe to say that both input and output are mostly functional again.

• They removed the NG tube (stomach sucker) today and her IV in her arm failed so down to just one tube ND (feeding tube) and some wires.

There are still some significant issues to overcome before coming home:

1. She still has a very rapid and shallow breathing pattern at times (as high as 70-80 bpm) and looks distressed.

2. We are not sure how well the T&A surgery helped with her Obstructive Sleep Apnea.

3. Not sure what her O2 support requirements are for Day & Night

4. She is coming off of some very significant doses of opioid drugs that were needed to keep her sedated when on the ventilator. They have already had to back down off of the first day wean reduction because she is showing signs of withdrawal (tremor, cold sweats, nausea, rapid breathing, yawning, excess saliva production, eyes dilated to almost full & 1,000 yard stare at times)

5. She may be suffering from some ICU psychosis (http://www.medicinenet.com/script/main/art.asp?articlekey=7775&pf=3&page=1)

No talk of discharge yet, our gut on this one is not before the weekend.

Another good day.

Highlights:
• Faith was moved from BiPap to CPAP. She should be on there for another 24 hours until they trial her off of it.
• Food by mouth starting Wednesday if she is ok while off of CPAP. That means she would be able to get rid of the ND and NG tubes in her nose 🙂
• Today her arterial line and central line were removed 🙂 a new IV had to be started 🙁 so they had IV access for medications, 2 lines out 1 line in.
• Talk of possible discharge from the ICU rather than having to go to the floor!! All depends on her Oxygen requirements…maybe by end of week 🙂
• Still going to be a long recovery at home. She needs to continue on her narcotics wean (Ativan & Methadone) to prevent withdrawal symptoms. Weakness, possible speech/swallow issues from ET tube
• Pulmonary recommends we use CPAP on her when sleeping for as many hours as she will tolerate (going to need lots of prayers on this one, tolerant isn’t in her vocabulary)

Picture after “bath” and shampoo and letting Mom do her hair

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.