A relatively quiet night (for Faith), the ICU was very busy and we were not in an isolated room so sleep was not so good.

OK, Its not an abscess, the x-rays were compared to previous which also showed the same space and she has NO clinical symptoms of an infection (confirmed by blood work).

With the promise of ice cream Faith did let ENT pass a small scope up her nose and down her windpipe for a quick look and nothing abnormal was found although it was admittedly difficult to get a full clear picture in a kid who was awake and not happy about the procedure.

For today the team knows she responds well to systemic steroid as they reduce the inflammation in her windpipe and ease breathing.  They come with a whole bunch of other problems in the long term.  For tonight we are going to “try” to get her to accept using CPAP while she is sleeping.  CPAP will keep some positive pressure on the airway and prevent collapse or obstruction while making it a bit easier to breathe.

The odds are less that 50% we will make much progress tonight convincing her this is good for her and she should cooperate.

For those who have asked what the final goal to getting her healthy his.  Quite simply to be able to breathe on her own without assistance or O2 while both awake and sleeping.

More tommorrow.

We are back in CHONY PICU original bed. Easy transfer no incidents.  Faith slept most of the way.

Tests and consults by ENT and pulmonary.  Talk of doing CT scan tonight.

Updates in morning if anything new.

We are awaiting transportation back to CPMC/CHONY.

Faith started developing respiratory issues again on Sunday. They have not improved adequately since then.  A neck X-ray this morning MIGHT indicate an abcess pressing on her windpipe.  The experts here are split. This facility is not
setup for acute care. So we go where we need to until this all gets sorted out.

Faith & Mom had a good first night at CSH. We are still monitoring Faith’s O2 saturations as she sleeps as there is still some sleep apnea made worse by the pulmonary emboli (they make it harder to get oxygen into blood).  Unfortunately Mom & Faith were woken many times by the alarm on the monitor and Faith had to put on a nasal cannula, which she hates.

She had a good day today with her first day of therapies; Recreational Therapy, Speech Therapy, Physical Therapy and Occupational Therapy.  After dinner we gave her another good bath (her second one this month!). She was good and tired when we left her at 8PM, hopefully she gets another good night’s sleep.

A few people have asked about visiting.  I will post her therapy schedule for next week so you can plan your visit around them.  I will be with her during the day until around 4PM when Sue gets home and then return the next morning. Here is a link to CSH’s visiting information (http://www.childrens-specialized.org/For-Patients-Families/What-to-Expect/During-An-Inpatient-Stay.aspx)   and directions (http://www.childrens-specialized.org/Locations/PSE-G-New-Brunswick.aspx) .

Bringing the real camera tomorrow so I can get some good pictures, no more cell phone shots.

Happy Easter to all, and to all a good night.

Spent the night last night out of the ICU on a regular medical/surgical floor. OK I admit it we are ICU snobs and have come to have some very high expectations of doctors & nurses. Last night’s nurse was what I call a No-Doz-Nurse, don’t sleep if you want you kid to survive the night. Didn’t & she did so success for Faith.

The good news, Faith is now in Rehab. We were transported to Children’s Specialized Hospital in New Brunswick today. We are already happy we made the choice.

Faith settled in very well. They fit her for a wheelchair as soon as she got there. She is still too weak to get around on her own so wheels will do the work. She has also be taught and learned about wheeling herself about (an indirect way to rebuild that upper body strength). Regular clothes (on patients and staff) go a long way when you are so accustomed to hospital garb. Mom is very excited about letting her get a real good and long soak in a nice warm tub tonight to start getting though a month’s worth of yuck.

A well-deserved good night sleep for all.