BAD Night, VERY BAD Day

Last night the plan was to try to get Faith to tolerate CPAP as a means of helping her airway obstruction. Let’s just say EPIC FAILURE.  Even with the inclusion of sedation that should have been able to keep a horse calm she was able to breakthrough and rip it off.  The dose was the highest allowed without already being on a respirator, at a slightly lower dose she was trying to get out of bed.

At 9AM we had a very confrontational bedside meeting with ENT and the ICU team. We told them all where this was going and the fact that she needed immediate assistance as she had been working way too hard to breathe since late last night.  Her breathing was obviously very difficult and her heart rate was going very high.  Apparently albeit repeated attempts it fell on deaf ears.

At 12 noon she was again intubated and returned to a ventilator.  The intubation procedure was very smooth; there was no loss of oxygen or cardiac events.

There is so much more to the story that I may go into at a later time, but to summarize we are very disappointed in the level of care she has received from an institution we once revered.

Without any studies to tangibly support it they have clinically diagnosed her problem with the ubiquitous “upper airway obstruction”.  Their solution to remedy the airway problem is tracheostomy.  We are not convinced that such a radical procedure is necessary without knowledge of the underlying cause, nor are we convinced it is appropriate without knowing the root cause of her breathing difficulty.

We have been asked if this is a life-threatening condition, the simple answer is the reason one is in an ICU is because their condition is life threatening.

“What doesn’t kill us makes us stronger”

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.