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.

Good Day – No Events.

Faith continued to rest today. She had two doses of Lasix to help remove all the fluid she is retaining.

They have ruled out any cardiac involvement. Heart & Major vessels are all good, pressures are also good. The pneumonia looks either non-existent or minor on X-ray. She does have edema in her lungs. The current working theory is either fluid overload during/post operative that she hasn’t been able to void or a-typical post-operative inflammation.

She is running a fever at times that does respond to Tylenol and they have cultured every fluid (blood, urine, saliva, ET tube) and so far all are negative for any bacterial infections.

As of this afternoon they are very happy with her recovery rate which is a very different story than last night. The hope/plan is to reduce her ventilator dependence slowly over the next day or so along with starting to wake her up slowly to see how she responds.

She is a mess and stinky but on the mend as Woody stands vigil.

They discovered on her chest x-ray that the vent tube was slightly out of position. It was backed up 1 ½ cm. Afterwards her O2 level through the vent was able to be reduced to 40% (twice normal air) down all the way from 80%.

We have definitely turned a corner!

History:

3/1/12 – 3/4/12 – Faith sick with viral symptoms. Malaise, flush rash on cheeks. Fifth’s disease going around at school. Comfortable and normal activity (Getting in trouble)

3/4/12 into 3/5/12 – Started to develop more respiratory symptoms (cough, secretions). Very rough night sleeping. A distinct change/drop-off in activity.

3/5/12 – Visited pediatrician. Dx Croup, started on steroids, inhaler & antibiotics.

3/5/12 – 3/6/12 – Good Days…Rough Nights.

3/7/12 Day – She spent all day cuddling with Daddy on the couch watching SpongeBob Movie with many periods of sleep. Breathing more labored, very difficult and rapid while sleeping with audible obstructing. When I left her alone on the couch for a 3-4 minute period of time I came back and she was having a cyanotic event. Toes, fingertips (to second knuckle) and lips turning deep purple/blue. It took about 2 minutes to wrestle her awake and keep her awake and alert to stabilize her breathing. She pinked up very well.

3/7/12 Afternoon – The Valley Hospital Emergency Room – Evaluated and admitted with Pneumonia & Suspect Obstructive Sleep Apnea (OSA).

3/7-3/8/12 Overnight – Very rough night sleeping (if you can call it that). As she slept her Oxygen saturations (spO2) were all over the place as low as 30 at one point and never staying up in the normal range for very long.

3/8/12 – ENT consult – Very large tonsils (3.5 on 1-4 scale) strong contributor to OSA along with Down’s Syndrom (DS). Scheduled surgery, Tonsillectomy & Adenoidectomy (T&A), for 3/7/12 at 3pm. As the day progressed a bit and we saw Faith desperately needed sleep and she wasn’t going to get any for the next 27 hours we consulted with our pediatrician and ENT that rapid intervention was required.

3/8/12 Evening – Had T&A surgery at 8PM. It went very well no complications or events. As discussed pre-op she was kept on ventilator and moved back to PICU.

3/9/12 – Very confusing and conflicting day. Initially the plan was to back off the vent slowly and extubate by midday.
10AM – Plan changed to keep her on ventilator all day into Saturday/Sunday
12PM – Plan now changed to transport to Columbia Presbyterian Medical Center Pediatric Intensive Care Unit (CPMC PICU). The reasoning for us was that they did not have adequate staffing (Dr/Nurses) for 24/7 ventilator maintenance especially over a weekend. This is also known as keeping parents in the dark over suspected severity of situation.
4PM – Transport team from CPMC PICU packaged Faith, Ventilator & IV Pumps for transport and transported to CPMC.
7PM – Our first consult with CPMC PICU doctor. Faith was transported for stated reason plus the fact she was not responding to therapy as fast as they would suspect. Working diagnoses and theory pneumonia was more severe than thought (x-rays do not indicate) or worse developing pulmonary hypertension (echo cardiogram not indicative either). Faith requiring 80% Oxygen (O2) through vent to maintain adequate spO2, much more than necessary. Plan is for supportive therapy, many more tests overnight and observation. She is very comfortably numb through all of this, requiring pretty high doses of narcotics to keep her under (party girl).

End of History