• No intubation or ventilation today, calmer minds prevailed and kept Faith on just O2 via nasal cannula
• They have started Nitric Oxide (NO) therapy. It’s a gas that acts as a vasodilator opening up the small blood vessels of the lungs.
• Cardiology was by and did another echocardiogram and compared to the study done two weeks ago. No changes, no signs of pulmonary hypertension or any obvious abnormalities. They were concerned that she might be going into heart failure if the clots in the pulmonary arteries were causing a significant increase in pressure.
• Faith is resting nicely on a new sedative that is giving her a much more controlled experience than last time without the rollercoaster ride and frequent breakthrough.
• We are a bit more positive on a good prognosis after speaking with a doctor we met recently and formed a good relationship with. He also happens to be the directory of the PICU and has a 10yr old son with Down’s Syndrome. The other docs in the PICU also took notice when he visited Sue& Faith this morning which helps keep fires lit under the right people.

The Bad

• The folks in vascular surgery may wish to intervene by placing a vena cava filter (http://www.radiologyinfo.org/en/info.cfm?pg=venacavafilter). The idea is to prevent any further clot from her leg breaking off and landing up in lung or creating a severe blockage to the lung or elsewhere.
• We are still not aware of the root cause of all the clotting, was it just from the central line site or was there some pulmonary embolisms forming earlier that contributed to her original respiratory event? Could be related to Trisomy 21 (Down’s Syndrome)
• Respiratory rate still high and difficult to keep pSO2 (peripheral saturated O2 levels) levels adequate, may eventually require intubation & ventilation.
• Pulmonary still believes there is an upper airway obstruction causing interference with her breathing. The exact anatomy has not been identified yet.

The Ugly

• She might be experience pain from two sources
o The DVT (Deep vein thrombosis http://www.mayoclinic.com/health/deep-vein-thrombosis/DS01005/METHOD=print ) in her left leg is usually painful
o Pulmonary Embolisms (http://www.mayoclinic.com/health/pulmonary-embolism/DS00429/METHOD=print) are usual detected when people report chest pains.
• We don’t really have a means of detecting this and she cannot accurately report to us
• Even if they do detect pain, they are very reluctant to introduce narcotic pain killers as they will suppress breathing and her respiratory system. The current sedation should offer some analgesia.

Treatment:

• Sedation
• Heparin Drip to keep clots from forming, thin blood & help dissolve smaller clots.
• O2 & NO
• Methadone/Ativan/Lasix/Steroids

Things are changing hour to hour. If there is a significant event I will update FB otherwise I’m going to keep to a single update each day.