The Good

• 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.

Brought Faith to Pediatrician who said she needed to go to ER was concerned about swelling of left leg and her labored breathing. Really no choice of ER’s except back to CHONY.

When we arrived at CHONY Faith was displaying significant signs of Respiratory distress and were fast tracked right into a room and were blessed with some very good Doctors & Nurses.

So far she has had an EKG, Ultrasounds of both legs, CT scan of chest, x-rays of abdomen, chest & neck.

Diagnosis right now is Deep Vein Thrombosis in the left leg where her central line was from the previous PICU stay. More significantly and concerning is significant bilateral pulmonary emboli which means partial clots in both main branches of her pulmonary artery and some further down as it gets smaller.

In the time it took me to drive home to wake and tell the kids what was going on they have decided to intubate and ventilate again. Her heart and lungs are working very hard right now to do their job, by using the ventilator and sedation both will be less stressed. They have also started a Heprin drip to prevent any further clots from forming. Vascular surgery has been consulted and believes at this time that more conservative measures are prudent vs. surgery (thrombectomy) to remove the clots surgically.

Obviously the situation is very serious but we remain positive about the potential outcomes, the next several days will hopefully be the most enlightening as to where the path leads us next.

Na na na na, na na na na, hey hey hey, Faith is home!

They never made it to a quiet room outside the ICU last night but it was still a quiet enough night. Not that Faith slept much, too interested in watching movies on her new iPad.

She is home though, on about a half dozen medications which she seems to be taking every 3 hours but they taste much better at home. She is managing very well without any breathing support, no CPAP (even when sleeping) and able to maintain her O2 levels with just good old air.

She is very weak, going to give Mom & Dad a good workout carrying her around for the next few days and up and down stairs. Her personality is definitely shining through all the rough edges of her physical appearance. Her narcotics wean goes into the second week of April, can’t wait till she clears of all that, she will feel so much better.

Lots of good sleep for all tonight (I hope). Thanks to all. I will have a more formal thank you when I can think straight and not forget to mention all who have been so supportive and helpful in these past few weeks.