Eventful day – sorry for the delayed update, too tired to compose thoughts.

Faith had a good morning but continued to have periods of low psO2. Some could be explained like right after suctioning her ET tube, others were occurring for no reason at all. While suctioning her ET tube they were encountering resistance. Initially it was thought because she was biting down on the tube. My finger between her teeth confirmed she was NOT biting. The tube had developed a kink in it.

It was decided that the tube needed to be replaced to one again assure a patent airway. It was done without delay or complication. Afterward the stress of the procedure made Faith’s rebound even tougher than before. Her psO2 levels were in the 70’s, then low 80’s even with 100% O2 being provided by the ventilator.

Very fortunately Dr. K was there also and suggested Nitric Oxide (NO). The uneducated parent had suggested it the morning before at rounds but… They did order an echocardiogram because the primary indication for the use of NO is in pulmonary hypertension, the echo does not indicate it. On her previous admission for pulmonary embolism (PE) NO helped her when she was having low psO2. After starting the NO her saturations returned back into the 90’s and at last report from Sue @ 1:30AM she had a ps02 of 95% with the ventilator providing 45% O2 (twice the level we all get by just breathing room air). In everyone’s opinion its great based on circumstances.

It’s safe to say that extubation is a ways away. We know that the upper airway is NOT the issues as the ET tube bypasses that completely and insures a patent airway. More investigation needs to be done into what is happening with her lungs. Did the sepsis cause damage? Does she have pneumonia? Is it a ventilation issue? Is there some underlying congenital lung issue or is it just idiopathic?

Time will tell but it’s safe to say this is a few steps back, or maybe its a step in the right direction? Too soon to tell. Sue is with Faith now and I’m back home with the other kids, this week worked out well and we might take on this new regimen of one week on one week off from 24/7 PICU duty for each of us.