Riding a Roller Coaster in the Dark

Someone once told me that the emotional impact of losing a loved one is like riding a roller coaster in the dark: you know the lows are coming, but you're never quite certain when they'll hit.  While our current circumstances are very different, I'd say the past few days have brought on a similar sort of stress.  One minute we're calm and happy and feeling positive.  Within mere moments, however, we find ourselves blindsided by an emergent situation that we never could have anticipated...riding the roller coaster in the dark.

Each of the last three days have included some amazing moments with our sweet girl.  Josephine has been periodically awake and very alert.  Although she's still not moving a great deal (primarily because of the ventilator), she has taken to making the most adorable faces.  My favorite among these has been the "oh-my-goodness-there's-something-in-my-mouth-oh-wait-that's-my-tongue" look, which is typically followed by a sweet bubbly-mouthed smirk and a cute eyebrow raise.  (We'll soon start teaching her the "are you kidding me" single brow raise, a trademark look that I know will serve her well in the future.) :)

The past three days have also included some fairly discouraging setbacks.  On Friday during Rounds (which I'll grant her, was a pretty darn good time...I mean, if you're gonna get yourself into an emergency situation it seems wise to do it when a group of doctors is standing outside your door), Josephine began to desaturate.  (Essentially this means the oxygen level in her blood began to drop...and fairly rapidly.  A person with a "normal" cardiovascular system generally stays at right around 100% saturation.  Josephine's range is slightly lower - between 75% and 90% most days.  She dropped to 63% in a matter of mere minutes.)  After ordering and evaluating a chest x-ray, the doctors determined that she had developed pleural effusions on both the right and left sides.  To remedy this, they decided to re-insert a chest tube on her right side in the hope that the fluid - as well as the fluid from her left side - would drain out and relieve the pressure being placed on her lungs.  The procedure, while emotionally traumatic for Michael and I, went well.  Josephine rested and relaxed for the remainder of the afternoon and evening.

Saturday started with renewed positivity.  We were optimistic that things would now head in the right direction, and based on the morning's events (some quality eyeball time with Josephine), we felt certain that the right decision had been made.  Around 4 p.m. Josephine began to spontaneously desaturate again.  The nurses and respiratory therapists jumped into action and, after around an extremely tense hour of repositioning, suctioning and tweaking ventilator settings, they managed to get Josephine stabilized.  The effusions were once again determined to be the cause of the drama, yet rather than place a second chest tube, the doctors opted to try pharmaceutical therapy - lasix and albumen.

In cardiovascular terms, Josephine stayed relatively stable overnight from Saturday to Sunday.  Her heart rate, blood pressure and oxygen saturation remained within reasonable limits.  During her bath early Sunday morning, however, the nurse noticed that her chest tube (the one placed little more than a day prior) had come loose...the only option at that point was to simply remove it all together.  A few hours later Josephine's daily x-ray showed that the loose chest tube had allowed air into the pleural space - a pneumothorax - as well as moderate to severe effusions still growing on the right and left sides.  So, at around 9:45 a.m., Josephine underwent another procedure (the second in less than 48 hours) to place two additional chest tubes.

Currently, Josephine is stable.  (I'd even say she seems remarkably well in spite of the drama that has taken place over the past several days.  She's still clutching her pink pony, and sporting her gigantic hair accessories and matching socks...I'm not sure she even realizes anything is different.)  We're a little disappointed at the idea that she has taken what seems to be a step backwards, yet we're hopeful that the intervention will succeed in mobilizing the fluid so Josephine can move toward extubation. She's a fighter, no doubt about it.

Looking forward to a better day tomorrow, followed by a miraculous week! Thanks for your prayers to that end.