Shall We Dance?

 Despite the fact Josephine has been in CICU for almost 7 weeks now, Michael and I still haven't quite become accustomed to the intricacies of the daily dance, a precarious movement from illness to wellness that twists and turns in ways we never would have expected.

With Monday's extubation, Josephine took a huge step forward in her progress.  We spent Tuesday, Wednesday and Thursday in a state of near constant excitement.  News of Josephine's impending move to Step-down spread among the doctors, nurses, therapists, social workers and clergy at the hospital, many of whom stopped by to see Josephine and congratulate us on what finally seemed to be providence smiling in our direction.  Our course was becoming clearer:  Josephine needed only to show consistent weight gain and we would be the next family to take the triumphant walk down the hallway to IMU.  (As silly as it sounds, I've played this event over and over in my head since our first week at CMC: Josephine being wheeled down the hallway with Michael and I behind pulling a squeaky red hospital wagon filled with our belongings as we wave pageant-style to all of the nurses.  Obviously, moving to the IMU is not the same as being discharged all together, but the change in geographic location represents actual physical movement toward our ultimate goal.)

Once again, we've been assigned the more scenic route...

On Friday afternoon, Josephine's breathing became tachypnic, rising from her normal rate of 40 - 60 breaths per minute to 80...then 90...and finally, almost 120.  Her temperature, which had been hovering around 99 degrees for most of the day also began to climb.  By the time the Nurse Practitioner on duty was called, Josephine had entered fever territory, topping out at over 101 (not awful for a baby, but potentially disastrous for a heart baby.  Once an infant with a BT shunt becomes febrile, they run the risk of developing a dangerous tachycardia and dropping their oxygen saturation rates.  Definitely not something that would be good at this point.)  After looking at Josephine's labs from earlier in the day, the NP decided the best course of action would be to give Josephine some Tylenol and a dose of bicarbonate to remedy a bit of a metabolic acidosis.  With the administration of the bicarb, Josephine's respiration quickly returned to a more normal range and her temperature began to fall.  Michael and I went to sleep last night feeling as though things were more or less O.K.

Overnight, Josephine again developed a bit of a fever.  Her white blood cell count became elevated and her CRP (C-Reactive Protein, a marker of inflammation) also increased.  To be safe, the Attending Physician decided to run a series of blood tests to rule out infection.  (Since infection control is something taken very seriously in the critical care environment, Michael and I were made to wear masks and special gowns while Josephine's nasal swab was being processed.  Luckily, the RSV and flu tests were negative so we didn't have to wear the sterile gear for long.  During our time in CICU, we've seen a number of other families wearing these outfits...never for a minute thought it would be us.)

At this point, we are still waiting for the results of Josephine's blood cultures..and we're praying everything comes back negative for infection.  Through all of this, Josephine has looked remarkably well. (This, as evidenced by the rather animated photos below.  Note that yawning for Josephine isn't just a subtle facial movement, it's a full-body experience. :))  Her stats are all holding strong, and despite being very sleepy today after a dose of anti-anxiety medication early this morning, everything has seemed more or less normal in terms of her appearance and behavior.  (In short, she's not really acting like a sick baby...hoping that means she's not!)

We appreciate all of your prayers, but are requesting a few more toward the recovery - and specifically, forward movement without the burden of infection - for our sweet little girl.