What Day is today?

It's so easy to lose track of time in here.

First the big news: We have moved from ICU to the regular floor (!)

I didn't post yesterday because we had a baby-ain't-happy-ain't-nobody-happy kind of evening. Nothing life threatening but from Jacob's perspective much more traumatic.

While getting a lot of lines and tubes removed was a good thing and meant we got to move from ICU to the floor (yay!)... the specifics for Jacob was a long day of people pulling tape and stickers off delicate baby skin, sutures being removed, and things being pulled out of veins, arteries and flesh. Also. The big people in his life had switched him off IV pain meds and on to oral* pain meds? What!?!? (the look in his eyes for the evening was def saying to me....I had open heart surgery two days ago? No IV narcotics? Are you effing kidding me?). Plus the big people still hadn't taken off the awful arm thingys that keep him restrained plus they weren't picking him up even when he did his best pick-me-up cry *plus* he hadn't pooped since Saturday (reference narcotics). Result: by evening, patient and laid back Jacob had reached the end of his rope and he was determined to make sure everybody knew it.

Meanwhile his parents were stuck navigating this situation with a B team nurse and an inexperienced pediatric resident and a raging baby who never rages who can't articulate all of the aforementioned atrocities...that to be fair... his mother can only now deduce after several exams, X-rays, switching back to IV meds, applying constipation meds (that were finally successful), sleep, and the perspective provided by the sunlight of a new day.

[in the middle of the night faced with a distressed baby that is never *that* kind of distressed, the mind races and Jacob's parents were imagining much worse possibilities for his discomfort....especially since the distress was causing his vitals (heart rate, breathing, and pulse ox) to go all over the place.....not a good night]

But what a difference a good bowel movement can make!

That's where we are. He has more to go but he got the ball rolling. Today we go back to figuring out moving him from the IV meds again and on to oral* pain meds. Hopefully we will get the drainage tubes out today although all his thrashing about last night made them seem to drain more fluid not less so we'll have to wait and see about that. (sigh)

As a reminder (more to myself), Jacob did make awesome progress yesterday. Updated tally:

Paraphernalia

• Breathing tube (!!!!!!!!!) - replaced with nasal cannula supplied with oxygen and nitric oxide
• Right foot IV
• Left foot IV
• Central line (neck)
• Arterial line (left hand)
• Catheter
• G-tube foley - replaced with G-tube button (started formula!)
• Two drainage chest tube with external pace maker wires
• Arm restraints
• Rectal temperature probe
• Left foot temperature probe
• 3 pulse ox probes (two thumbs and a toe) replaced with one thumb pulse ox
• Cerebral pulse ox
• EKG stickers

Fluids

• 3 heart meds
• Electrolytes
• IV pain meds - oops IV pain meds
• Antibiotic
• Steroids
• Lasix

Morning reading - in PICU prior to de-lining

Post de-lining... in a proper baby crib... on the Peds floor !