Wed, Nov 14th

I want to introduce you to a word used pretty often here with the Dr's and nurses, and that word is "Trending". " ...She's trending in the right direction""...We want to see how she's trending"... The best way I can define this word (besides the obvious) is: it's hard to put an actual (physical) number to some things (but it's still useful data)... Kinda of like a pattern or an M.O. (but not one you can quantify). Does that make sense? I'm a little torn myself.... I see it as putting a good light on something that you can't measure or rely on... It gives me hope for next time which could set me up to be disappointed if next time doesn't go as well. I'll let you decide if you like it or if it works for you (you might see us use it to give an update). 

Once again Noa is in charge. Yesterday we thought that we might have a couple days in the PICU (Pediatric Intensive Care Unit), still on dialysis and recovering from the pulmonary hypertension crisis episodes frm the night before. The circuit looked good last night... but, Noa and the dialysis circuit decided that today would be the day. They felt a need to move her sooner than later to transfer her care since she was off ECMO and she is a neonatal (baby). So, she was transfered to the NICU. She didn't like the move so she caused a little drama today.

  -Heidi made it to rounds (turned out to be the last time) and the decision was made to move her this afternoon. We ended up staying at the hospital and eating in the Atrium for times sake. Our case worker Susan, watched Ruby and Emmaus so that we could both be there for the transfer. Good thing Wall-E was on when we left. We watched the nurses carefully unhook and unplug everything to create a mobile ICU unit to take down to the 2nd floor. Out the door, down a short hall to the elevator, and down to the NICU. I think it took 8 people in collaboration to move her. Once she started to settle into the new room, she took a bit of a hit. Her C02 climbed, heart rate was up, and blood pressure was really low. She's a pretty "sensitive girl". She doesn't like change (movement, being newly hooked up to any circuits, suctioning, ext..). Are you seeing a pattern?...( a trend?). Sounds like the NICU is just what she needs.

               

How the NICU works:
The NICU is very hands off and more observation (unlike the PICU, being more hands on). There are smaller windows to keep the room dim, the lights are minimal, and not much more sound than the ventilator humming away. The nurses do something called "cluster care", where they come in and do everything all at once and then leave the room for long periods of time..keeping an eye on her stats and checking on her periodically. They're able to keep her less sedated because she's less stimulated, so not as much touching. 

She still off of dialysis due to the move today and how it caused some instability in her body- they are not wanting to push her too much. So, instead of putting her back on dialysis, they gave her a diuretic to "wake up" her kidneys and see if she'd pee on her own instead. It didn't end up working so back on dialysis tomorrow. Last time she started a new circuit it sent her into a crisis, so lets hope and pray that she does well. They'll be prepared just in case anything goes wrong.

Like one of the Dr's. said to Noa today, "No schenanigans."                                                        


So, today was a bitter-sweet day. Kind of like coming off ECMO...(we know it's a good move but hard and scary to leave what's been working). The NICU will have more specific care for what she needs now. While on ECMO, Noa had NICU nurses come up to the PICU to help with the circuit and for the bedside care. And while on dialysis, Noa will have PICU nurses come to the NICU to run that circuit... So we'll be seeing a lot of the same faces.

Thanks Again
Roses