Silent Cries

Poor Avelyn has been struggling with so much pain since her hematoma evacuation surgery. In the initial 36 hours post op period it got progressively worse. By this morning I was at my breaking point of watching her suffer. 

I have been saying since immediately post op that she needs ketamine to adequately treat her pain. Before I begin my tirade, I have to acknowledge that the two nurses who've had her since sugery have tried. They too have been so frustrated. I told providers in each set of rounds that she needed ketamine. I heard both nurses tell various providers, "mom says Ketamine works.."

No one wanted to order it. 

I understand it's a more powerful drug. 

I understand it is associated with delirium.

I understand it's usually saved as a general anesthetic. 

This isn't our first rodeo around here. 

Avelyn's opiate receptors are saturated, throwing more diluadid and fentanyl at her does nothing but make her delirius. 

This morning I showed my butt, ironically it was to one of my favorite providers, an NP who knows Avelyn well.  She also knows me well enough to know I wouldn't campaign for over sedating my baby. I got upset telling her about how much Avelyn has been suffering and how I wasn't willing to let it continue. She suggested consulting the pain team and got Avie's surgeon to bring it up in surgical rounds. The pain team consult was great start and I knew they would help.....eventually. But Avelyn needed relief right then. I got upset when she needed to have her line resutured and PD dressings changed. I was rude and I hate being like that, but unfortunately it seems like sometimes that's the only way things will get done. 

I know my baby. I know her opiate doses look insane. I know for most babies it would be more than adequate, but most babies haven't had their chest open and closed four times-even here in our hellacious situation.

So anyway, she got ketamine and immediately found relief. That was around ten this morning, she didn't need another PRN until around four. She slept, and without a grimace, for the first time since before surgery.

Past the pain, Avie's doing alright but is a bit sicker as we expected post op. She's really puffy now, but not due to needing volume from a hemodynamics standpoint. Her blood pressure since returning from surgery had been stable, thank God. She didn't require any cardiac meds during surgery or after. She is puffy because her kidneys took a hit and urine output has dropped again. Her PD is also leaking again so her dialysis hasn't been as effective. She's really puffed up in the last 24 hours. It's so sad, especially because I know it will take her a long time to get the fluid off. However the good news is, she is still making urine. It may not be much, but it's something and that's encouraging. The bad news is she'll still need dialysis for a while. Maybe weeks, maybe months, maybe a year. There's no way to say. Right now she has a temporary PD port that was placed at her bedside, and it's her second. These temporary PDs are prone to dislodging and leaking. Once they start leaking they aren't really salvageable. 

So Avelyn is tentatively scheduled for general surgery on Monday to have a more permanent peritoneal dialysis catheter inserted into her belly. This one will work until she doesn't need it anymore then it will be surgically removed. That'll be a good day.

And finally I figured I should mention (as an extremely understated "after thought" as not to jinx it in any way), Avie's chest tube output is down. Way, way down-like less than 100ml/day down. For this we are so blessed and thankful. The end of chylothorax is upon the horizon, I just know it.

Please keep our precious girl in your thoughts and prayers. As I have explained before she will likely never be "out of the woods" but we might be finding our way out of a dark cave and making our way back onto the path of recovery. Only time will tell.

The photo below was taken of Avelyn's window before we got to go back to see her after surgery. You hold on to the strangest things in these situations, for instance the lack of rushing around in her room was very encouraging. The second is from when Avelyn was a day old. I know it may seem to strange to those who've never been in our situation, but I long to hear my baby cry again. I long to hear that sweet precious cry as evidence of her stretching her lungs and pulling air all on her own. It's been so long since we heard her sweet voice. Her silent cries grate at the soul and tear at the heart. Hopefully vent weans are in the new future and she tolerates them well. 

Thank you for checking in on our girl and for the continued support and encouragement. She's still putting up one hell of a fight. I couldn't be more proud to be her mom.