Tuesday, March 1, 2016


Little Avelyn continues to endure. She isn't making much improvement at this point. Her renal function labs came down slightly over the weekend and now seem to have plateaued. She isn't making much urine so I am not surprised. She continues to dump fluid out of her right chest tube and her Peritoneal drain. The fluid coming out of her chest tube and PD is chylous. This means it contains chyle or fats which have not been absorbed properly from her small intestine. The fat within her breast milk is emulsified into her lymphatic system and then leeching out. Her capillary beds also continue to leak high amounts of fluid. 
It's discouraging but also dangerous for Avelyn. She is chronically intravascularly dehydrated and at higher risk for infection. We were informed this sometimes happens with the type and severity of her repairs and her subclavian clot only complicates the issue. This is not something that is likely to resolve quickly. For some kids it takes weeks and/or surgical intervention. I hope Avelyn isn't one those, but knowing her luck it's likely. 
She is also being weaned from her sedative and pain medications. Ketamine was completely discontinued yesterday after a hard weaning period. She has spent the last 24 hours in a serious state of delirium. She hasn't rested much, despite liberal use of PRNs. She is just too tolerant. Psychiatry has been called in. She'll be placed in low dose antipsychotics to help get her through this tough period. She also has been started on Methadone and Ativan. These will inevitably help with her detox from versed, diluadid, and precedex but they won't keep her from having withdrawals or other detoxing symptoms. It'll just make the symptoms less intense. She'll still likely be uncomfortable and restless though. Right now she is so sad. Her left eye is wandering, making her look like she has strabismus. She can't track faces or objects in front of her face. She jumps in the little bit of sleep she does have and wakes herself up. Her eyes grow more blood shot by the hour and are encapsulated with dark circles. It's sad. I hate it and there's nothing I can do.
We play her music or white noise and take turns stroking her head and talking to her. That's literally all we can do. We're helpless, absolutely helpless. It's not something I would wish upon anyone. We have to keep reminding ourselves that compared to where she was a couple weeks ago she is doing so much better. But then again her rate of improvement seems to have stagnated. 
Her vent settings will be turned down bit by bit today. They hope to extubate in the coming weeks but right now it's not on the radar. Her left lung is still partially collapsed. The area of concern is the upper lobe. An ultrasound was done yesterday that showed an enochulated pocket of fluid in too risky of an area to drain. Right now it's just being watched. Hopefully it will start to diffuse into one of her many drains. I don't know if I could bear yet another chest tube sticking out of my baby. Let alone one centimeters from her so very fragile heart and vasculature. 
The good news is she is still here and putting up one hell of a fight. She's our wonder girl. Much love to you all.


  1. Continuing and will continue to pray until you all have that sweet baby girl home <3

  2. I am lost Baby girl...I can find no words of comfort to give you except to say that God has you...He has Avie. He has Sean. When you think you can't hold on any longer, you don't have to, because He's holding on to you. I don't just believe it-I KNOW IT. He's weaving it all into a Beautiful creation that we know as Avie. Love you all so very much

  3. thinking of you and praying hard for your sweet sweet baby....She knows you're there and that's what matters. Love to all.