Right now she is in the early stages of kidney failure. We don't know if the damage done will be permanent or not. Her left lung is collapsed due to fluid build up in her chest. This fluid is also causing her heart and trachea to shift to the right. The surgeon will be coming in today to place another chest tube that will hopefully alleviate the fluid pressure that's collapsing her lung and creating the shift. They also found a clot in her right subclavian vein. This clot and her fundamentally changed cardiac physiology are creating a whole host of problems due to increased veinous pressure. The increased pressures are causing her to have capillary leakage. The leakage is decreasing her cardiac output and therefore generalized purfusion ability-which is further stressing her kidneys. The capillary leakage is being drained by her right chest tube and her PD drain. She has fluid flooding out of both. So much so that the providers can't assess and replace the losses fast enough sometimes. Due to the amount of chest tube loss she is staying in a state of metabolic acidosis. They keep having to replace bicarbonate to balance the ph of her blood. She is also still requiring blood products. Yesterday she got another transfusion of red blood cells and immunoglobulins, today she is getting plasma. She also is requiring albumin every 6 hours since Friday. Plus she isn't tolerating feeds again due to all of the cap. leakage. The lipids from her breastmilk seeped out of her intestines into her lymph system and into chest tube drainage.
We're hoping things start to turn around soon but I don't think it's realistic. The clot in her subclavian vein may take weeks to dissolve. She is on an increased dose of heparin now, but that'll only prevent it from growing. It has to dissolve on its own. Who knows how much of her veinous pressure is due to this clot and how much is due to her new physiology. It's all got us pretty worried for Avelyn's overall well being.
On top of these new worries she still has the old ones. The resolving (per head circumference measurements) subdural bleed in her occipital area. Worries for endocarditis and sepsis (although no lingering signs exist). Decreased gut purfusion. Difficulty managing pain and sedation due to her length of need and growing tolerance. When she is awake she's in a state of delirium. It's heart wrenching.
We are so grateful our little one is alive and still fighting but damn....we really miss our baby and she deserves some peace and comfort. I sincerely hope and pray she starts to improve soon. She has a lot to do and see in this world. We can't wait for her to get to be a baby.
To sleep comfortably, have a full belly, smile, laugh, be pain free and just do the things little babies should be doing-not fighting for survival.