Wednesday, January 20, 2016

Grow Baby Grow!

The last week has been a roller coaster. Our girl had her heart cath and we were told that she needed to undergo a "unifocalization" procedure to bring the MAPCAs into her left pulmonary artery sooner rather than later. Sean and I expressed doubt, as its well known that kiddo's do better when they are larger. We trust the surgeon though and last week he seemed to think it was best to go forward with the surgery. It was a major blow. Sean and I were both terrified especially given her small size. 
As the weekend played out the blows kept coming. Avelyn failed extubation on Saturday, and when I say failed extubation-I mean she didn't make it five minutes. We're still not positive as to why but it was likely a combination of factors. These being atelectasis, pulmonary edema and thick mucous plugs dislodging and blocking her airway.  
Sunday brought it's own hard knocks. We learned that at some point in the last month our sweet girl has suffered an ischemic stroke. She has two small infarcts on her basal ganglia. Supposedly the infarcts are small enough and she is young enough that neither should affect her. However we won't know for sure until much later in her life due to the basal ganglia contributing to procedural/habitual knowledge and fine motor skills. These are things babies obviously won't express anyway. So that was a hard pill to swallow and makes our fear of her decompensation events that much worse. What if the next episode is worse and she suffers a more severe stroke? 
Moving into the Monday we learned the PCICU filled up so all the scheduled surgeries for Tuesday had to be canceled because there wasn't a PCICU bed to put the post op kids in. Given Avelyn already has a PCICU bed, moving her surgery up a day was tossed about. 
Then out of nowhere, Monday afternoon her surgeon switched gears and decided to give her one last shot to grow before attempting the unifocalization. Sean and I were thrilled. I literally felt exhilarated, sometimes you just know things will get better. Granted she was still intubated at this point but I felt a peace and knowing come over me in that things would start to turn around for our baby. Sometimes God's sends us signs that are just much more obvious than others, the canceling of her surgery felt like one of those obvious signs that I had been praying for.
Since then she's been doing better. She was extubated yesterday and has tolerated that well. 
Unfortunately it isn't all smooth sailing. Avelyn is suffering from withdrawal symptoms from her sedative medication that she needed while she was intubated. She has been tachycardic, restless and overall acting like a little jitter bug. For once I felt within my nursing element seeing the withdrawal signs. I may not know much within the ICU nursing realm, but I know psych nursing. I recognized the detox symptoms from the get go but again had to advocate my concerns to the team. It turns out that she must be pretty sensitive to already have detox symptoms because she was only on the precedex five days. It usually takes kiddo's a week to develop a physical dependence. Her providers seem to be doing better about listening to me and Sean's concerns. I guess if you call it right enough you get a bit of credit around here. 
Anyway so that's been our major concern today. I never thought in all my life that my acute psychiatric nursing skills would be put to use on my month old child. Life can have a sick sense of humor sometimes.
Despite the challenge of detoxing our sweet little baby we are so thankful that she is extubated, doing well and not currently staring down the barrel of an open heart surgery. If we can buy her a couple months she'll be in such a better place physically/anatomically to handle her upcoming surgeries. 
Please pray she continues to do well and grows like a champ! 

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