Thursday, January 14, 2016

The Known and Unknown

Two nights ago we had another close call with Avelyn. It's difficult to think about, let alone write about hence the two days past. Anyway she had been having a pretty good day. Her continuous feeds by NG tube had been bumped up and she seemed to be tolerating that alright until the evening when she got a little gaggy. When she started gagging I went ahead and turned them off. Not a half hour later she started to have a bowel movement and became increasingly upset. There was no calming her, she continued to escalate for a few minutes. I tried everything. Then I noticed her cry started to weaken, not like she was calming down but like she was becoming lethargic. I had been watching her monitor and vitals throughout this whole process too. At the point her cry started to weaken her pulse started to trend down. It was in the 190's when she was upset and slowly it started to come down, simultaneously she was getting paler and mottled but still trying her damnedest to cry. The combination of symptoms had me very concerned very quickly. I used the call light and said "I need a nurse now! My baby's heart rate is dropping." 
Now you'd think that would get a pretty concerned response or an immediate action. Nope. The response I got was "ok the nurse will be in in a few minutes."
True story. I was pissed. I waited less than 30 secs before putting her down on the bed (she is connected to a lot of wires and leads so she can't go more than a couple feet from the bed), at this point her pulse was dropping close to 100 bpm. I rushed out of the room to yell for help. The nurses were behind the desk laughing at something. I don't think the medical receptionist had even told them I called out, let alone my message. Four came in. As they came in I said she's going into lactic acidosis. She's done it before and had to be bagged and reintubated. They insisted on getting multiple blood pressures because the readings were within normal limits. I feel like it took me yelling "something is wrong get the doctor!" before she was paged. Then it seemed like I had to tell the doctor multiple times that she was obviously very acidotic before she called a rapid response for the ICU team to come up. By the time the ICU team came up I was ready to start bagging her myself. I don't think the floor provider or nurses realized how ill she was or how tenuous her state. I did. I had seen it before on December 26th. Even though I caught the episode very early on I couldn't help but think I was going to lose her do to their inaction. It's the worst most gut wrenching feeling in the world and it's becoming way too familiar. 
Thankfully she was in a better place before the event started and therefore didn't decompensate as much. Her lactate still got up to 10.9 and she still nearly had to be reintubated but got by on high flow or positive pressure administration. 
That night she got blood and medications to balance her ph back out. She then got blood again this morning and has seemed to be doing better since then. 
Despite looking and seeming a bit better after the blood administration the doctors are still worried. Worried about what may be going on that very mild anemia and seemingly normal baby things like pooping, crying, and eating can push her into such a dangerous and sickly state. So they think it's best to push up the cardiac cath to tomorrow. She'll go in tomorrow morning for what will likely be just a diagnostic cath, to get a good look at her specific anatomy and physiology. Mapping her heart and vessels will allow them to make a better and more specialized treatment plan and timetable. Right now there are so many unknowns-it's horrifying to think of all the possibilities. At least once she has the cath we'll know what we are facing, even if it's not the news we hope for. 
I am sure I'll blog tomorrow to update and/or as a distraction for  myself during her procedure. This whole experience has been a lot to handle, and it's been so hard on our little one's tiny fragile body. Pray she can find peace and vitality soon. She needs to grow to be ready for her next major surgery in just a few short months. All these setbacks could have dire consequences if they continue.

Ps I am too drained to proofread. Sorry.
Best wishes to all.


  1. Even through the adversity, she is still smiling. You are blessed to have such a beautiful baby girl! Prayers sent up!

  2. I pray she will be on the road to complete healing ASAP. "Lord, hold her in Your loving arms and calm her when it is needed. Please heal this wee child and give her family your rest."