1:30 PM update: She is out! Surgery went well. The surgeon didn't like the look of her original shunt site, so her new shunt is behind her left ear instead of her right. Wr have a bald baby, but that will mean all the hair grows back at one length!
She came back to her room breathing on her own. This time I worked with the nurse to prepare her meds and get them ordered ahead of time, and she did end up needing them quickly because she woke up quickly again this time. I'm currently holding her in my arms, and we are watching Monsters University on the hospital TV. Let the healing commence! Thank you Lord for seeing this little one through another surgery and strengthening her spirit so she can rock this recovery!
Noon update: Just went back to the OR!
10am update: We are still waiting for Annelise to go back for surgery. There was a more emergent surgery that our neurosurgeon was needed for this morning, so we are waiting for him to finish up with that person and then it will be Annelise's turn!
She has her days and nights all flipped around right now, so she is sleeping peacefully, since the sun came up. She had her first routine abdominal ultrasound this morning (kids with T18 have a higher prevalence of hepatoblastoma/liver cancer, so we are screening her to catch anything that might ever show up early. No reason to think she has any liver issues at this point) as soon as the tech put the warm US jelly on her belly, she knocked out and was sound asleep!😆
This morning. Her sleeping heart rate dipped lower and stayed lower than it has ever. The doctors are aware, and her cardiologist is the one who is rounding at the hospital this week thankfully, so he will be consulted, but they don't think it's an indication of a new problem, since she historically does have heart rate dips when she is sleeping, and she can be easily roused, everything else looks good about her. She's so smiley!
I have been re-learning the lesson that trusting God doesn't mean trusting God as long as He does just what I want Him to... but it goes along with recognizing that the Lord is the one in control, not me, and if I spend any amount of time thinking about the order of things... that's exactly how I want it to be. The peace comes in the letting go of the things I just can't control... the list of things that I can't control is quite extensive. There have been a lot of learning opportunities in the past few days where I've had the choice to trust or try to take control. What I know about learning opportunities from all my years working with behavior analysts is, that the more you have, the more chance you've got to really learn it! I feel like this was a very big week for shaping my soul. Counseling came in the form of a fantastic attending doctor who took the time to talk about personality types, medicine, and goals for quality of life with Annelise. Basically, do I want to know as much as the respiratory therapists do, or do I want to know what can work for Annelise, even if I don't fully understand the theory behind it, and then move on and enjoy time with her, rather than research the respiratory system that is super complicated and will never result in me having the perfect answer for her breathing needs? It was a relief of a perspective shift after talking with him.
While waiting, we got to share Annelise with a group of touring training EMT's! It was so fun to talk about Annelise with them, and they were so curious as to how they can best help her. I hope this little exposure to a baby with a trach and gtube will help shape their questions and learning as they finish up their EMT training.
