Good evening, it has been a busy couple of days here for Ruby (And the rest of us)! The corking trial yesterday went really well, the RT was impressed. She only did an hour, but it went smooth and we were hopeful for today. This morning we did another trial and it only lasted 10 or 15 minutes because she kept coughing so hard the the cork (a cap) popped right off. But her SATs were good and we decided to try again later.
This afternoon she was corked for just over an hour, including a feed. She did really well and drank 50 of the 100ml before tiring out. Considering her average is 70ml, thats really good! After that she had a nice nap with the airvo on, we wanted to give her a break. When she woke up we slapped the cork back on and she was tolerating it well again! She hadn't pooped in three days, so I asked the nurse about giving her a glycerin suppository and we decided to give one to her right away. She wasn't happy with that.
Ruby got very mad and cried as loud as she could, the poor thing. But it was so good to hear because she hasn't cried properly since before the surgery and this was a good proper cry. Her SATs stayed good and she was coughing everything up and clearing it herself so the nurse left me to it and eventually she calmed down and fell asleep. Once asleep I put her back on the airvo and that was the last corking trial for the day.
(She had a medium poop this evening)
It sounds really rough, but she actually did really well with the different challenging scenarios. Especially eating and using a soother since it could be hard to remember how to breath through your nose after so long without. She is a rock star (Ruby Rock star as some nurses call her).
Feeds are also going well since putting in the NG tube, she gets seen 100ml feeds a day. She takes as much as she can from the bottle, then we feed the rest through the NG tube (usually gravity fed, sometimes pump if it is a lot). I'd say she is averaging 70ml from the bottle. Her 12:00 feed she tool 91ml from the bottle, but ate too fast and spit up a bunch later. Her 6:00 feed was great and she drank 95ml with breaks and burps. Hoping that progresses well.
We are still waiting to talk to someone from ENT about the plan for removing the trach. Cardiology is following Ruby, so are technically in charge, but they aren't good communicators and aren't used to patients with trachs, so most of what they tell us is just guesses at the plan. We do know that ENT asked the nurses and RTs to start the corking trials and do them ad they see fit, only reporting back once she does 24-48 hours. Once she does that they want to take a look at her and decide about taking it out.
Lizzie is having a blast with Mama and it's been great to see Ruby again. Thanks to everyone for all your support and prayers ❤️ Starting to feel like the end is nearish.
