So much for my day off. Poor Sue got evicted from our “room” at 3AM and tried to “sleep” in different areas without much success. She called me a little after 7 and didn’t need to say much, I knew where I was needed.

Of course last night and this morning were new nurses. The PM nurse had knowledge of Faith the AM nurse had never had her before. Once again we are at the point of frustration where not enough information about her likes and dislikes and what needs to be passed along again. Here is an example, we were sitting outside the room in the hallway. Both nurses were at her bedside, the new nurse and the newer nurse she was precepting. Suddenly we watched her O2 saturation rapidly dropping from 100% to finally 86% before we asked what did you just do. Their response was nothing except give her the Ativan she was due. I said you didn’t by chance “push it” did you? Her response, yes. Every nurse who has worked on Faith over the past few weeks knows that her Ativan and Methadone must be given via Syringe pump over 30 minutes (A machine that slowly injects medication into an IV line). This little bit of information wasn’t passed along nor was the medication order written that way.

We had another heart to heart with the ICU director about getting into a bigger room that can sustain Faith and a parent. We are currently unable to sleep or even sit bedside by her because of all of the equipment around her.

Our view of Faith's room. She's buried in there somewhere among the equipment and nurses

We also had a heart to heart with the nursing director about setting up our nursing bench a little better so we can have more consistency day-to-day with people very familiar with Faith and her quirky ways.

More baby steps forward and 1 week 1 day past the cardiac arrest so our tension level is a little better. Just a very frustrating and tiring day. Our friend Nina’s son Peter was extubated a day ago but as of 5PM they were going to need to re-intubate as he isn’t able to do it on his own even with the assistance of BiPAP.

3 thoughts on “DAY 39 – CHONY PICU – EVENING

  1. So sorry for the frustration. Hoping Faith gets a better room and you can be with her comfortably in her room. Still praying for peace and rest for all of you.

  2. Stay strong Faith, you are a beautiful young lady and have so many wonderful adventures ahead of you!! Keeping good thoughts & prayers for you and your family.

  3. Sue and Joe… Having ourselves spent nine and a half weeks in Morristown Nicu and then three weeks in Columbia’s Picu, , we totally empathize with every feeling, emotion, and thought that is coursing through you and striking your soul. Hold onto the fact that you are your little girl’s strongest and biggest advocate and no one can ever know her better than you…. God gave her to you because He knew you would fight for her and be there for her in good times and bad. When you feel your strength weaken or your steps falter , just look at the video and pictures you have shared with us in your blog, and gather your resolve from that delightful, impish laughter that only belongs to Faith.
    Thank you for sharing the video of Abby and Faith…. I just chuckled watching it and Bridghid was just so happy to see ” my friend Faith”. Take joy in the love all your children share with each other to help bolster your spirit .
    Love and prayers, Marinanci

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