As I expected, they were really off schedule and it was 2:45 before I came out from helping her off to sleep in the operating room. I have accompanied Eden into the operating room many times and held her hand and looked into her eyes as she drifts off to sleep. Today she was scared. I have never seen her react like she did today. She was trying to be brave, and not throwing a fit by any means. It was actually way worse then a tantrum... She was holding on incredibly tight to my gown who both hands, tears quietly and slowly streaming down her cheeks as she looked around the room. I did my best to reassure her, but after what she has been through in the last week, there is nothing I could say to take her fear away. I did my best to help her, telling her that this time she wasn't coming out with owies, they just wanted to take a look to see if her tube could come out tomorrow. They hooked her up to the gas and she went to sleep very peacefully.
After the procedure was done I met with Dr. Prager for a bit. He said everything looks like it is healing very nicely. She has some granulation tissue in there so they will give her a course of steroids to help calm that down. Usually on week one things do typically look very good since there has been a big tube in there holding things open nicely. I was happy to hear though that so far he feels positive and is happy with it.
So tomorrow she will get a round of steroids and then the team will converge to remove the tube. We aren't expecting a huge problem, it's more that she may need periodic help from a CPAP machine to give some positive pressure to help her airway rest and stay open. We shall see. Either way, we will for sure be admitted another week until the next bronch which will be next Thursday or Friday.
So it was overall a positive conversation with Dr Prager, and I hurried up from the waiting room back to our room in the PICU hoping I'd beat Eden back. As I was rounding the corner of the unit I saw them pushing her bed back into the room. I came in to about 10 people circling her bed talking about the notes from the OR. Two men from respiratory were holding her tube in her nose because it wasn't taped down. I knew immediately this wasn't going to be a good way to wake up. Imagine, waking up hungry, uncomfortable, completely dioriented with people surrounding the bed and two men with their hands on your face. That's terrifying under normal circumstances, and then given this past week, it's down right traumatizing. They are chatting away as I see her beginning to wake up and thrash around a bit. She started crying and then they started holding her down to make sure she didn't move so much that the tube came out of her nose. At this point I just kind of pushed my way through the crowd and climbed up on the bed with her trying to reassure her that she was ok and I was there. They finished all the notes and one by one began to leave the room. Then the two respiratory guys started working on the tape. First they had to remove all the current tape on her face and then replace it with new tape, all while holding that tube in at exactly the right depth. It was bad. I could tell it was painful and scary. The worst part was that I had to be part of the team holding her arms down while trying desperately to comfort her. Inside I was boiling and angry, but I was trying to stay calm for her. It took forever, because apparently the guy who was doing the tape is fairly new and is still trying to learn. The other guy was kind of talking him through it. They were both trying to be soft, and they were speaking kindly to her, but what they had to do wasn't a nice thing at all.
As soon as they finished, I very calmly began to question why this is the process. She just came from being under general anesthesia where she was completely asleep and still. Why couldn't they remove and replace this tape while she was still under? Why wait until she is awake and then torture her? He was very nice and explained that the respiratory team has a specific way that they like these to be taped. The anesthesia team won't do it, so instead they bring the patient back up and their team can finish the tape job the way it needs to be done. I explained to him that they need to think of the child and how scary and uncomfortable that is. I told him I don't understand why the respiratory team can't go down to the OR and tape there, or the anesthesia team bring the patient back up still asleep for it to be retaped immediately. He thanked me for my feedback and said he agreed and would try to work on the process going forward.
So incredibly sad and frustrating. So they left and I snuggled up in the bed next to Eden to help her feel calm and comfortable. It took her a bit to settle down, with her little sad sobs, but then she eventually drifted off to sleep. She is now resting and I'm still trying to calm myself down. Poor baby. Every time someone walks into this room she turns and reaches for me and I have to be by her side for everything. I don't blame her one bit. I wish I could take this all away from her, but unfortunately I can't and that's something I have struggled with for the last five years.
3 comments:
Oh Lisa, how my heart hurts for you as well as my little granddaughter. Eden is so blessed to have you as her "mama bear". Someday, if not this life, than the next, we will better understand. For now, we walk by faith. I wish I were there with you. Love you all!
Oh gosh.... I feel so bad for both of you! I think sometimes the nurses forget that their job isn't just a job. These are real people and sometimes they unintentionally become desensitized to that. I am glad you spoke up and helped remind them of how it really is! I am so glad you are there and able to be by Eden's side.
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