4.2.23 Scope

Ready for a little heart to heart? A potentially confusing mess of emotions? Great, then keep with me. Ed and I are like two zombies right now going through this round-robin over and over.

I want to admit two weaknesses. One, I am not strong at expressing emotion. Two, communicating takes so much energy for me. I am recognizing these less strong areas and sharing them with you, because it may seem like everything is under control, but it is an illusion. We have created really good routines that keep us afloat and we have sweet moments together, but it doesn’t stop. And there are times when we are spinning and spinning... I am left without words to communicate with people that I care about. I regret this. Talking is hard. I do care. 

We did have a night nurse start 2 weeks ago. Yes, that sounds hopeful and promising. So far it has been exhausting and difficult. Training, working with the new nursing company, and honestly just talking with the new nurse through her shifts… I am bone dry. I want to just throw in the towel and send the nursing company packing, but I’m trying to dig deep, make it through the first month, hope it will mean 3-4 nights a week with uninterrupted and full sleep. 

And then, while Aimee has been doing well since her last round of IV antibiotics, there are a couple challenges that I hinted at in my last post. Renal ultrasound last week had some concerns (appt to discuss with urologist is in the morning), issues with bleeding at her central line (vitamin k infusion seems to have resolved it, hopefully), and currently most pressing, issues with her trach. We change the trach monthly at home, but recently Aimee’s trach changes have become so scary that we feel that we can no longer safely put off doing a sedated scope. We are taking her down to the hospital tomorrow. 

It may not seem like a big deal, but it has been the most difficult decision we have made this past year. We are both emotionally and mentally struggling with it. If we want to continue being peacefully at home with low amounts of trauma, we must, but I feel sick thinking of wheeling her towards the surgery center, of walking the halls with an empty wheelchair again. All of the days that we were apart come back. My whole being revolts against risking it. We cannot, we must. Oh my girl. I thought I would never put you through any more of this again. Yet… 

We will take her down on Monday for what is only a day procedure. In terms of what she has been through, this is not a big ordeal, but the decision to do it has been. We had made a firm line. We would not put her through more sedation. We would do no surgeries. We would only take her in to stop pain and to do upkeep on the systems that are necessary to keep her at home. Yet… 

We are praying that there is an obvious issue that the otolaryngologist can simply remove the tissue that is obstructing the trach insertion or widen the airway in some other way. And that this procedure does not set Aimee back. 

For the last note, here is Aimee enjoying our weekly family movie last night.