Bated Breath.
For the past several years I have been having dreams where I can’t walk. A feeling like one leg is paralyzed; too heavy or too weak to move. My lack of mobility happens no matter where my subconscious has placed me - work, grocery store, amusement park. Until recently it hadn’t occurred to me to research what the inability to walk meant in a dream.
Cool, subconscious interpretive answer: Dream legs often tend to represent the dreamer's underlying sense of self-confidence or level of support she feels in the world. In your dream, though, you are stuck. You just can't seem to get anywhere…this is directly connected to something in your emotional or waking life. {Paraphrased from Daily Mail}
Scientific and logical answer: “During the most dream-filled phase of sleep, our muscles become paralyzed, preventing the body from acting out what's going on in the brain.” {Quote from Live Science}
For the purpose of this blog post, we will obviously be using the cool, subconscious interpretive answer…
I do feel stuck. Absolutely. I feel as if I have no options to get unstuck. I’ve been hanging out in quicksand for a few years and have come to terms that I will be here for a few more. To struggle only makes it worse. I recognize that I have zero control (perhaps I never had any - but it sure felt better when I had perceived control) and will not regain any control, perceived or otherwise, for the foreseeable future.
On February 15th, Elliott had a Bronchoscopy (where Doctors put cameras down her upper and lower airways to determine why she still needs a trach) and an ABR (a hearing test under sedation where Doctors watch your brain waves react to sound). We know Elliott can hear; we weren’t worried about the results of the ABR but it is nice to get official confirmation as asking a 2 year old to turn her head the direction of the dog bark or bird chirp 50 times doesn’t work past the first two times…and well, apparently twice is not enough data.
We were however worried and eager about the Bronchoscopy. Elliott has had her trach since 12/12/16. We were over the 2 year mark by 2 months and we still didn’t have an actual reason why Ellie needed a trach in the first place. The theory remains that she was so small, her airway included, that she needed additional strength and airway girth to breathe without aid. She has made tremendous progress these past 2 years but has plateaued for the past 6 months or so and we, along with her Doctor, wanted to understand why.
The Doctor comes out after the Bronchoscopy with medical pictures. The kind on that shiny photo paper displaying images of the inside of someone’s body. Tissue that is perpetually gleaming and indistinguishable from organ to organ. He could’ve brought us pictures of her colon and told us it was her trachea - we wouldn’t have known the difference. He first talks about her tonsils and adenoids - both being very enlarged. So we agreed to remove the tonsils entirely and majority of the adenoids that very day while she was still under anesthesia. In kids with cleft palates, removing all of the adenoids tends to harm their ability to swallow properly so he would leave about 20% remaining.
Much heavier than a tonsillectomy, was the news our Doctor next delivered - “your daughter needs an SSLTR, (Single Stage Laryngotracheal Reconstruction) which is an airway reconstruction”. After some back-n-forth, we understood that her airway is collapsed above the stoma where her trach sits and below her vocal chords, in addition she has some general airway narrowing - both of these being causes for not being able to breathe when we cap the trach (put an actual cap over the trach as she attempts to inhale and exhale via her nose/mouth and subsequently loses color from her lips before we remove the cap and I hug her for about an hour as she squirms to escape...) The procedure is roughly 5 hours and entails him taking a portion of Elliott’s rib cartilage, using that to rebuild the segment of collapsed trachea, stenting it open while it heals, and closing up the stoma where the trach currently sits. She will spend the next 7-ish days sedated, in essentially a paralyzed state so that the airway repair can heal fully. She will be intubated through her nose (a breathing tube inserted via her nose) and hooked up to a ventilator that breathes for her. After the 7 days or so, the doctor removes the intubation tube, and puts her on C-Pap to offer her some pressure as we wait with bated breath to see if Elliott’s breath is abated… … …
Feel free to glance back at my Trach-edy post to read about the literal worst day of my life and understand why this surgery is so fucking terrifying for Brad and I. (Second time to drop the “F-word” in this blog… same topic. Still worth it.)
I have PTSD from 12/1/2016 and I am being forced to relive it. We understand our daughter’s airway needs repair but the whole idea of this SSLTR causes my eyes to well up with tears in nanoseconds. (True story - one morning as I was getting coffee at Starbucks, the surgery crossed my mind while grabbing the half-n-half container. Highly visible streams of salty water dripped off my face and onto the counter before I could finish opening the cap. I’ve never been more thankful for freshly filled napkin dispensers than I was in that moment.)
This is my prediction for how the week of surgery will go for me:
I will cry every day, likely multiple times. I will volley between immense anger at God, to questioning His very existence and the role He may or may not play in our lives, to fiercely begging for His mercy and miraculous intervention in my child. Rinse. Repeat.
There are two potential outcomes of the SSLTR:
The surgery is a success and Elliott leaves the hospital trach free, breathing on her own via her nose and mouth. We no longer need nurses to watch our child, we no longer receive monthly medical supply deliveries with trach paraphernalia, we no longer do regular trach cares (where we clean the stoma and change out all the dressing), we no longer do monthly trach changes (where we take out the old trach and swiftly put in a new trach), we no longer have to suction her airway 24/7 to clear out secretions. Elliott can take typical toddler baths. she can swim, go to the beach, play in sand and won’t need to wear bibs to distract her and other kids from grabbing at the trach like the built-in and life-threatening toy that it is.
The surgery is unsuccessful and Elliott needs a trach put back in. She will struggle to breathe and no amount of support (C-Pap, high flow nasal cannula, steroids, airway ballooning, etc.) will help. She will get another tracheotomy and we will likely have to try this surgery again in a year. Or two. Or more. Nurses continue, medical supplies continue. trach care and changes continue, suctioning continues, an altered life continues.
Outcome #1 is a literal dream come true. It is what I have prayed for since Elliott received the trach 2+ years ago. It sounds too good to be feasible. And while it doesn’t come without consequences (follow up scopes of her airway in the OR. First one being a week post surgery and another 3 weeks later. Along with constant worry that a cold, upper respiratory infection, strep throat, or any other typical childhood ailment will cause her to not breathe), it is still infinitely better than outcome #2.
Elliott’s SSLTR is scheduled for May 3rd. So I am shamelessly asking everyone reading this blog post to start praying, meditating, wishing upon stars, doing anything that you believe in to ask for outcome #1. We are not discriminatory towards anyone’s beliefs - we accept all forms of good energy and good will sent our daughter’s way. We’re so nice like that.
6 weeks people. Get after it.
Please.
My dreams make more sense when I really take the time to investigate. I live in quicksand, consciously and even subconsciously. Years from now, I imagine myself abruptly awaking from a dream where I walked with ease in whatever scenario my subconscious conjured up. At this point in my life, I will likely be caught up in the chaos being a parent can present. Thereby, taking for granted my daughter’s ability to breathe without effort, her heart having been repaired, and her little brother chasing her around while she giggles audibly. As I sit up in my bed, it will hit me in that moment - the quicksand is gone. The years of pain and trial are but distant memories. I will remind my self to take nothing for granted because I had forgotten how much every ounce of my being longed to watch my daughter thrive.
Until the NexT21,
Aubrey
PS - Happy World Down syndrome Day. A day I didn’t know existed 3 years ago, and now celebrate fiercely. May you all celebrate the differences people with Ds have to offer and embrace them as the gifts that they are.
