Written April 17, 2013 1:24pm by Beth Waltemath
We can move forward slowly. Today’s scope showed swelling: “as to be expected,” but also the grafts still taking nicely. To me the whole area looked puffy and oozy like a jelly yeast donut, but our surgeon and his fellow are satisfied with the results and tell us to return in 4-6 weeks. We hope to plan it for the first of June.
Apparently the aspirating she is experiencing is disappointing but “not uncommon” and most likely will resolve in 6 weeks with the help of a feeding therapist and as the swelling goes down. “Persistent aspiration is rare” reassured the surgeon before our scope.
We also had them check her exhalation pressure when she uses the PMV (speaking valve) and were cleared to use a modified one (with 1/16 drill bit hole) to encourage better swallow and eating.
Overall, today brought good news. They will still only tell us what is happening one step and no further ahead. But considering the range of other possibilities we’ve heard from veteran trach parents: grafts dissolving, dislodging, airways swelling closed, stents needing replacement, new rib grafts, multiple balloon dilations etc, we feel this is the best realistic outcome to say we are swollen but on track and no further intervention needed for now.
My dad flies up tomorrow morning to help me drive Margaret to Nashville for the night and then back to Atlanta. I can’t wait to start Harry Potter, Book 2 with James!
We were discharged this afternoon, just in time to take home a happy bouquet and Dora balloon from our Sunday school teachers.
Honestly, it’s been really rough. Margaret isn’t doing as well as we’d like. She is choking on her saliva and aspirating everything she eats. Think the worst cold you ever had–unable to sleep or lie down without coughing. Think about salivating over your favorite foods and then everytime you open your mouth, what is in it goes down the wrong pipe!
After a chest X-ray that showed no aspiration pneumonia (yet), the hospital said there’s nothing they can do that we can’t do ourselves so we took Margaret home with an NG tube in her nose and a feeding pump so she can receive all her meds and nutrition that way.
She was on an NG tube for the first 1.5 years of her life. I struggled long and hard to get her to eat by mouth so it’s hard not to feel mad and sad about this setback. I’ve considered it my greatest accomplishment in life to teach her to eat (once I learned how truly difficult it was for a kid who wasn’t allowed to learn in the first 4 months when it is instinctual). Beware of tempting wanton gods with our pride!
Did we give her a wider airway but not a functional one? Only the future will ease the doubt that keeps us awake.
Time, practice, more practice, those are what is in the arsenal for our plan of care.
And so we step backwards and begin again.
David returns Saturday. James on Sunday. Margaret and I will be here next week for follow-ups. We won’t know till another scope on Wednesday how her airway is reacting to the grafts with the stent out and if we will need further dilation or to put the stent back in and stay in Cincinnati longer or return home.