Written August 1, 2013 8:03pm by Beth Waltemath
We have a date to return to the ENT surgery team. September 12 to 16. We will scope on Thursday and admit her for three nights of capping.
We wish we could prepare, train for this like a runner increases his cardiovascular gradually, but that’s not how this team does it. Run the marathon first in this case.
We have been in a holding pattern this summer when we expected to be Free to take family vacations and trach free travels. Our nurses had dreams of moving on too. One is due with her first child soon. Disappointment has a way of testing the nerves.
Since our failed test, Margaret has showed new anxiety over doctors visits and definitely the little plastic cap. She found it one day in a box and said ” mommy I need to return this to the hospital. I don’t like it.” This week she cried I. My arms while feverish in the pediatrician’s office begging to go home even though the doctor barely touched her.”
We are itching to move on! And now she has an all over skin rash . She scratches up against everything like a cat. Oatmeal baths, calamine, Benadryl, cool layer pajamas. No relief. “Mommy, mommy why? Why?” Each day the bumps just multiply. What is that sensation that torments us under the skin, in our
heads? What causes it? Where is its source? If waiting it out is the only treatment, how long can you bear it?
Two Steps Forward
Written June 5, 2013 2:15pm by Beth Waltemath
We are back at the hospital. We came for a follow up Bronchoscopy. It was supposed to be a quick trip so we tried flying for the first time. It was not as easy as we hoped with her equipment and the plane had mechanical problems which led the pilot to come to a lurching stop on the runway right when we’d excellerated to the point of lift off. Enough of a scare to make anyone lose their breath in fear!
More surprises were in store but now they are potentially good. We have been admitted to the complex airway unit again. They want to do a capping trial and sleep study. This is early for this step forward but they felt like she had 3 of the 4 signs that she is ready to try this. We are still several steps from decannulation but this , if it works, will be a good advancement.
It does delay my return till the weekend or longer.
Thank you for your prayers.
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.