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?
Margaret went into the OR early this morning. She was not happy when she saw the surgeon’s hat. She really fought the gas over her trach. She knows the drill by now, almost 20 procedures in, and doesn’t like it!
We are back in our room recovering. It is brightened by 3 beautiful balloons from Sunday school friends.
The airway looks good now. The grafts took. More will be determined next week depending on how her airway reacts without the stent.
She came out of anesthesia quickly and angry, coughing and thrashing ; really thrown by her new upper airway and possibly aspirating her own saliva. She’s calmer now with help of narcotics and Diego.
We meet with speech therapy later today. She has a lot to learn to protect this new airway if she is going to eat by mouth again.
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Future Hangs on a Sneeze
There’s a new level of vigilance ordering our family life. After our surgery was cancelled the day before we left for Ohio, we learned Margaret needed to be well for 6 weeks prior to this major surgery in order to withstand the 5-8 hours of anesthesia and the recovery of an area likely swollen by respiratory infections.
Our hands are cracked and bloody from all the washing and sanitizing. Vitamin C, Elderberry, and Echinacea are staples of our diets. The juicer has never gotten more use. Even the kids have gotten over their fears of drinking something green.
We’ve had lots of coughing and sneezing, but avoided extra oxygen at night. Every sneeze catches my heartbeat as I wonder — allergy or virus. With GA’s loopy weather, it looks like it’s been mostly allergies so far. But their similar symptoms have kept us on a roller coaster of Will She or Won’t She?
The date for the surgery has been set April 3 and 5th and it looks like we can keep it — so far, so good.
Yes, this is the week right after Easter when all the other ministers are at the beach (more time to pray for us). Overall, it is a better time to be in Ohio than February, so we hope for a day or two of sweater weather (as opposed to long-johns and down jackets).
I don’t have the intricate plan of helpers that I had last time. I’ve learned to simplify since it took weeks to recalibrate all the moving pieces after the cancellation. But basically, the whole family (James will miss school with a doctor’s letter) will leave town for those two weeks. David and James will return by the 13th for a wedding. And Margaret and I will stay for another week or so depending on her recovery.
I’ve made a friend with a young adult on line who just had this surgery and it’s helpful to know someone who can articulate the pain and swelling and timeline of recovery. It’s not pleasant. I hope MG finds her strong spirit again. She’s been experimenting with three-year-old stubbornness and tantrums lately. Good to see her typical developmental side coming out but she’ll need that extraordinary spirit to get her through April.