I don't usually start threads here but I am asking for prayers
My daughter had a "routine" tonsillectomy on Wednesday. They are hoping to cure her apnea so she doesn't have to be on oxygen at night (along with her epilepsy, autism, ehler's danlos, and g-tube, she has now begun not breathing and we have had to rescue breath for her several times in the last couple of months)
so far she has refused all liquids and foods, spiked a high fever (she is on alternating oxycodone and advil right now...she never registers pain but has been crying...it is the only noise she makes...and clutching her throat)
she also has about a 2 inch long and 1/2 inch wide area on her cheek where she had tape placed when she was in surgery. She is allergic to tape so it actually pulled all her skin off...right now, despite our best efforts, it is scabbing over and continues to ooze.
she seized today and rubbed her face against the pillow and pulled the scab/skin off again.
we could use some prayers. we have been able to keep her hydrated through her tube but if she goes much longer she will lose all oral feeding skills.
if she is still running a temp, we will need to bring her back to the hospital.
Adinva 51, S20, S18 M24 total 6/15/11-12/1/12 From IDLY to H moving out 9/15/15-3/7/17 From negotiating SA to final D at age 50 5/8/17-now: New relationship with an old friend __ Happiness is a warm puppy.
I am sending prayers for you and Finn. I can relate to every word y,Ouse said (yes - even the tape) as I have been through it all with Ryan. And it really [censored].
Keep the faith. It Will get better. This too shall pass & there will be sunny days ahead.
You're in my prayers. D17 had hers removed some years ago, and it was awful. She, too, did not react well to the pain and bleeding. She wound up going into cluster seizures and was readmitted for another 4 days. I think they wound up sedating her so she was not awake, which also helped with the seizures. I pray for a good outcome for you. Hang in there, sweetie.
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
she is still not taking anything orally so we will be supplementing her diet by feeding through her g-tube, 2 ozs every 2-3 hours
she has lost over 2 pounds and has no energy
her seizures are increasing because of her inability to hold food in...
we have to take her off the pain medication she was on because she is having adverse reactions to it (like scratching all the skin off her side)
her face will scar but hopefully not too badly and will not require plastic surgery (again...hopefully)
I have to go back to work tomorrow because I have already missed 4 days (unpaid) and can't afford to miss more
Luckily, this is Cori's week off and he has some sick time he can use for Friday....
we have an appointment with her surgeon again on the 19th (Cori will be taking her) and we will discuss if we need to put her on continuous pump feedings through her g-tube
she has spoken a little bit today (yay)
but we are worried about her oral aversion becoming worse...
