Some months I think it would just be better if we rented an apartment next to Cook Children's Hospital. This past week it has been our home away from home. It's only 25 minutes from our house, but that drive gets really old. Especially in 105 degree heat with a child who screams when you stop at a red light or stop sign.
I hate to sit here and complain, but that's what comes naturally when I don't sleep. And I haven't been sleeping. Because Kendall hasn't been sleeping!
She short of it is this: Urinary Tract Infection, put on antibiotic, developed hives, developed high fevers, blood sugars out of control (we're talking over 500 with high blood ketones)changed antibiotic, determined she has a penecillin allergy, restless nights and inconsolable crying. Blah blah blah.
I've told her medical history a thousand times over (because I forgot to print it out before we left.) Then today she had a two hour pre-op appointment for her Examination Under Anesthesia tomorrow morning. I had to go through the medication list, reasons for turning down the IMBG scan, Mitochondrial debocle, etc... with the anesthesiologist. I did all this while Kendall screamed and yelled the whole visit!
My brain is fried. But hopefully we will find out tomorrow that her eye pressures are in a safe range, and will leave with a more accurate prescription. We then plan to drop off her Rx and hopfully get new glasses and sunglasses before our vacation to the beach. (or at least before school starts.)
The biggest upset for me the past few days during my drama-filled-no-sleep hours, is that Aetna has declined Kendall's wheelchair. She's grown out of her current one, and they are now saying it is not medically necessary and more for convenience. Whatever. Am I suppose to let her lay in bed all day? By the way, she sleeps in bed with us, is getting too tall, and rolls too much for any of us to get any rest. We are also in need of a Sleep Safe Bed, but I'm too beat down to start that process!
Please keep her in your prayers tomorrow morning at 5:30am (being Type 1 Diabetic has its advantages, she's the first patient of the day) as she goes under general anesthesia. Hopefully the breathing tube will not cause its usual trouble in our sweet girl.
Hudson Rests in His Hands 5/14/2007-1/2/2022
3 months ago
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4 comments:
Good luck tomorrow! I hope everything goes very well!
P.S. I so feel your pain about the crying at red lights and stop signs. Gracie has done that since birth and it can be so horrible. If we have too many lights in a row, she will continue to scream until we get out of the car. It is torture!
Keeping you and Kendall in my prayers!
Hoping and paying that the morning was uneventful.And home will come soon for you all.
PS. We have Aetna. Can't stand them. This mini new wheelchair is so not going to last Zoey long and we are thinking about a motorized one ... dreading the ordeal that will take place with the insurance company. Can't something go smoothly?Ever.
Hope everything goes great tomorrow morning.
The sleep safe bed was the quickest piece of equipment we got for Finnian. I was shocked.
Is there a wheelchair clinic at Cooks? they would work with your ortho to get the approval and justify her need for a new chair. We will be doing that next year for Finnian we are looking to get a Zippy IRIS for him.
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