In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Saturday, January 17, 2009
DAY 10: HIGH FEVER
The doctor wanted to extubate, but we were not feeling it... Deedee had a rough Thursday, and looked quite unhappy on Friday morning. I felt her warm, but the temperatutre was no showing above 98 degrees... until fever finally showed up at 103.4 degrees. She was the whole morning and afternoon with a fever that wouldn't go away. As Mark got in time for his night shift, they were going to do a urine sample to test why she had such a high fever. The drama never stops...
Deedee was looking miserable these last two days. Her upper teeth also have made an apparition, so she must be in pain also because of that. Seems all teeth are coming out at once! Poor Deedee looks so helpless... They keep poking and probing for tests and it is all so annoying! She's had no real rest as people (doctors, rt's, nurses) keep coming and going.
These last two days were not too happy, but we expected that as they are the peak days for RSV. It's been secretions galore! And the increase of secretions in the back of mouth/nose makes me believe that perhaps she also has sinus... I have that problem and it gets worst with this weather. Deedee's troubles seem parallel to the weather as well... Deedee is taking the "being mommy's clone" issue too seriously. Chill out, girl! We need you to come back home! Hospital stays are NOT funny!
Her g-tube may also need to be changed, so we took her mickey button over there to see if later on in the week they change it. That would mean one less outing to a doctor's office during Winter.
Yesterday the nutritionist passed by, as the doctor is obsessed with Deedee being fat. It was the most funny thing! She shrugged and said that Deedee is already taking the less amount of calories, and that her weight rate when compared to her growth rate is ok. It's just that the girl is truly tall and big, not fat. I just find it funny. The doctor seemed to believe we feed Deedee extras or something... We don't. She just has it in her genes. We just hope she slows down the growing, so we can keep handling her. Right now she is 35 inches tall, and weights 35 pounds.
So... We've had drama. Not a dull moment... Deeva keeps hanging there. At least by the late afternoon she was moving her right hand a lot, which means she is regaining some strength. We may expect an extubation try perhaps in Sunday... If fever vanishes forever. We'll see what happens.
As a side note, Israel was re-admitted to PICU. Many prayers and good vibes sent his way as well.
This is our favorite Psalm, as it sums up all we believe. May God shed His presence on all of us, in sickness and in health.
PSALM 23
The Lord is my shepherd: I shall not be in want.
He maketh me to lie down in green Pastures,
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for his name's sake,
Even though I walk through the valley of the shadow of death,
I will fear no evil:
For thou art with me,
Thy rod and staff they comfort me.
Thou preparest a table before me in the presence of mine enemies:
Thou anointed my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life:
And I will dwell in the house of the Lord for ever.
10-4
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2 comments:
You are so smart to listen to those mommy-vibes. I swear they're better than any machine reading, test or assessment. I think about you tons from our little corner of our PICU in Utah.
Hey Viviana,
I'm just curious as to what they think is "acceptable" to extubate. her lungs have to be clear, sats above 94 with no oxygen and no fever. I keep Kyle on the tube for at least a day or 2 once his lungs are clear, just to make sure. It won't work unless those things are met. I saw on the first try, they said her lungs were improving. That's not good for them, they can't handle junky lungs and extubation. We are praying for you all. mommy to kyle james, type 1 sma.
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