I begin this blog so that my aunt will know what all she’s went through when she is well enough to take over the blogging herself. You’ll never meet another person who is such a fighter as my Aunt Kathey. My aunt suffers from a nasty disease called, scleroderma. It’s controlled her life for several years now, but most severely this past year. In the past 2 ½ months, she’s been hospitalized 4 times. This last time has brought us to this blog. The scleroderma caused necrosis in her small intestines causing her surgeon to remove as much as possible of her small intestines to save her life, but yet leave enough to allow her to live. We cannot live with out the precious organ of our small intestines. She has the bare minimum.
As of today, 4 days after surgery, we still do not know if what remains has necrosis or even scleroderma. The surgeon took as much as possible of what was diseased and dead, leaving what she had no choice to leave… not knowing what could be left on the fringes of what is left…
Kathey remains in ICU, in a critical state and very severe pain. We had hoped that on day 3 the ventilator would come out, but after her surgeon’s partner evaluated her he made the decision not to remove it anytime soon. The explanation made good sense and is in the best interest of my aunt, though I’m sure at this time if she knew our thoughts, she’d probably hate us all. She wants it out, along with the NG tube and she wants to come home. She hates being in hospitals. Due to the high amounts of pain medications she is on, the smallest increase or decrease could cause her vitals &/or respiratory distress requiring her to be incubated again and time is of the essence and Kath doesn’t have time -- that’s how critical she is. Thus the need for her to continue with the ventilator. The good news she is breathing 80% on her own.
I seen for myself what too little pain meds do to her vitals and breathing. It’s not pretty. My heart was broken. My aunt DOES NOT COMPLAIN -- EVER!!! And to see her in so much pain…. I couldn’t take it! I did not want to leave her side. NO ONE should ever have to endure so much pain as she was having to endure at that time. She was getting X amount of drips of pain meds per hour at the time and then it was upped to more than 3 times the original amount of continuous drips per hour.. Once the drip was changed, my aunt was able to calm down and sleep once again. As well as the meds for sedation were able to kick in. She has such a high tolerance to meds that what would normally work for you and I -- it takes so much more for her.
Now, her surgeon’s partner wants to try to back her off some of the pain meds, because he doesn’t like her being on such high doses. I wish they wouldn’t reduce her pain meds anytime soon. She needs to rest to heal. It’s too soon to put her through this right now.
She still only has a 50/50 chance of survival at this time. Don’t make her suffer…
We all pray -- All the time…
If you are reading this … Please pray for my aunt… She needs all the prayers she can possibly get at this time. I do believe in the power of prayer, as does she. This I know.
God bless all!
-- Tonya
As of today, 4 days after surgery, we still do not know if what remains has necrosis or even scleroderma. The surgeon took as much as possible of what was diseased and dead, leaving what she had no choice to leave… not knowing what could be left on the fringes of what is left…
Kathey remains in ICU, in a critical state and very severe pain. We had hoped that on day 3 the ventilator would come out, but after her surgeon’s partner evaluated her he made the decision not to remove it anytime soon. The explanation made good sense and is in the best interest of my aunt, though I’m sure at this time if she knew our thoughts, she’d probably hate us all. She wants it out, along with the NG tube and she wants to come home. She hates being in hospitals. Due to the high amounts of pain medications she is on, the smallest increase or decrease could cause her vitals &/or respiratory distress requiring her to be incubated again and time is of the essence and Kath doesn’t have time -- that’s how critical she is. Thus the need for her to continue with the ventilator. The good news she is breathing 80% on her own.
I seen for myself what too little pain meds do to her vitals and breathing. It’s not pretty. My heart was broken. My aunt DOES NOT COMPLAIN -- EVER!!! And to see her in so much pain…. I couldn’t take it! I did not want to leave her side. NO ONE should ever have to endure so much pain as she was having to endure at that time. She was getting X amount of drips of pain meds per hour at the time and then it was upped to more than 3 times the original amount of continuous drips per hour.. Once the drip was changed, my aunt was able to calm down and sleep once again. As well as the meds for sedation were able to kick in. She has such a high tolerance to meds that what would normally work for you and I -- it takes so much more for her.
Now, her surgeon’s partner wants to try to back her off some of the pain meds, because he doesn’t like her being on such high doses. I wish they wouldn’t reduce her pain meds anytime soon. She needs to rest to heal. It’s too soon to put her through this right now.
She still only has a 50/50 chance of survival at this time. Don’t make her suffer…
We all pray -- All the time…
If you are reading this … Please pray for my aunt… She needs all the prayers she can possibly get at this time. I do believe in the power of prayer, as does she. This I know.
God bless all!
-- Tonya
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