It's an ugly day out. The heavens have opened and the angels are shedding their tears today. It's very dark and dreary. It's the ugliest day I've seen in sometime. Lightening everywhere. Flooding. Tornado watches and warnings. It foretells of sadness...
The doctor with Palliative Care came for an assessment today, along with Kath's surgeon and it was not good. This is hard to write. It's been very hard on the family, especially on my Grama... The doctors determined that the surgery was not successful and the scleroderma has completely taken over... Kath gave a DNR order and they have to abide by her wish. The ventilator was removed.
On the upside, Kath is awake and responsive today and it has been nice to be able to see her beautiful smile again. She's been able to talk some to us by a very gentle whisper with very few words. It's a wonderful blessing that we are so grateful for. To hear her tell us that she loves us has been music to our ears that we'll never forget, but will long to hear again, I'm sure in the near future.
She stayed pretty medicated throughout the day and night so visiting was very minimal as was communicating with Kath. Her energy is extremely low. Her fever is high and rising. Her pain is extremely high. It fluctuates between 8 and 10. She cannot be touched at all without putting her in worse pain. It's so heartbreaking. You want to hold her hand or rub her freezing cold feet, but it's too excruciating for her. She's breaking out in blisters from all the fluids - it has no where else to go. Just more pain... As if she didn't already have enough...
We pray they can make her comfortable and ease her pain. How will we make it without her...??? My Grama... My heart just aches for her... Mothers should not have to go through the loss of their children -- of any age!!
Showing posts with label scleroderma. Show all posts
Showing posts with label scleroderma. Show all posts
Saturday, January 23, 2010
Sunday, January 17, 2010
DAY 1 - WEDNESDAY, 13 JANUARY 2010
Grama asked Kath if she’d go to the hospital and Kath said, “Not yet, Mom.” Kath was hoping if she waited just a few more minutes the pain would go away. She hates going to the hospital. Though she is a retired nurse and spent many, many days, nites and hours in a hospital caring for the sick and injured she has always hated the idea of being the one in need of care. She’s independent like that. So in hopes that just 5 more minutes of waiting would bring comfort and release from the gripping pain, instead her blood pressure continued to drop unbeknownst to all.
Finally, she told my grama she was ready to go. So my grama asked her if she needed to call me from work or if she should call my son who happens to be home from work next door. My aunt Kath said call the squad (the ambulance), because she couldn’t stand up on her own. Grama knew she was even in worse trouble than 5 seconds before!
The ambulance arrived and true enough Kathey cannot stand up on her own. It took the paramedics picking her up, (she’s dehydrated down to not much over 100-pounds [our assessment is about 112]) and carried her outdoors to the stretcher where they began to take her vitals. The paramedic that took her blood pressure, was not happy at all and called it out 3 times to the one writing them down to assure he heard him. Her bp was 70-something over 40-something. They wasted no time getting her rolling down the road to ER. She was VERY dehydrated. I’m sure that by evening she would have been dead. She struggled to keep consciousness.
Dehydration is to be expected when one cannot keep anything down after several days of vomiting! Which was only a repeat of several episodes back to back week after week. She could never recover before she was repeating it all over again. Nourishment was a luxury she just didn’t seem to be afforded. She was withering away…
Day One found Kathey in the ER and eventually into surgery, where the Surgeon finds her small intestines riddled with scleroderma and necrosis. The scleroderma has been the root of the problem all along. All this time that she’s been having severe stomach pain -- it has been the scleroderma. With all the necrosis, the surgeon had no choice but to remove it -- infection had set in. Kathey had been running a fever. She took all of the diseased small intestine she could and left as little of it as she had to keep Kath alive. The risk is that the scleroderma could still be lurking around in there, as well as necrosis could still be residual in the fringes of what is remaining…. But no more could be taken. To take more was a death sentence. As it is, she only has a 50/50 chance of survival at this time. The first 24-48 hours were the most crucial for her….
Prayers are very appreciated!
Finally, she told my grama she was ready to go. So my grama asked her if she needed to call me from work or if she should call my son who happens to be home from work next door. My aunt Kath said call the squad (the ambulance), because she couldn’t stand up on her own. Grama knew she was even in worse trouble than 5 seconds before!
The ambulance arrived and true enough Kathey cannot stand up on her own. It took the paramedics picking her up, (she’s dehydrated down to not much over 100-pounds [our assessment is about 112]) and carried her outdoors to the stretcher where they began to take her vitals. The paramedic that took her blood pressure, was not happy at all and called it out 3 times to the one writing them down to assure he heard him. Her bp was 70-something over 40-something. They wasted no time getting her rolling down the road to ER. She was VERY dehydrated. I’m sure that by evening she would have been dead. She struggled to keep consciousness.
Dehydration is to be expected when one cannot keep anything down after several days of vomiting! Which was only a repeat of several episodes back to back week after week. She could never recover before she was repeating it all over again. Nourishment was a luxury she just didn’t seem to be afforded. She was withering away…
Day One found Kathey in the ER and eventually into surgery, where the Surgeon finds her small intestines riddled with scleroderma and necrosis. The scleroderma has been the root of the problem all along. All this time that she’s been having severe stomach pain -- it has been the scleroderma. With all the necrosis, the surgeon had no choice but to remove it -- infection had set in. Kathey had been running a fever. She took all of the diseased small intestine she could and left as little of it as she had to keep Kath alive. The risk is that the scleroderma could still be lurking around in there, as well as necrosis could still be residual in the fringes of what is remaining…. But no more could be taken. To take more was a death sentence. As it is, she only has a 50/50 chance of survival at this time. The first 24-48 hours were the most crucial for her….
Prayers are very appreciated!
KATHEY'S KORNER
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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