DAY 12 - SUNDAY, 24 JANUARY 2010

Well, my fighter continues to hang in there. She looks great! Her tan from last Spring is still present - making me still look ever white next to her! :-) She comes from good stock - they are all fighters, what more can I say...?

Yesterday morning she woke up and tried to reply "Morning" to my Mom when she told her "Good Morning". This morning she woke again and my Grama was able to talk to her on the phone and my Mom said that Kath was responding with facial emotions and when my Grama told Kath that she was her best friend Kath almost cried... [Makes me cry...] Also, Kath tried to say the words "I Love You" but they just didn't come out...

Today while we were at the hospital, her nurse had to move her hand to check the site of one of her drains and in doing so caused much pain for Kath. Due to the pain, Kath actually woke. Grama was blessed with being able to look Kath in the eyes once more and talk to her. Though Kath was unable to say anything back, we know she was listening intently to Grama.

She hears everything we say. We've caught her smiling, raising her eyebrows, and making other facial gestures. Yes, she knows we are with her and talking to her. And we do talk to her.

Grama read cards to her today that she's received from Nadine, Kath's baby sister and Jan, Kath's good friend. You could tell that Kath was emotionally touched by both cards. How I wish I knew what she was thinking or was wanting to say. It's like she's trapped in her body that is just so tired and worn out from fighting pain to be able to wake to chat with us. Of course, the meds don't help. But without the meds, she just couldn't bear the pain as well as she's done.

I have failed to say, I think in earlier posts, how wonderful her family has been to her. Of course, you can only imagine what my Grama is going through... It's so heartbreaking. Not only are they mother and daughter, they are also best of friends. This has been very painful for them both.

My mom has not left the hospital since learning of Kath's eminent departure on Wednesday. Since Kath moved into a private room in the Palliative Care Unit, she's slept in her room [that was Thursday], keeping a big sister watchful eye on her. I've asked my Mom to go home and get some good rest, and thought she was going to bite my head off! :-) [Guess she wasn't ready to leave her "seester", huh?]

Kath's only & baby brother, Bud, drove straight through from Toledo the day after her surgery to be here with her, arriving here on the 15th. He was at the hospital every day, almost every hour, only leaving to take Grama home so she could rest her aching back. Business took him away yesterday. He was sad to leave, but had no choice. [There isn't anything anyone can do.]

Kath's baby sister, Nadine, calls every day from Toledo and sends prayers Kath's way and my Grama's way as well. Offering support to my Grama as she can. She too, wanted to fly down as well, but as I've said, there isn't anything anyone can do. We just watch Kath breathe in and out. We talk to her hoping she's hearing us... We tell Grama when she's walking almost in half, that she's pushing herself just too hard, please, go home... Nadine and Bud are going to be such a help to my Grama when she needs to return back to Toledo, I pray they will be there for her then. And I know they will be.

We're a small family - but a very close family. I don't have a large family, but the family I have is so important to me...

I continue to pray for my Aunt Kath. I pray that she's not in pain. I pray that she dreams of happiness, of joy as she sleeps. I pray that the end will be as she wishes - while she sleeps. I pray the Lord will be merciful and come to her while she sleeps. I pray the end will come quickly for her. I pray her suffering will end soon...

DAY 10 - FRIDAY - 22 JANUARY 2010

Kath continues to sleep and rest. I'm so thankful we were able to visit with her while and when we could on Wednesday. She's been able to see and talk to her mom, oldest sister, brother, only niece, middle nephew, grand-niece, and nephew-in-law. She's received many well wishes from her youngest sister, sister-in-law, both brother-in-laws, both the oldest and youngest nephews, grand-nephew, aunts, cousins, many other family members [my brain is so tired, forgive me,  please] neighbors, and so many friends. She is so loved.

She continues to hold on and fight. To me she's Kath Jo a.k.a. "Muhamad Ali". Don't get in the ring with her - you won't win! :-) She's got such strength. Of course fighting this disease all these years, proves just how strong she is. I don't think just anyone could have dealt with the pain like she has all this time.

The hardest part of all this is watching and knowing my aunt Kath is in pain. I can't stand knowing she's hurting. If only I could take the pain away from her...  Also, I hate seeing my Grama's heart breaking. I've said it before - Mothers should not have to go through this! This is just so hard on her. Not only is she losing her daughter, but she's losing her very best friend as well. My aunt Kath was there for my Grama when she was dealing with my Grampa's illness and death. She was there for her when she was learning how to become a widow...  She's always been there for my Grama. My Grama is going to miss her so much.

Watching my mom's heart break is hard as well. They may have fought like cats and dogs as kids, but they've become good friends as adults - especially over the past years. As Kath would say, they are "seesters"!! :-) It hurts my mom to see her sister like this. If this was happening in 20-30 years from now, it would be easier, maybe, but not at this young age!

DAY 9 - THURSDAY - 21 JANUARY 2010

They moved my Aunt Kath to the 7th floor today. The 7th floor is the Palliative Care Unit. It's where all the cancer patients are. She's been sent here for "end of life" care. Grief, this isn't right! She's too darn young to be going through this! She's too good of a person to be going through this! This just isn't right! It isn't fair! It just makes me so dang mad!!!

I am a Believer, but I would be telling a lie if I said this doesn't make me mad at Him. I know He's in control and He has a reason for all He does, but darn - is this necessary? Really? She's got a heart of gold. She's a faithful person. She's a good person. She'd never do anything to hurt another. She loves her family and they've always come first in her life - even now - they still continue to come first with her...

I just don't understand...

She's no longer communicating with us. Her fever seems to be really high, her body is so hot. The nurses are so compassionate on this floor. We were worried that they would not have the time to give her the attention she would need for the pain medications she requires [she gets one shot every 15 minutes, one every hour and another every 4 hours], but they have been wonderful.

Atleast we're not being run out of her room like we were in ICU, and can stay in here around the clock and do not have to pick up a phone and be let in the door like we were in ICU. We are able to come and go much easier and be with her so much better. I think this is going to be easier for Grama to sit with her. She's had to do so much standing and walking while Kath has been in ICU...

DAY 4 -- SATURDAY, 16 JANUARY 2010

Kathey rested all night once her drip was increased to more than 3 times the original amount. It still bothers me to think how miserable and how bad the pain must have been when she woke up from the anesthesia… I love her so much… She continues to rest well today.

Her surgeon looked in on her early this morning while admitting another patient into ICU at my request. I was also blessed with being able to see her again and talk to her later this morning. She said she’s pleased with the increase of Kathey’s urine output lately. She mentioned that though Kathey is past the original 48-hours 1st discussed that she’s still not out of the woods. I don’t think it takes an MD to give that diagnosis. She also said that after looking at the notes from the respiratory therapists she was going to let her partner who is the ICU doctor in charge make the assessment and decision of when to take Kath off the ventilator. We’re hoping that it will be today so that perhaps Kath will be able to ask for meds herself when we’re not around to speak up for her.

I think it will be a long time before I ever get over my aunt Kath looking at me with such pleading and tears in her eyes to take her home…. Oh, how my heart just broke….

The ICU doctor assessed Kath -- he’s not going to give the order to remove the ventilator… His reasoning is understandable. He said it will be a long time before he considers it…. Ugh! Boy this really bites for my aunt! She’s just on such high does of meds….

Well, tomorrow is another day, I pray for progress in the right direction!

DAY 3 -- FRIDAY, 15 JANUARY 2010

It’s closing in on the 48 hours and she’s coming out of the anesthesia. She’s waking up and feeling the pain. I don’t like that she’s so alert and aware of her pain. She’s asking to go home. I told her I’d take her home when she got better and tears came out of her eyes. Someone put me out of my misery. My heart is shattered and the pain is unbearable. I hate seeing my sweet aunt is so much dang pain!!! They’ve tied her hands to the bed! I’m claustrophobic and feel an anxiety attack building rapidly so I ask her nurse why she’s tied. I’m told that she took her NG tube out twice yesterday… But she allows me to untie her hands as long as I stay in the room with her. It’s a deal! So while her hands are untied I gently rub them and try to bend her fingers ever so gently trying to work the stiffness out of them. Her hands and fingers are so swollen. They are about 3-4 sizes larger than normal due to all the hydration she’s being pumped with. That and the lack of movement, I’m assuming. She’s a beautiful sight to see lying there breathing in and out!

Her pulse rate is down a bit, BP is up a bit and her CVP is up as well. Urine output is still too low, considering she received 14 bags of fluid yesterday. That must be why she’s so swollen. She also received 2 units of blood today. It was either because of yesterdays fluids that her blood was really thinned out, and Kath just needed a little extra. Or from the surgery, because there was a little blood in the stool and they didn’t know if Kathey had some internal bleeding… After a 2nd blood sample, [Thank you, God] we found there was no internal bleeding!

I’m staying the night with her -- as I cannot bear to leave her in case the pain meds wear down again and she becomes too awake and more aware of her pain.

Tonight I told her why she was in ICU… and in so much pain… I hope I didn’t make a mistake… She was looking at me with so many questions in her eyes. I’ve always been honest and open with my aunt -- I couldn’t lie -- she’d know if I was. Besides she deserved to know how well she’s been fighting a great fight!

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!

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