Then.....

Today was the funeral.....

I was ok, last night, during the visitation. That was easy, meeting people, talking to them, sharing stories of Danielle. That was a breeze. She always had a story to share...ok that's a lie, she always had SEVERAL stories to share.

Then came today. This morning was the funeral. I was bound and determined to celebrate my sisters life. I wore a white shirt with bright beautiful flowers in pink, purple, orange and yellow, with a purple (Danielle's favorite color) sweater over it. I am sure she loved it. I sat across the isle from my mom, because I knew I would sob, too, if I sat next to her.

But then.....

I looked at the alter with her smiling face staring back at me, and realized I would not ever see it again, in person.

I heard the priest sing "Yellow Submarine" by the Beatles, and realized I would not ever hear it played 37 times in a row.

I heard them say that she was being welcomed into Heaven by Uncle Jim and Aunt Rita.

I realized that she really did die. That she took her last breath in front of me. That God now has her in His arms. That I won't have to tell my kids to settle down cause Aunt Dani is sleeping.

And then I cried.

Death Becomes Her

So glad I can finally get on here! After a busy we and no time to write, then their servers were down, or something....

Anyway, Easter was good. But the days that followed were rough, very rough. She got to a point to where she could no longer turn her neck. She was looking to the left and that was it. She could not turn her head, lift it, obviously get out of bed.... After a few days we realized that she was in pain, but she just couldn't vocalize it to us. Once we got her on a regular pain medication schedule (Ibuprofen gel on wrist and Oxycodone liquid) she improved. She was still bedridden but was talking again and laughing and telling jokes. A few days later, a nothing turn for the worst. This time she was having trouble taking liquids. And for a few days we had to take her off of liquids, just thick things like applesauce.

This past week she was great. Eating and drinking pretty normally. Being demanding! Being Danielle! She was slowly having more pain, didn't like noise, and wasn't a big fan of having my kids (3 and 4) near her. She was super g. reat with her hospice nurse, very cooperative. And was waiting for a strawberry ice cream from her nurse on Monday.

Thursday morning she good. But by that evening it all changed. My mom, brother and I went out for an hour or so, while my aunt watched the kids and Dani. We got home and my aunt described what sounded like a seizure. So we quickly gave her medicine for the seizure and called hospice. And this is when she slipped into a coma. The nurse was out here for a few hours. When he arrived at 9pm on Thursday, her Osats were in the 40s and her heart rate in the 140s. He ordered oxygen. When the nurse left after few hours later, her sats were up to the 50/60s, heart rate still high in the 140s and her fever was down to 102.1 (after starting at 103).

I stayed up the night with her. I wiped thick white from her nose. Around 5 or 6am I noticed that her legs now appeared molted and her fingers and lips looked more and more blue despite having a fever. Around 9am her fever had spiked to 105.5. The Hospice nurse arrived at 930, we talked a bit and decided that it was time for "constant care"---a nurse that is at the home, nearly around the clock, generally in the last 72hours.

The constant care nurse arrived right around 10. As the two nurses talked through their change over, they said that her Osats were at 33% on 5 liters of oxygen. --This is bad. A few minutes after this, maybe around 1030 Danielle's main nurse told us that it wouldn't be long. Family came as did the Priest of the church. The Priest read her prayers of the dying (I think that is what they are called.) During this time, Danielle was still in a coma, but we were told that she could hear us.

Her breathing was so hard....her whole body was working so hard...she was fighting so hard...at 12:59pm surrounded by her parents and 3 out of 4 siblings, she went home to the Lord.

The last few days have been, well...they have been. By Wednesday morning she was choking on every drink of water and not eating. Today, Thursday, we are staying away from liquids all together, as her risk of aspirating the water into her lungs is quite high. Yesterday, she had a bite of pasta and today she had some applesauce!

Danielle has also is bedridden now. But has developed the restlessness that come in the last few days. She is now getting a dose of Lorazepam every 4 hours. This helps to keep seizures at bay and keep her calm and able to rest.

I feel like there is much more to tell. And a better way to tell what I did....but today has just been a very tiring day, in several ways. I promise to be better next time ;-)

5 to 7

Today was a bad day. A VERY BAD DAY.

This morning she made it to the table and had breakfast. Well she started breakfast and didn't finish her first helping of cereal. Not finishing her breakfast is a sign that it will be a bad day. Remember me tell you about how much she eats?

Oh crap gotta call hospice, be right back....don't go anywhere...because I will be back before you even finish reading this sentence. Ya know the power of a blog and not a phone conversation or even IM! LOL

See I am back, and you didn't even notice.

By 12:15-ish when my aunt and cousin arrived with lunch we had not heard one peep from Danielle. She slept through the kids playing and new voices, and even us eating-so really through lunch. It was probably around 1 when Mom woke her up. It took almost 3 full minutes for Dani to be able to turn herself over in her bed and be able to get up. Then it would take nearly 5 mins to "walk" (and by walk I mean not fall) to the door of her room. At that point we just took her back to her bed and brought lunch to her. She wanted to eat herself, but kept missing her mouth with the pizza. As soon as was done eating she was asleep...

Around 6pm we had to wake her up again to eat dinner. This time she was worse then at lunch. Could not feed herself at all alone. But man did she want to! Mom said (Mom was home today! and got to spend the day with Dani!) that she was determined to it herself. So Mom just guided her hand. She hardly ate...Less then my 3 year old even.

There is a really great timeline that is published in several places about the final stages of life. And it is just a guideline, but according to it, she is looking at approximately 5-7 days. Only time and God will tell.

TMI- means nothing to me

As a mom, you learn quick to get over what most people think is TMI. Poop, Puke, Pee, basically anything that starts with the letter P! As a caregiver, it is pretty much the same thing, but you have to get over it all over again. Because as much as the person is functioning like a toddler (with the speech, eating, sleeping, etc) it is NOT the same as your 3 year old, no matter what you tell yourself!
And can I just say that as a pregnant caregiver, it is a whole new lesson. As smells....well....you know!

This week has been that get over it and quick week. We started it off slowly, getting over Easter's festivities. She spent most of Monday and part of Tuesday in bed sleeping. Wednesday was a fairly good day, asking for a walk. Thursday was also good, spending some time sitting outside. But by Friday that was over, and by Saturday we realized that the "good" days are probably all behind us.

I am a mom, I good at wiping hands and faces clean. The table too. Convincing a preschooler that a bath and nail clippings, really are not the work of the devil, well---I am working on it! But this week has given me two new cleaning processes....cleaning poop off of hands, items in the bathroom and under nails. I know I am a super lucky mom that my kids never turned into the poop monkey's I have heard other kids turn into! And can I just say, that the smell of poop from a grown, dying adult is horrific....maybe it is just the baby in the growing belly, but really awful!

This week brought other challenges as well. She has seemed to lose her sense of hot and cold, esp in her mouth. She wants food, lots of food, right NOW. Problem is, sometimes those things are pipping HOT. She isn't phased by this at all, a fresh cup of coffee, gone in 2 drinks. Dinner straight out of the oven, no worries, gone in just a few bits. I am not sure what to do about this....I mean, seriously. Her speech is slurred all the time. I feel so bad, because at least half the time I just can't understand her. No matter how many times she says it. That has to be soooo hard on her-she can't fend for herself and now she can't communicate what she wants or needs. Tonight or tomorrow I will be working on flashcards of sorts, to help her communicate with us. Since she has always always had trouble with writing and reading, this is our best option. As I am sure those things are long gone now.

Her breathing seems to be much more labored now. Not a good sign for anyone, esp not for her... Her left side (where she already had weakness, a side effect of one of the 03 brain surgeries) is pretty much useless, not quite but almost dead weight. This makes it very hard for walking, and standing, and really just about anything. I pray daily for God to literally give me the strength to help her. Literal strength!

Good things happened this week too! I mean not everything in my life is bad. Hospice came out this week, and I met 2 angels. Beth her nurse and Julie a social worker. What amazing ladies. Lots of help with everything! Bringing gloves, getting a hospital bed, commode, and wheel chair in here. And a respite volunteer to come once a week to give me a break! AH-MAZING!

And my awesome and not deserving of what is going on hubby, and I got to go out to lunch just us! I finally got to try Five Guys Burgers. Yes, I know, I am so behind! Greasy, but oh so good!

week 1 --an overview

We brought Danielle back home on April 15th. So technically as I type this, it is week 2 ending. But I will get there. Remember, I told you I should have started this a few weeks ago....

Like I said, she came home on the 15th, that was a Friday night. There was a ton of here that night. Myself, my husband (well he came home from work a little later), our 2 kids, my mom, dad, step-mom, 2 little brothers and a girlfriend. We had pizza that night....that was the first "taste" of what we were in for. Because of the high dose of steroids that she takes to keep the swelling of her brain down, her appetite is that of an NFL player. She ate 5 or 6 pieces of pizza and several bread sticks!
My mom came home with news that she had gotten promoted to a higher position and a change of location at work. In theory that was great news! But not that day. Added hours and stress was not what the dr ordered. Literally! We spent that night still in shock of all that was happening. Sunday, was a "normal" day.
Monday, began a crazy and stressful week......
Danielle's wonderful case worker called Hospice for us and set up an informational meeting. That was really great, learning what this great program was going to do for us and Danielle. Then came word that my mother's family was putting together a celebration for Easter for the upcoming weekend! How awesome that was, what a great way for Danielle to see her family and for them to see her. Except it took a terrible turn. No one thought to include us in the planning for the occasion. So it was planned for a time in which both my mom and one of my brothers where at work. But more importantly, the time of day when Danielle sleeps! uh-oh.
I thought I was polite when I explained this. But apparently not, this then caused a war of words in my family. Looking back in hindsight (which we all know is 20/20), maybe people didn't understand that I am the one who cares for Danielle, about 80% of the time. Either way, things were blown WAAAAAAY out of proportion.
Then there was me getting bent out of shape because someone tried (agian, my poor family) to tell me they understood how bad Danielle was. Uh, HELLO, pregnant mom of 2 who is now, basically taking care of a 5'2, 200lbs 2.5yr old. NO, YOU HAVE NO FREAKING CLUE. Yes, hormones I know.
Days, were both bad-sleeping for 23 out of 24 hours, literally. And good--being awake all day on Saturday and enjoying the family and even an Easter egg hunt!
But before that, Hospice came to the house to admit Danielle to the program! The lady calls in the morning to set the time at 4, (dinner is set for 5-6) ok we will make it work. She calls around 230 to tell me she is now running about an hour late and won't be there till 5. Uh, ok, gotta do this ya know. Then she doesn't freaking show up till 545! this time no call!!! Then she doesn't seem to know her head from a hole in the ground--this is not going well.

livivng life

This is something I really should have started just over a week ago. The day we got told 4-6weeks to live for my 26 year old sister. Ya know, then I could have told a story about the ominous way it was said, and how the whole floor of the hospital became silent and the only thing you could hear was the ticking of the clock, but really that would be bull. None of that happened.
But here is a brief run down of how did happen and all that went one for the following days....

It was a Friday, when the doctor was finally not too busy to talk to us and tell us just what was going on. Friday, as in 3 full days since we went to the ER, with her throwing up and slurring her words, and unable to walk unassisted. During those 3 days she spent the entire time in a bed sleeping, and sleeping and then sleeping some more. When he told us that the tumor (the 2nd principle tumor) a glioblastomia, was back after just 4weeks after he removed it, we wanted to schedule another surgery right way. That would have made brain surgery number 5. Yup, you read that right FIVE!

Once, Danielle made the decision to not have surgery and we agreed. We were done with the neuro "god", or maybe he was done with us....we have no heard from him since. We left the hospital with Danielle, a few hours later. That was the day that my life changed from "living life" to "surviving death".