Monday, October 31, 2011
Sunday, October 30, 2011
"Everyday may not be good.... but there is something good in every day..."
The good in today: Spencer got moved to the step down unit....
Wednesday, October 26, 2011
What I'm really thinking: the terminally ill patient
Will I be able to stay there through shift change? (NO idea)
Monday, October 24, 2011
"Stay positive and keep fighting. Never give up. The stronger you fight, the stronger mentally you are going to be in the end." -Astra Waller (fellow CFer from clinic who is now breathing easy)
- Everyday may not be good.... but there is something good in every day... (not sure who this was said from, but I love it)
- "A hero is not a person who puts on a cape flying around and saving people. A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." (not sure who said this either - but Spencer is my HERO!)
There are more - I'll share at a later date. But I read these every day and they make me think of the good; not the bad, and at least crack a smile once no matter how rough the day is <3 =)
Friday, October 21, 2011
Wednesday, October 19, 2011
This is actually a drug that treats the CAUSE of Cystic Fibrosis - not just the symptoms like other drugs currently available. They have made such huge strides with the treatment of CF. Spencer doesn't have this mutation, to my knowledge, but they are working on a drug combination for the Delta mutation - in which he has. I have so many friends with CF and I am excited that they might get a new chance at life, a longer and healthier life because of this medication.
Monday, October 17, 2011
Sunday, October 16, 2011
Saturday, October 15, 2011
Friday, October 14, 2011
"Lay your hands upon the sick, and they shall recover. Return not till I, the Lord, shall send you. Be patient in affliction. Ask, and ye shall receive; knock, and it shall be opened unto you."
I just love this... I've heard it before and every time I read it something inside of me just... clicks... like it's exactly what I needed to hear. There are a few other verses that I have jotted down; but I'm sure I'll share at a later time. I'm glad that I'm able to read again... and that it's enjoyable to me. I'm getting so much out of it. Spencer said that he wanted to read together every night. I'm really looking forward to it. =)
I just think one of the most important things that we can do at this point is draw close to our Heavenly Father... It's the only way I know how to get by....
Monday, October 10, 2011
He continued to be confused and then he started getting agitated. He insisted that his bi-pap was broken. And then he wanted to break it... He kept yelling for help. I'm not exactly sure what he was thinking was wrong but something sure wasn't right to him. He continued to try to break the facemask of the bi-pap. I couldn't stop him. He finally put on his oxygen mask and we had to lie to tell and tell him he was doing just what he was supposed to do. Gosh he was just so confused =( It was SOOO hard to see. Especially when he didn't know that I was right there with him.
Saturday, October 8, 2011
Friday, October 7, 2011
Thursday, October 6, 2011
(I was talking to him about everything that's been going on, updating him... telling him i've been there every single day for him and I'm not going anywhere... He then wanted my computer to type this.....) "I love you nikki more than you'll ever know."
(I guess he's been trying to communicate to the docs that he needs things and he is having a hard time getting them to understand so he was saying he was frustrated...) "The drs never listen, or well i can't talk"
(Spence was telling me how much pain he's been in... He feels like the doctors aren't listening to him and understanding how uncomfortable he is) "I'm miserable. pain"
Loved being able to communicate with him today! He's the best!! <3 Love him so much! =)
Monday, October 3, 2011
I sat down tonight and wrote... This is what I came up with - 1/4 of a completed poem. I want to finish it but I just can't find the right words right now. But I was proud of it because I feel like it describes how I am really feeling through this whole ordeal. I contemplated sharing it because it's NOT completed.... and it's so broken up not to mention I might change parts of it...But I feel like it says so much to covey how I feel... I am going to come back to it at different times and finish it eventually I hope.... Just wanted to share...
I sit and stare with words unspoken,
The news I got – my heart feels broken.
“He's been admitted to ICU…
There’s not a thing that you can do.”
Fear runs through me, through my veins,
I can't feel anything but pain.
Not physical, though it's what I wish….
It's in my heart, I just feel sick.
Fear runs through me as I sit and wait,
I wish this was a big mistake.
With levels that are off the charts,
This news I got – it is no good