The Grizzly Rollercoaster

A hint of a smile during a nap :-)

It has been a roller coaster ride (think "The Grizzly" at Kings Dominion for all you Richmond, VA folks). Kaitlyn has been struggling to keep her oxygen up in her body. We had to reset her pulse/ox to alarm at 85 instead of the normal low 90s, otherwise it would keep alarming!

An art project (K's hand print on the left and footprint on the right) for someone special

Stephanie, RN with Kids Path (hospice) said that she could hear crackling and fluid throughout both lungs, not just in her throat like before. Kaitlyn is running a fever again 102.7, as of last night, and has exhibited on and off symptoms of being closer to the end. For instance, her body was really warm but her hands and feet were really cold. Often a sign that the heart is having a difficult time circulating blood to the extremities. Her arms were also really splotchy. We don't know if it was just a one time thing or if signs like this will continue.

Gigi holding Kaitlyn's hand

We did however start a new breathing treatment that contains 2 different medications, instead of just Albuterol. It has both Albuterol and Ipratropium Bromide (say that 5 times fast!) in it and is supposed to help open up her airway more and dry out some of the fluid in her lungs. We tried it once last night and it worked well to get her oxygen concentration back up a little (low/mid 90s) and we heard less fluidy sounds in her lungs, but she seemed pretty agitated. A lot of times after a breathing treatment you can get jittery, like you've had too much caffeine. I think she may have had a little bit of a side effect from it.

Memere helping out with Cole

Overnight she did really "well" and didn't seem to be in pain and kept her oxygen levels above 85. We have also increased her pain patch to 1 and a half patches versus just one. Hopefully this will help her to continue to rest easy and ease and suffering she may be enduring but unable to communicate to us.

So thankful for Gigi and Memere!

So the following is to give you an idea of what yesterday was like "on paper". We have a notebook that we write everything down in. With more than one person giving her medications, we can't be too careful.

Looks like she's ready to go work out!

This is what our notebook reads for yesterday.

Kaitlyn Kay    W 2  BM 1
(W= Wet diaper and BM= bowel movement)
2-1-12
2:45am- Morphine 1ml, O2 Low 88
4:45am- Antibiotic and Guiafenesin (same thing as Mucinex)
4:50am- Albuterol BT (stands for breathing treatment)
6:00am- Morphine 1ml
7:30am- Klonopin 2 tabs and Keppra 3ml
7:35am- Elecare (this is a special broken down formula that she gets through her G-tube) at 35ml/hr (30 ml equals an ounce so this isn't much per hour)
9:30am- Kelly from Bayada Nursing came to do a re-assessment of Kaitlyn since her condition has changed so much in the past few weeks.
10:11am- Morphine 1ml
10:18am- Neurontin 4ml
10:31am- Atrophine drops (2 under tongue)
11:41am- Klonopin 1 1/2 tabs
11:45am- Lactulose
12:00pm- Albuterol BT
1:30pm- Stephanie, RN with Kids Path (Hospice) to check on Kaitlyn
1:55pm- Morphine 1ml
4:35pm- Belly measurement 26 1/2 inches at G-tube line
4:50pm- Morphine 1ml
4:55pm- New duo-med BT (O2 went up to 98!)
5:13pm- laxative suppository
5:35pm- added and additional 1/2 Fentanyl patch to Kaitlyn's shoulder, she already has one so now she has 1 1/2.
6:28pm- Neurontin 4ml
Note- Body warm, hands and feet cold
7:01pm- Oxygen 95/ Heart rate 129
8:01pm- Klonopin 1 1/2 tabs and Keppra 4ml
8:09pm- Temp. 102.7
8:25pm- Neurontin 8ml
8:30pm- Morphine 1ml
11:30pm- Morphine 1ml
Decided not to continue feeding overnight because we noticed some slight swelling in her legs and feet.

Kaitlyn isn't bothered by any of the above. She tolerates everything really well. The only thing is the Neurontin. We can't give her a large dose all at once cause it upsets her stomach, so we spread it out over the course of the day. So if you keep checking the blog for updates, this is what we are doing. :-) And we are doing it happily.

I want to say a special thank you to Shannon Wright Photography for taking such great photos at the Prayer Service that was held in my hometown in VA on Monday. We will treasure each picture forever.

Here is a link to some of the photos: http://www.flickr.com/photos/sqwright/sets/72157629134545743/

Kaitlyn's Light Shines!

I wish I could have been in Richmond, VA at the prayer service to hug each of you and show you just how much I appreciate what you have done for Kaitlyn and for us. It takes a special person to actually act on an idea, especially one like a Prayer Service with slide shows and songs and prayers, etc! WOW!

Prayer Service mentioned in the news earlier in the day.

Photos from the Prayer Service

Kristin (my friend from HS and the one who made the event

Showing the "Our Story" video about how we learned of her diagnosis

 If you haven't seen "Our Story" here it is...

I have always known what great people there have been in my life but when you go over 14 years without really staying in touch except through Facebook, it's pretty incredible what has happened and what others are willing to do.

This is a slide show that Christian Flemming put together with a song by Kari Jobe (that Kristin sang at the service) and with me talking during the News 14 Carolina interview. 

I am amazed at Kaitlyn and how she has touched so many people's lives. I have started to print out messages that I receive about how she has impacted their lives.

News clip on NBC 12 in Richmond, VA!

A huge THANK YOU to everyone involved in the prayer service, especially Kristin Gainous-Anderson who came up with the idea but to Christian Fleming for the videos and Cheryl Read for getting the word out to the media. Thank you to each of you who have put your time and effort into making this happen. You will never know what a big difference you have made in our lives. Thank you to everyone who came to the service and prayed for Kaitlyn, it means the world to us.

So sweet. I didn't know you guys did this. So awesome!

Thank you!

I can't wait to see more photos and video from the service. I know it was fantastic by all the responses and comments on Facebook and the blog about it.

I just imagine Kaitlyn singing this to herself. :-)

"This little light of  mine... I'm gonna let it shine... this little light of mine... I'm gonna let it shine... let it shine, let it shine, let it shine!"

Prayer Service for Kaitlyn is Tonight!

Bow-utiful

So much is happening that it's hard to keep up! Tonight there is a Prayer Service with lots of music and photos at Mount Vernon Baptist Church in Glen Allen, VA (my hometown). Everyone is welcome and it starts at 7pm. If you can't make it or live elsewhere, please consider saying a prayer of peace and comfort for Kaitlyn during this difficult time for her.

Today with her sweet pea

The pain that she was experiencing has seemed to get a bit better. She has the pain patch on her shoulder and we are giving her morphine every 3 hours and the past two nights she has slept all the way through the night! We are still getting up every 3 hours to give her the medicine but it is well worth it for her not to be in pain and for her to get good rest.

Today though she is having trouble with her breathing. It is becoming more difficult for her to maintain a good oxygen saturation (mid-upper 90s). She has been in the 80s and low 90s most of the day. She is over the maximum limit for how much oxygen she should be on at a continuous rate so we can't go any higher for extended periods of time. I tried an albuterol breathing treatment but we aren't sure if it helped much.

Right now she is propped up on some pillows. We are hoping that this will take some pressure off of her lungs and let her breathe a little easier.

Propped up on pillows

We wish we could be at the Prayer Service tonight but we can't leave Kaitlyn's side. She needs us. Plus we live in Indian Trail, NC. The last time Kaitlyn was in a car seat was months ago! She can't tolerate being in an upright position since she will choke on her saliva so we are home bound for now.

Cole has discovered a love for kickball with Daddy!

I just want to thank everyone in advance for everything they have done to make the Prayer Service for Kaitlyn a reality. The goodness in others, near and far, is incredible. We can never express in words how thankful we are for all of you.

Kick!