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/