FB Updates on Jessica Aug 24 - 28

FB Updated from Saturday, August 28,2010:
My poor Baby Girl - rashes on her arm (and bum but not going to photograph those!) and her morphing port didn't get placed right yesterday (by the RN) and it pooled just under the skin which we found today. Jess had a rough night - wonder why? Could it be that she wasn't getting her morphing into her blood? I changed the port myself and it's doing much better and somehow she is magically doing better too. *doh*

Jessica showing me her rash on her arm and where the sub-Q port leaked into the tissue and didn't get into her blood stream.


Jess giving me a surprised face. She is such a crack-up!


Another cute face. You would never know she was so sick!


She is still being a goof-ball for the photos.


Here's her rash. Poor kid... her arm keeps peeling and it's working it's way down the arm (towards the hand). It seems as though she has some fluid build-up just below the elbow from CHF. Her upper arm is as skinny as her forearm. :(


Can you guess where the morphine pooled in her arm? See that big white area under her arm? That's where the RN put the sub-Q port and it leaked into the tissue and didn't get into her blood stream. No wonder she had a rough night.


Here's another view with her pretty face partially in the photo.


Here is the back of her arm. I was able to get the subcutaneous port just below the one she had for a week (before the RN Changed it yesterday).


Here is her morphine and pump. It fits into this nifty bag which we hang on the side of her bed. It's also a "fanny" pack. All my British friends are probably giggling right now at my use of the word fanny. lol

Miss Jess was dizzy quite a bit after rolling from one side to another so we had the on-call hospice nurse come to check her out. Her vitals are surprisingly good (for her). Jess has some sounds in her right lung. It's a grinding noise. I got to hear it. Not really fluid building up but also not pneumonia. The RN called is "rhonchy" but it's definitely in her lung, not the bronchials... but not the cause of her dizziness. She is most likely getting dehydrated. Her skin is very dry especially her hands and feet. So I "pamper" her by rubbing lotion on them. Her arm is also flaky and dry where her rash is so I'm putting lotion on that too.

TMI warning: (LOL) Jess has been too weak to get out of bed even just to use her portable potty so I'm doing the diaper thing again. She isn't shy about it either, which I think is hilarious. A gal that Karl works with came to meet Jess and apparently Jessica was telling her that she prefers diapers over pull-ups. hehe Anyway, I was telling Karl last night that I'm enjoying doing whatever I can for Jess, even if it is changing her diaper, because it's something that I CAN do for her. I know that someday soon I won't be able to do anything for her and so I'm cherishing everything. And Jess thanks me too. She says that she appreciates both her daddy and mommy and has the best family ever.

In fact, just a few days ago she said, "Ahhhh... this is the life!" I asked her what she meant and she said, "I have the best life because I have a family who loves me and I love them."

FB Update Thursday August 26, 2010:
Jessica has been quite talkative today and was even teasing her daddy. I put lotion on her face and gave her a manicure and a pedicure. She told me that I was pampering her and she really enjoyed it. It makes me feel good to be able to make her feel good. I'm going to treasure these moments forever.

She was saying that her cousin, Marcus Russell (who passed away) is probably watching over her and wishing that his Aunt Nancy would do that for him too. (the pampering). I told her that he is probably thinking that he will get her to do it when she gets to heaven. She said that she would do it for him if he would do it for her. Then she started giggling and saying that she was going to paint this toenails and fingernails too and how all the angels will laugh.

It was so cute how she came up with the word "pamper" out of the blue. Her feet were so dry but her face isn't as dry as it used to be. All those meds were making her face very dry and I used to put lotion on it every day and that didn't seem to make a difference. Now that she isn't taking her meds it's not as bad... but she still enjoyed the attention... except for around her mouth area. What a drama queen - gagging and such when I accidentally got a tiny bit of lotion on her lip. LOL What a nut. But she knows she's loved. A lot.

She was asking me if uncle JR "cried a river when his oldest son died" meaning Marcus of course. I told her that I didn't know but I am sure he was relieved that his son was no longer in pain. I asked her if she is worried about her parents when she goes to heaven and she said yes. I told her that when Heavenly Father calls her home that she needs to go. I said that "Daddy and I will be ok because we know that you'll always be with us." Then we got interrupted but I think I need to keep reminding her so she doesn't needlessly hang on and on and on...

FB Update Tuesday August 24, 2010:
Jessica has been experiencing more pain so we finally got a higher dose authorized this evening. The pharmacist called me and walked me through the electronic pump and I reset it for more morphine to be given continuously and she can also have an extra push (bolus) every 10 minutes instead of 20min. She is resting more comfortably now.

Karl is suffering from exhaustion. I'm worried that he is going to get sick so I sent him to bed as soon as I got up from my nap (and after we had family prayer). I hope he gets some sleep tonight. I'm tired but not nearly as tired as he... is. My fibro is really acting up though since it's been storming all afternoon/evening. :( But at least my Baby Girl is more comfortable so we'll all sleep better tonight.

Please continue to pray for my sons, especially my youngest. All this has really been hard on him. Justen & Ravyn (my oldest son & wife) seem to be doing ok, so that is good. Please pray that Justen can get a better job and that Ravyn will continue to get clients with her new job.

I asked the pharmacist where my RN degree is and he laughed and said that I'm almost there. When I told him that Jess has been through 5 heart surgeries, strokes & countless procedures. I then told him that I've had to draw pictures of what has been done surgically and what her CHD's are and he said that I most likely already deserved one. We both laughed. He was very nice. I'm very happy with our hospice team and the infusion company who takes care of the morphine pump. It's great to have this support in place.