Sunday, August 29, 2010

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.

Wednesday, August 25, 2010

Facebook Updates on Jessica

I haven't had the time or energy to update my blog every day but I have been updating my facebook page almost every day. I decided to post the most recent posts so you all can get caught up on what is going on with Jessica. We truly are on an emotional roller coaster ride with her. We have surpassed what anyone expected time-wise but it is so hard to see her wasting away. I'm so glad that she isn't feeling hunger or she would truly be miserable. I'm so blessed with the time I've had with Jessica and thank my Heavenly Father daily. She has been such a blessing to me and my family. Below are the updates - I put the date above the facebook post so you'll know when it was posted. I truly appreciate all the comments of love and friendship. I've gotten a ton of spam comments so I have to moderate them but I get to them frequently.

From Sunday: 8-22-10 (morning):
Today is the dreaded day as it marks the 21st day since Jessica stopped eating. She can't eat. She feels left out when we eat food that she likes. She has spit out jello and soup as her stomach "says no". We've always been told that a person can only survive 3 days without water and 21 without food. She is surviving on soda.
She scared us when she had a visitor drop off some flowers and she didn't respond to me at all. After walking the visitor to the door I went back into her room and she barely shook her head "no" after I tried waking her up and asked her if she could wake up. I was rubbing her leg and shaking her a little while talking to her. She woke up at midnight and was more talkative but she didn't even remember that Renee (her aide) had been there for her shift. At least she slept through the thunderstorm.
She is getting rashes from not being up and about and sweating. We never know when she will be awake and talkative or when she will be sleeping for hours at a time. She could slip into a coma at any time - that's why we got so scared when she didn't respond.

My brother and his oldest son are coming into town this afternoon - so please pray for them to travel safely and that Jess is able to visit with them. She was wide awake when my brother called me and she even spoke to him on the phone and teased him. It did my heart a lot of good to see her so happy. I hope this visit goes well. Thanks everyone, this is such a hard road and I truly appreciate all of you for helping us through it.

From Sunday: 8-22-10 (late night):
Jessica had a good time visiting with her Uncle Brian and cousin Kevin who came in from out of town to see her. She also had quite a few other guests so it was a busy day. It was so good to hear her laughing. Please keep the rest of our family in your prayers as the boys go back to school and hubby goes back to work.... He's been off for 3 weeks and is using up all his vacation time. Thanks so much!

From Monday 8-23-10:
Jess had a rough evening yesterday. She decided to try a bite of mashed potatoes but immediately threw up afterward. She became very restless and was saying that her heart was hurting. We put the pulse-ox on and found that her O2 sats were high but her heart rate was only 39 - 40. She couldn't relax so I called the hospice nurse.
The hospice nurse had me give Jess some lorazapam sub-lingually and that calmed her down and made her feel much better. The hospice nurse (and doc) were afraid that she could be in what they call "terminal restlessness" and as her heart ra...te goes down she will become even more restless and to give the lorazapam. They thought that she very well could "go" that night. I called Karl at work and he came right home. He had gone to work since Jessica has been quite stable and energetic for several days. Karl's srg. came over to visit too. He has become very concerned since Jess got so sick 3 weeks ago. Karl was sitting with her and she rolled over and all of a sudden her heart rate went way up to 70! (Her heart rate has normally been between 70 - 80 but has been at 50 - 60 the past 3 weeks... so 40 was extremely low.) Her heart rate finally settled in at 55 - 65 and has been in that range all night and all day today. I took the pulse-ox off at about 1:30 this afternoon. She has been resting quite well since she had the lorazapam last night.
So Jessica is doing what she does best. Scaring the heck out of us and then coming back. LOL! The whole hospice team is amazed at her. We are very thankful for our hospice team, the home health aides (especially Renee - my best hug-giver!) and everyone who has been coming by to visit and bring food. I am so thankful that the Lord allowed us one more day with His daughter who he's loaned to us the past 22 years. And am thankful for such amazing sons who were still able to get up and go to school today and who are so Great to have around! My husband is the best husband I could ever ask for and I'm so thankful to him for all he does. He is off work again to be here to help watch over Jessica in case she has another restless event - which they tell us will probably happen. We are taking turns sleeping - he tried sleeping in his cot in the living room (which he has been doing for the past 3 weeks) but he kept getting woken up by different things - so when I got up I sent him to bed. I'll be taking a nap soon too. There is a thunderstorm brewing so I'm going to unplug my laptop in case of a power surge.

From Tues 8-24-10:
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. Thank you all so much for your loving comments.

Monday, August 09, 2010

Poem for Jessica

This is a poem that my sis-in-law wrote a few years ago. I hadn't read it in quite sometime and don't really know where my printed copy is... so I asked her to please post it. Enjoy this beautiful poem.

Mandy writes:

Poem for Jessica by Mandy Holmes Taylor
For those of you who don't know, I love poetry. I don't write or read it anymore as often as I should.

This particular piece came to me a few years ago in a dream and wouldn't let me rest until I had written it down. I sent it to Nancy shortly after I wrote it and she asked me to find a copy now. I thought I'd share it with everyone, too. Feel free to re-post or direct others here if you desire.

Always the Princess

My family began with my parents' first son
And continued because they couldn't have just one!
Mama hoped next for a beautiful girl
With celestial eyes and hair she could curl.

So I came, then, in answer to prayer,
Her very own princess, though bound to a chair.
Mom and I play, giggle, and talk
Of all things to come when with angels I'll walk.

"Heaven is perfect, my princess," Mom says
As she irons and smooths my favorite dress.
"There you'll never be lonely or gasping for breath.
You'll have more family to love even after your death."

"I like it here, Mama," I say with a tear.
"I'll miss you and Papa. I'll only know fear."
She says, "Hush, now, princess. You've been there before.
God loves you, as I do, and has blessings in store.

Let Him now enfold you as you fall asleep.
I pray every day your soul He will keep.
Fear not if tomorrow in His presence you wake.
It is one step in a journey we all someday take.

I and Papa will follow when God for us calls.
We'll find you and hug you in His glorious halls.
If He calls you and offers His heavenly rest,
Go, my sweet princess. He knows what is best."

"Our family--begun with your very first son--
Is forever! Forever!" Mom smiles, "Yes, the victory's won.
I love you, sweet princess, do not needlessly stay.
We will see you in heaven, in God's glory, one day."

Sunday, August 08, 2010

Sad News

Things can happen so fast sometimes that it takes awhile for my brain to catch up. That's what it's been like for the past several months. We've had one thing after another - or several things at once and suddenly I'm wondering... how did we get here?

First of all, Jessica was able to have a nice birthday. Lots of people came and she enjoyed their company. She didn't eat much but she did get to eat a little of her cake the next day. Unfortunately the very next week she got very sick, vomiting, fever and her ankles swelled up quite a bit. My husband was out of town for work and I had to call him home so we could hospitalize Jessica due to congestive heart failure. We got her settled in, gave her massive amounts of diuretics which had Jess and I spending 1/2 the time in the bathroom. lol The good thing is that we got to be in the new Children's hospital here in town. It's very nice. The echocardiogram showed that the right side of her heart was even more enlarged than we expected and that both the right atrium and the right ventricle were very enlarged with regurgitation between the two chambers - which causes more pressure - which causes more enlargement - which causes the valve to not be able to close properly -which causes regurgitation... you see the cycle. So they increased the amount of diuretics for her to be on while at home asked her to keep her feet up. A palliative care doctor came to visit us and after talking to Karl and I for awhile she said that her main concern was that Jessica was not getting ENOUGH morphine. That's the first time we had ever heard that - everyone has been so concerned about her getting too much. Although they had reason to because she has Ischemia of the bowels which slows down the motility of the bowels and pain killers such as morphine will also slow the bowels and she definitely doesn't need to have an obstruction due to stool backing up. The GI doctor examined her and took an x-ray and told us that she was clear of stool and that as long as we increase the morphine to increase the Amitiza which is a medication to help move the stool through the system. We were also encouraged to enroll Jessica into a hospice and one was suggested to us that was also a palliative care company.

So the ball got rolling and before we knew it a hospice doctor and team were talking to us and told us that she definitely qualified and he was very concerned about Jessica's pain level. We signed her on just a couple of days later.

The morphine has been hurting her stomach but her gut is extremely painful without it (due to the ischemia). It took us awhile to figure all that out. The hospice nurse mentioned that "Jessica wasn't eating enough to sustain life." I got to thinking about it and realized that she really had decreased the amount of food she was eating over the past few months. We took Jessica to the GI doctor last Thursday, July 29, and he told us that Jessica was literally starving to death and that if we didn't get her to eat protein then her GI system would not work at all. We were shocked by the information. When they weighed her she had lost 15 lbs in just over a month. She's not a very big girl so that was surprising. The CHF (congestive heart failure) was making her retain fluid all over her body which masked the fact that she was losing weight. The doctor wiped away some tears from his eyes and said how sad it was for her to have to go through that... she's such a sweet girl. Of course he told us this in private and as he left I just hugged my husband and cried a bit. I knew then that she was definitely going this time.

We got McDonald's on the way home in hopes that it would encourage her to eat - and she did - 3 whole chicken nuggets! 4 fries? She could only eat 1 1/2 nuggets that night. I went online and calculated that on a GOOD day she was only taking in about 600 - 700 calories TOTAL. So we started pushing the food, hiding protein power in her fruit smoothies - and it backfired on us. That Monday night she got very sick: vomiting, high fever (104.5), etc.... she even got mad and yelled at me, "why is everyone trying to make me eat? I can't eat". On Tuesday we were able to get a subcutaneous port for the morphine and it's on a pump. It completely bypasses the stomach in order to make her more comfortable and have continuous pain relief. They also came back a couple of days later and programed it to be able to add a little extra morphine for break-through pain by the touch of a button. It's also programed to not allow more than one "bolus" every 20 minutes. If she is needing a lot of extra bursts then they will reprogram it to give more continuous morphine. It's been such a blessing!

I told my husband that it was going to happen very fast now.... and here we are:

The last time she ate anything solid was last Sunday, Aug 1st. She has had several days of being comfortable 99% of the time. I just can't remember when she was so peaceful... she's been in so much pain for so many years. She had several days where she was able to sit up and visit with family and friends who have come to see her. It's been so nice to see her enjoy their visit and be happy - and be comfortable. What tender mercies from the Lord.

She has been sleeping more and becoming more withdrawn the last couple of days. My parents were able to arrive into town safely and have been here to visit with Jess twice. My sister, (who's son passed away almost 2 years ago from a brain tumor) flew into town and came to see us also. Jessica has a couple of visitors come by and she didn't really open her eyes much for them but did a little wave with her fingers when they left. When I was talking on the phone, I mentioned that my sister was coming into town she smiled. As soon as my sister came her eyes flew open and she adjusted herself in her bed so she could see her aunt. We haven't seen my sister in almost 3 years. It's soooooo good to have her in town for a few days.

Jessica has pretty much been nodding or shaking her head and even signing a few words instead of speaking but a few hours ago (about midnight) she perked up and started talking to me. Of course she would... it's party time at midnight. hehe! Poor kid threw up earlier in the evening (and that woke her up!)...mostly dry heaves. I called the hospice nurse and they want me to put the anti-nausea lotion on her wrist every 4 hours 24/7 if possible. That way we can keep on top of the nausea. I've also noticed that instead of fluid building up in her feet and ankles, she's got some building up in her knees. She is also quite congested at times. Most likely due to lack of activity but she is too weak to do anything except to go potty (which is a portable one that we bring into her room and it's 1-2 steps for her to take at most.

We are having to shift our thinking. All these years I've done my best to keepher alive and as healthy as possible. Now the goal is for her die as peacefully and comfortably as possible. She has been going through the dying stages for several months already - we just didn't know it due to her CHF keeping the weight on. But there's nothing that we could have done anyway. The hospice nurse explained to me that the GI doctor was wrong when he said that Jessica was starving and that we needed to get her to eat. He said that most doctors have been trained to save lives and concentrate on that so much that sometimes they forget that dying is also a natural part of life... if the body is dying it doesn't need food and it will reject it. A little while ago, after she started talking, she asked me what I thought she could eat. I said that I wasn't sure that she should eat because I didn't want her to throw up again. She said, "I didnt eat today or yesterday so I'm worried" I told her that her body doesn't need to eat right now and that I
could get her more soda, popcicle, jello.... she asked for Root Beer. She seemed relieved that I wasn't pushing her to eat and that it was ok not to. She isn't aware of time as much anymore and I was surprised that she thought it had only been two days since she had eaten anything. It's ok. We are just playing it by ear and loving her as much as possible.

Thank you all so much for your lovely emails. I have received quite a few privately and I appreciate each and every one. I pray that God continues to bless her with peace and comfort and that she is able to go on to her new life with joy in her heart knowing that so many people love her. She has her cousin who will greet her (and whom she dreams about every night - they usually go to Disneyland in her dreams)... so I know she won't be alone. There are many others who will be there for her too.

Love and prayers,

Oh, I almost forgot. Several people have asked where to send cards so here is the address:

Jessica (or Nancy) Jensen
3422 S Champlain Ave
Tucson, AZ

Thank you again for all your love and support!