Wednesday, October 06, 2010

Jessica Marie Jensen earned her wings

Jessica Marie Jensen passed away at 3:30 am on Oct 4th with her loving parents at her side. She lived a life full of medical procedures, heart surgeries, strokes, and pain... but she gave love, peace, hope, encouragement and faith. We invite you to celebrate her remarkable life with us.

The viewing and funeral services will be held at the LDS East Stake Center: 6901 E Kenyon, Tucson AZ 85710 on Saturday October 9th

The viewing will be from 8:00am to 9:45am in the Relief Society Room. The funeral will start at 10:00am.

Following the services those who would like to, are welcome to go to East Lawn Palms Mortuary - 5801 E Grand Rd, 85712 We will have a balloon release there as well as a few words and prayer.

If possible, please do not wear black. Jessica has always been so happy - even when in pain. She has always love beautiful colors (her favorites being pink and yellow). Please wear Sunday dress and cheerful colors as that is how she lived her life.

I was asked where to send cards. Please send them to
Jensen Family
3422 S Champlain Ave
Tucson, AZ 85730

We are also in the process of getting an online obituary written which should be ready by Wednesday evening at

Thank you for your loving support through the years. Our love to each of you,
Nancy Jensen and family

Saturday, September 18, 2010

Facebook Updates on Jessica from September 14 - 17

Wednesday, September 15 (5:00 AM)
Nancy Taylor Jensen doesn't know what to post. Jess is pale, frail and thin. Her heart beat will be extremely irregular going from tachycardia to bradycardia then will even out and be normal for awhile. She is always thirsty but throws up if we give her very much to drink. We're still giving her the anti-nausea suppositories and "anti...-lotion" (it's anti-nausea lotion but she calls it the anti-lotion. lol).
Her skin is getting almost transparent in some places, especially her wrists where we are supposed to apply the anti-nausea lotion. We give her ice chips and only sips of soda every 45 minutes or so otherwise she is throwing it all up. We... have to be careful not to give her too much ice chips too.
We are giving her more lorazapam to help her be more calm - even if it means making her sleep more (per hospice's advice). It's no fun being thirsty and not being able to drink anything. Poor kid was even hungry awhile ago and wanted to eat something. I can't feed her when I know it's going to hurt her so much by making her throw up. I just want this to be over for her. She asks for her DSI but opens it and is too weak to hold it up... then she falls asleep... that was even before we were giving her the lorazapam.
A dear friend of ours came over a couple of days ago and brought Jessica some beads and a coloring book - she knew full well that Jess would probably never use them but she wanted to give Jessica a gift anyway. I've given Jessica a couple of coloring books and colored pencils lately knowing that she won't use them. I've had a habit over the years of buying crafty things on sale (or when I can find them) and putting them away for when Jessica is feeling "down" or going through a procedure or going to the hospital. I have some nice things still put away .... good thing I have nieces that live nearby that have birthdays, right? ;)
We are still hanging in there. I mean, what else do ya do? Still giving and getting a bunch of hugs and kisses every day. When Jessica told us her good-byes on Saturday thinking she wouldn't be here on Sunday, she said something about thinking that she was going to make it to the 20th (my birthday). I told her (on Saturday) that she didn't need to hold on and wait until my birthday - that we had celebrated my birthday early so that she didn't need to hang on and get sicker and sicker. Well, the thought came to me yesterday that she may still be thinking that she could still hang on until the 20th. I don't want her to die on my birthday if she can help it. So last night I told her again that we had celebrated my birthday and that she doesn't need to try to hang on until the 20th. And then I told her that it would be sad for me if she died on my birthday. Then she asked what day Aunt Karen's birthday is. (my sister - the mom of Marcus) It's on the 19th. I told her that neither of us would want her to TRY to die on our birthdays... but if that's the day that the Lord wants her to go to heaven then that's ok. Then I started talking about how I can just imagine the joy on her face when she enters God's light of love and sees everyone who is there waiting for her. I actually saw a smile on her face. Then we went down a list of everyone that she knows either in person or online who is there waiting for her. Of course Marcus was at the top of the list. My cousin Martin, Zoe, Sydney, Julee, Bethany, Jason, Tommy, Paige... and the list continued. (sorry if I forgot someone here). We also talked about her great-grandparents on both sides of her family. And this is just the beginning of who is there waiting to love her.
Jessica keeps ringing the bell we gave her. (curse that bell! lol) She feels hungry and can hear her brothers getting up and getting ready for school - which includes pouring their cereal. She hasn't felt hungry in weeks except occasionally. I'm trying to figure out what to do for her. I'm going to go and sit in her room and feed her ice chips... and hope and pray she doesn't throw that up.
Please keep the prayers coming. We can feel them. We just need help getting over these rough spots. Thank you all so much!
Wednesday, September 15 (night)
Jess had a relatively uneventful day. Still saying that she is hungry and thirsty (mainly thirsty) so we give her a little soda and ice chips. She's so funny - she insisted that she have her lap-table, notebook and pencil. She kept falling asleep while holding her pencil in place on the notebook paper. All she was able to do was make the dots where she put place the pencil and then fall asleep. Oh, no, she's not stubborn, is she? ;-) Poor girl. I sure wish she could do some of the things she enjoys doing. But at least she is resting....... and that sounds so good to me right about now! I'm headed to bed at 2:30am - - - soooo much better than 8:30 yesterday morning!
The hospice nurse came by and Jessica's O2 was around 80%, heart rate was 96 - 105 but her left lung has even more fluid in it than on Tues (the day before). I just checked her pulse-ox and the o2 is 75% and heart rate was 88-97. Still not bad for her at all. But I did hear trigenemy - where every third heartbeat is a PVC but that didn't last. She is going in and out of it all the time. Amazingly enough she hasn't complained about the arrhythmia like she did ... 3 years ago... no, 4 years ago when she was hospitalized for it. At least it's not bugging her.
She gave me hugs and kisses for all of you! :)
Thursday, September 16
Jessica is quite miserable today. She has a low grade temp and is experiencing a bit more pain. She has been sleeping more so she is taking in less fluids. I pray she is relieved of her misery soon. Thank you all for your prayers, messages and love.
Thursday, September 16 (late night)
Jessica's fever went down after I gave her Tylenol and didn't go back up. She's had a mostly restful day waking for soda, ice chips and meds. (The only ones we're giving orally are for anxiety and congestion and are given sublingually). Jess has said several times that she doesn't feel well. Of course I push the morphine bolus button and stick around to see if she will throw up. I think I'm doing the right thing by making her wait 30 minutes between soda breaks. She can have a little water and ice chips in the meantime if she... feels thirsty. She hasn't thrown up in 3 days now so that's a huge victory on our part! Her heart rate and O2 sats were "normal" for her (I have to qualify "normal since it is relative. lol But she's stable tonight.

She might be getting some skin breakdown so I'm going to call the hospice nurse and see about getting egg crate foam to help prevent it.

Oh, and for those of you who were wondering, I fired the infusion nurse. I didn't get her fired from her job, I just made sure that she doesn't come out here again. I hated to do it but the hospice nurse said that it needed to be done so SHE called the infusion company. yay! I didn't have to be the bad guy 'cuz I hate that - but on the other hand, it's my job to make sure that my daughter is as comfortable as possible and she sure doesn't need to go though getting her port change twice every time the nurse does it. It's not just the needle poke either, it's taking the tape off the old site that is very irritating. Poor kiddo. But, as always, she's a champion! The infusion nurse won't be out until Mon or Tues. I requested Tues so hopefully that'll be when they come.

Jessica about knocked me over when the Disney channel was advertising a new show that is going to air in a week and Jess said, "I'll probably be dead by then". *gasp!* I didn't even notice what was on tv since I was changing her at the time (and most likely administering the anti-nausea suppository - and yes, that's how she got the tylenol - she's such a trooper!). I told her that she will be able to watch anything she wants any time she wants in heaven. She then asked me if she would be able to watch scary movies. huh? I never thought she would even want to watch scary movies but I keep telling her that there's no fear in heaven - that there's nothing to be afraid of so I guess she got to thinking that she won't be too scared to watch scary movies. LOL The aide who was here said, (before I could) that she didn't think there would even be scary movies in heaven. I agreed. But I reiterated that there will be a lot of fun things to do in heaven. Later in the evening that same ad came on the Disney channel and Jessica, again, said, "I'll probably be dead by then." What do I say? So I just asked her if that was the commercial that was on earlier when she had said that and she said yes. I asked her if she was interested in watching that new show anyway and she said, "not really." I wonder what the big deal was and her feeling the need to tell me that she won't be around to see it? And she said it so bluntly - but that's Miss Jess. Blunt. When she was little she would say, "Something smells stinks" if I happened to have bad breath and she smelled it. haha! It was last Saturday that she told us all good bye and told both Brandon and Austin "I might die tonight". She seemed disappointed that she was still around Sunday when she woke up.

My sister's birthday is on Sunday and my birthday is on Monday. I've told Jess several times not to wait for my birthday to go to heaven and that I would be sad if she died on my birthday or Aunt Karen's birthday - unless that's when the Lord wants her to go. I'm going to try not to worry about it. In my book I already celebrated my birthday. I'm also trying to think of Jessica's impending death as a birth of sorts into the Spirit world - one more step towards her eternal progression. I don't kid myself - I know I will miss her - desperately at times - but love her enough to want what is best for her and living like this isn't living. She has also been in so much pain for so long... I know in my heart that she will be so much happier in heaven and I tell her that often.

I'm going to try to get some sleep since she has dozed off. She gave me hugs and kisses for all of you so *muah!*
Friday September 17
Nancy Taylor Jensen was up with Jess most of the night. I went to bed good and tired and instead of going to sleep started to cry. Danggit. I did finally go to sleep and slept like a rock. I'm still very tired and emotional. I love my "baby girl" and am going to miss so much.
Jessica is sleeping and waking only occasionally. Her pulse-ox is normal (for her) - O2 is 76 and heart rate is 80ish. The thing that Karl and I have noticed is that we've been able to see her pulse in her neck throbbing no matter what her heart rate is. Now it's barely noticeable as if her heart isn't beating as strong. The hospice nurse said that it's possible that her heart is getting tired of beating so hard for the past week (while it's been in tachycardia). I agreed and said that her heart has had to work hard her whole life due to the defects. So it could be soon. very soon. I know we've said it before and it's almost as if we expect her to pull out of it because she always does... but I know that even if she hangs on for several more days it will be difficult ones unless she is able to just sleep through it.
We've had such wonderful people from church bringing in food every 3rd day and people from Karl's work calling or coming by. Some people understand better than others. We try to be patient with those who do not understand. We've always been in a unique situation with Jess and her CHDs, strokes, having to learn to sit up, walk and talk twice. The fear of sending her off into heart surgery 5 times not knowing whether she would make it out ok or paralyzed and blind or even alive. Having to keep her home during the cold/flu season or she would be sick and fighting for her life whether in the hospital or at home. Having to keep her in a stroller until she was too big for it in order for her to be capable of maneuvering a motorized wheelchair because she couldn't walk and breathe at the same time. (She has no direct connection between her heart and lungs. The pulmonary arteries only go from lung to lung and only branch off to 1/3 of each lung. The lungs get blood through teeny tiny blood vessels called collaterals which all clamp down when her heart rate goes up. So when she walks all the blood vessels, including the pulmonary artery, clamp down and prevent blood flow to the lungs when they are supposed to open up and allow more blood flow to the lungs in order to provide the body with much needed oxygen while exercising.) One thing that Karl has done and loves to do, is when we've taken Jess to a store - say Walmart - and people are staring at Jess as she steps out of her wheelchair to reach for something.. Karl will exclaim very loudly, "WOW! It's a MIRACLE! She can stand!" LOL People will look away embarrassed. Jessica says, "Oh Daddy!" I love it. Kinda serves people right for staring. lol
So we are used to being unique. different. odd. weird. and fun-loving. This is not fun though. I already miss my "baby girl". She hasn't been able to just be her fun-loving-self in a very long time. She has truly tried and I admire her determination to be happy even when in extreme pain... and even while dying. Recently when Karl and I were telling her that she needs to go to the light when it comes and I was wiping away my tears and told her that I just wanted her to be happy, she said, "But I AM happy! I have a family who loves me!" WOW. She's my super-hero indeed. But now it's time for her to be able to truly be happy - to be free from the pain and many other medical problems that have held her back from doing so many fun things. She has been happy - and has made many people happy. But she has no idea how truly happy she will be when she is "born" into heaven and is whole.
Today is one of my emotional days but that's ok. Like Jessica says, "sometimes the tears just have to come out. Love to all.

Tuesday, September 14, 2010

Update on Jess Sep 13 & 14

Yesterday's post:

Jess is sitting propped up in her bed, dozing off and waking to have ice chips and sips of soda. She visits with us for a few minutes and dozes off again. I am still sneaking in all the kisses I can - and she will lift her arms and hug me. She's so amazing.

Jessica's heart rate has come down and is in the normal range again. Although that seems like a good thing, the hospice nurse said that she thinks that Jessica's heart rate will continue to slow all the way down to 0 - probably within the n...ext day or so. She could slip into a coma and that would actually be the most peaceful way for her to go. But then again, we are talking about Jessica and the thing she does the best is surprise and amaze us! ;-) I mean, it's been 43 days since she's had anything sold it eat. We never thought she could go that long! Jesus fasted for 40 days - who knew that Jess would take that as a challenge? lol Of course Jess cheated and has had soda. hehe... it's a sense of humor that has also helped us through all the years and all the challenges.

We cherish each moment, each hug, each kiss and each word. It's so amazing to have an angel right here in my home and in my heart. We are ready and so is she... but on the other hand she is comfortable and resting right now so we're just going to take it one moment at a time and one day at a time... just like we have been.

Thank you all for your love and support.

Today's post:
She is throwing up again and has a fever of 101. Her heart is in and out of tachycardia. She is still trying it be very pleasant and polite. I think I would be pretty grouchy by now. Doing two suppositories at a time, one for fever, one for nausea.

She's my hero.

Monday, September 13, 2010

Facebook Updates on Jessica from September 9 - 13


Nancy Taylor Jensen is having a really rough day. Jess keeps vomiting and even fell. She called for Daddy and then got out of bed and fell. He heard the crash and went running only to see her trying to pick herself up off the floor and everything on her bedside table had been knocked off. Then came the dry heaves.

Karl woke me up every time she threw up so I could give her a suppository. He is giving her the anti-nausea lotion every 4 hours as well and nothing is working. I called the hospice nurse and she came out and gave Jess a shot of promethazine. The hospice doctor said that it usually stops the nausea long enough for the other meds to be able to take effect and be absorbed better. She brought several doses in case Jess needs more injections over the weekend. The shot also makes her sleepy so she is resting. I'm going to take a nap - I'm so exhausted. Fortunately we have an aide coming this evening. Thank you all for your good thoughts and prayers.

ps: Jessica had been throwing round the clock every 3 - 4 hours even with us administering 2 anti-nausea medications.

(later that night)

Jess has been entertaining us all night. She is dreaming a lot and talking in her sleep, raising her arms up as if she were drawing or cooking. lol She threw up again at about 3:30am. She's also having a lot of muscle spasms and jerking. Could be the meds. She isn't resting very well with all the spasms and wild dreams.


Jess has had a very difficult 1 1/2 days. She has been confused, dreaming crazy things, crying out for help and her speech has been slurred. Sometimes it's been cute to see her reaching out as if beading a string or even hearing her singing but she hasn't been able to just sleep.

When she was awake she was crying because she can't eat anything or do anything that she used to. Sometimes she seems to be meeting people and at one time she thought that her bunny that died, Mary, was right next to her. I understand that those things usually happen right before a person passes, and I don't mind any of that... it's when she cries out and has a bad dream that I breaks my heart. I'm sitting in her room now on my laptop so I can be here in case she cries out or needs me. Just now she was telling someone, "this is my family" and seemed to be showing someone a picture of her family. And then mumbled some things... then she asked which way to go, "This way or that way?"... and then she tried to sit up. She woke up and I asked her if she had seen the light and she said no. She asked me if she was going to go to the hospital and I said no. I asked her if she wanted to go to the hospital and she shook her head no and so I again told her not to worry that she will stay right here until it's time to go to heaven.

I can't leave her because she just calls me back every two minutes. I'm letting Karl sleep and I'll have my turn to sleep later. I hope this phase, even if it is her last, ends soon. I hate seeing her in mental agony and not being able to rest.

Ps: she also kept crying out with arms and legs whaling about, once she started hitting her own stomach and another time her chest when she coughed. She kept hallucinating and it was just awful. We couldn’t leave her for a moment for fear that she would do something to hurt herself or fall out of bed.


Nancy Taylor Jensen can't sleep. I'm in too much pain and have tossed and turned in bed for about 2 hours. Jessica said her final good-byes last night and hung onto me and cried telling me how much she is going to miss me.

She gave me tons of kisses as I told her that I was going to miss her too but that she needs to go to heaven. She also told her brothers that she loved them and said "I might die tonight". The boys are remarkable and said some sweet things to ...her. I called Justen and he came over before going to work and his wife, Ravyn came by with her mother to visit Jess too. Several times Jessica pointed to where her cousin, Marcus, was. I know he is going to help her adjust to her new life once she passes and that he will show her around. My cousin, Martin, also died from a brain tumor when Jess was just a little girl - about 13 yrs ago - so I'm sure she doesn't remember him now but she will on the other side of the veil. Jessica will introduce Marcus and Martin to all the CHD and "Tu Nidito" children that we've known who have passed and they will become great friends.

Jessica's breathing became much more labored and she was combative at times. The Lorazapam wasn't helping so Karl called his dad to come and help give Jessica a blessing. Karl started singing hymns to her and I stood and enjoyed the father/daughter moment. Then I went into the room and we both sang hymns to her while we waited for Karl's parents to arrive. Jessica became more relaxed as we sang. It was nice to have my in-laws here and the blessing was wonderful. Throughout the evening we were able to have Jessica's aide (and my wonderful friend), Renee, here with us. I thanked Jessica for bringing Renee into my life. :) And Renee shared her thoughts and feelings with Jess while she was still coherent.

I have a feeling Jessica has slipped into a coma. She was didn't respond when I went to bed at 3am... but at least she's been resting comfortably (finally) for the past few hours. Karl is sleeping in the recliner next to her bed. I'll try to get a response again a little later when I change her and if she doesn't respond then I'll call hospice.

Sometimes I hesitate to share too much here on fb (and on my blog)... but so many of you have told me how much my posts help you - so that's why I share. Of course it helps me to write things down but if sharing can help but just one person then it's worth it. You know... I wouldn't want anyone to have to go through watching their child suffer as Jessica has throughout her 22 years and then watch them die.... but my faith has been strengthened through all this in a way it couldn't have been any other way. My beautiful, pure, innocent, precious daughter has taught me so much... it's a privileged to have been her mother for 22 yrs in this life and for all eternity to come. Jessica loves life more than anyone I know... and that says a lot considering she's suffered 2 strokes, has been blind, paralyzed, had 5 heart surgeries, hemorrhaged, is developmentally delayed, has had countless other procedures, hospitalizations and other surgeries, ETC. She IS a miracle. Even after her death she will still be a miracle. She is JOY. And I can only imagine what a joyful event it will be once she passes into the spirit world and can do all the things that she's missed out on in this life. She will DANCE, RUN, SWIM, SWING and anything else her heart desires. And it's going to be quite the celebration. There are so many people who have passed on who love her and are waiting with open arms to receive her. I wish I could get a glimpse of that event - but then I would really want to go with her and I'm needed here. My husband and sons & daughter-in-law need me and I need them.

I've rambled on long enough. Thank you all for your love and support. ♥


Nancy Taylor Jensen is touched by all the love and support offered here. Amazingly enough, Miss Jess was able to wake up and talk today. She is mostly sleeping but definitely not in a coma as I had thought she was earlier. Her breathing is more labored and she is getting congestion in her throat.

She is able to wake up for a few minutes at a time and then sleeps without all the hallucinations. I am convinced that she had a reaction to the injection of promethazine that was given to her two days ago for nausea. I noticed that her m...uscle jerks and spasms increased greatly after the injection and the hospice nurse looked it up and that was a side effect listed... about the hallucinations... my thoughts were that it was part of the dying process or that her brain was being affected due to her electrolytes being off but now I'm not sure since she has come out of that phase. The hospice nurse thought it was the morphine since we can't tell for sure exactly how much her body is processing or at what rates because it's in the subcutaneous tissue and with her muscle mass deteriorating so quickly... we just can't tell. Whatever the reason, I'm so glad that it's over and am praying that it doesn't happen again. What an emotionally and physically draining time for us.

I'm beyond exhausted and am going down for another nap but wanted to thank you all for your love. Karl is taking time off work to be here for Jess, me and the boys. I'm so thankful that he is my husband.

Funny story: when Karl and I were dating I received inspiration from that Lord that Karl was the one I was to marry. (I had almost married someone else 2 years prior so I had it in my mind that I was going to be REALLY SURE before talking about marriage with anyone else). Shortly after the inspiration that I received, Karl and I were talking and I don't even remember what words I said but out of my mouth came - the Lord has told me that you are the one I'm to marry so what are you going to do about it? type of message. One brief instant of me thinking that I was the biggest idiot on all the planet and Karl says, "You're right". We spent hours upon hours talking, getting to know each other - our goals in life, spiritual goals and family goals and they were exactly the same. After a whirlwind (and challenging) courtship we were married on April 19, 1985 in the LDS Mesa temple for time and all eternity. I've been married to the most amazing (and sometimes frustrating) man on earth for 25 years. hehe! I love him to pieces and he loves me with all his heart too. I tell him all the time how glad I am that I listened to the Lord and MADE him marry me. hehe He says that he is glad that he listened to the Lord too because during that small pause he felt the Spirit telling him that I was the one for him too. Good things happen when you listen to the Lord.

Just like Jessica said, "This is the life! I have a family who loves me and I love them too!" ... and I extend that to include all of you who are praying for us. This is what life is about!

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!

Saturday, May 22, 2010

New blog design, Jessica's birthday & Updates

I was getting tired of the same-ol thing and wanted something to cheer me up so I changed the background on both this blog and my craft blog. I find it to be quite cheery.

So here's a quick update on us:

Karl is still working hard, Justen and Ravyn are still blissfully married and have stars in their eyes, Brandon is finishing up his junior year and did a tremendous job as "Felix Unger" in "The Odd Couple". He sure has a talent! I hope to add photos of this play soon. I even got a few short clips! Austin is about to graduate or "promote" as they are calling it now from middle school to High School. I can't believe my youngest child will be in HIGH SCHOOL!!! When, oh when did they grow up? I still remember when I had one in preschool, one in elementary, one in middle school and one in high school! Boy, that was quite a year having them all in different schools and going and coming at all different times. Now I only have two left in school. Anyway, we are looking forward to a productive summer. Austin and Brandon plan on working on scouting projects and other fun things.

Jessica will be 22 years old on June 3rd! I can't hardly believe it. We are planning a party on June 4th (Friday) so if you are in the area and want to come, email me at fancydancycrafts @ cox . net (no spaces). Or if you'd like to send her a card, email me. *smile*

Unfortunately Jessica is still having a lot of pain. The new medication seems to be helping some and I think that her belly is definitely softer, but she is still in pain. She has been eating less the past few days and she looks bluer. She told me that she felt palpitations (she opens and closes her hand really big to explain what it feels like) so I put her on the pulse-ox and her heart rate looked good but her oxygen sats only went up to 67% at rest. (Her goal is 77% - 78% and normal is: 96% - 100%) That is also on 3 lts of oxygen... she always has it on and we always measure her sats with it on. The oxygen can help bring her sats up by 5% - 10% so it's worth it to keep it on... but it can only do so much.

I've had a few dreams lately, one was yesterday while Jessica and I were sleeping, and I dreamed that Jessica had died. I hurt with my whole being. I wanted to desperately to hold her, kiss her and see her smiling face. As I was waking up my body was hurting from my fibromyalgia so I didn't want to wake up but my heart was hurting so badly that I didn't want to stay asleep. I know that I'll feel that anguish one day and I won't be able to go into her room, wake her up and hold her. I hate having to go through this grieving before she is even gone. And I hate seeing such a beautiful young lady (aka: baby girl) suffering so much pain every day. Sometimes I just want to scream: "My baby is dying!!! She's in pain and I want that pain to end! But I don't want her to go!" I was crying a little as I was waking up thinking, "I'm not ready for her to die.... I'm just not ready!" But when will I be ready? I lie and tell her that I will be fine and for her to go ahead and go to heaven when it's her time. I put on a brave face and hold her as she tells me that she wishes that she was already in heaven with Marcus (her cousin who died 1 1/2 years ago) and Donna (our next-door neighbor who died last Nov) because that way she won't be in pain any more. She tells me that she wants me to make a game room out of her room so that her brothers can go in there and play games, watch tv and remember her. What's odd is that she has always been so protective of her room that she would never let her brothers even step foot in it without yelling at them! But the last year or so if she has been watching something on her tv and one of her brothers has stepped in to ask her something and gotten interested in her tv, she has invited them to sit down and watch it with her. I think that's pretty cool. She knows and yet she doesn't. She seems to get reality and fantasy mixed up more and more. She asks complicated questions and doesn't understand the answers and she repeats things multiple times not realizing that she's told me 3 times already. Oxygen deprivation is a terrible thing.

Oh, did I forget to update what is going on with me? Well, let's see. I've made a few cards (my creative therapy) and have managed to clutter up my whole craft room! LOL I've reconnected with some ooold friends on facebook. One good friend from college and one from high school. It's like we've picked up just where we left off. Actually, my friend from college called me. It was great to hear her voice again! It's been about 10 years since I last saw her and 12 years since I saw her kids. My friend from high school... let's see, it's been ... since I first started college since I last saw him. I don't think I'm going to put how many years that's been. HAHA! But it was great to tell him about my family and to find out about his. Boy, life is sure different than what we had in mind way back then.... but ya know what? It's still good. I grieve and care for a dying "child" but she brings me so many blessings that I can't even count them all. My husband is the absolute BESTEST and my sons are quite amazing. I see them growing and changing. I've had quite a few great talks with them one-on-one or even together. I love it that they feel then can trust me. Brandon wrote something so sweet on my fb page. I sure love that kid! I posted that I was going through a mid-life/identity crisis. He told me how much he appreciated me being his mom and that he can't even imagine not having me as his mom. He actually posted that on my fb wall for all the world to see. Not too many 16 yr old boys will do that. :-) My other sons tell me they appreciate me and that they love me too. I also have a daughter-in-law who tells me that she loves me and what a neat thing that is! I'm also trying to organize my house. I just need a back-ho and a huge garbage bin out front. LOL I want to make my house a haven. I also need it to be presentable for guests in 2 weeks! *gasp!* Thankfully Karl will have a few days off right before the party so he can help do the yard work and get our gazebo lights and fountain working again. (and take care of weeds, etc, etc) I just wish my body didn't hurt so much, could sleep when I'm actually in bed and that my allergies hadn't kicked in and caused my sinus problems. It would help me with all those goals. ;-)

Please continue to keep Jessica in your prayers. We want her to have a great birthday! She has told me several times, "What if I have a bad tummy ache on my birthday?" and "I want to be able to eat some of my birthday cake at my party... what if my tummy hurts too bad?" Of course we always think that this could be her last birthday, but if things continue going down-hill like they are.... I'd really hate to see how bad she would be a year from now. So all good thoughts and prayers are welcomed. Thank you for visiting!

Friday, April 30, 2010

GI doctor visit

We took Jess to the GI doctor yesterday. She definitely has poop backed up inside and that's what is causing some of the discomfort. If left alone it could cause an obstruction which will lead to death since surgery is not a viable option for her. When the doctor listened to her he said that she had NO motility at that time. We started her on a new pill which may be hard on her. It works somewhat like lasix does except that instead of working in the kidneys, it works in the GI track. We are hoping that it softens the stool that's in there and gets it out. I just hope this works. The doctor said it's her last ditch effort. (If you'll remember, Jessica has developed Ischemia of the bowels. The artery that takes the blood to the gut has narrowed and the intestines are basically dying do to lack of oxygen. Surgery is NOT an option. Risks are high and benefits would be low if any.)

She also has fluid in her belly so we are hoping that the lasix that the Peds Cardiologist prescribed a couple of weeks ago will help take care of that. The PC says that she is in the last stages of her heart disease and believes that her CHF is worse. He increased her lasix and digoxin in hopes it will help make her more comfortable. (I posted some of this info in my last post.)

The new medication could be hard on her because it could cause diarrhea. (Lasix make ya pee very frequently too.) We are always worried about her fluid status because her blood is too thick due to low oxygen but she carries too much fluid due to CHF. So with this new pill, on top of the lasix, we'll need to watch for dehydration. Another thing that's hard is that she can't run.. and when you have a medication that makes you RUN to the bathroom.... well, you can imagine how hard that is on her. Poor kid! She is sooooo miserable and hasn't eaten much in the last couple of days. I'm just praying this helps or we're in big trouble.

Please keep her (and the rest of us) in your prayers.

I really like the GI doctor. He always tells me what a wonderful mom I am. I don't do it for the praise, but it's nice when someone sees your sacrifices and devotion to your children and commends you on it. :-)

Monday, April 26, 2010

One Step Forward - Two Steps Back

Well, we made an attempt to help Jessica's pain so we went to one pain specialist who recommended the fentanyl pain patch. This doctor was very nice and took his time to explain things and answer questions. The only thing wrong was that he wasn't taking on-going patients anymore. This was a consultation only. In other words, he would give his recommendations to Jessica's primary care practitioner (PCP) who then could decide whether to follow them or not. Fortunately, Jessica's PCP was willing to prescribe the pain patch. We tried it and thought it might be helping a little so we had the PCP increase it. Jessica had horrible complications to it. Not only was she is just as much pain as before but she was extremely tired all the time which made her feel "horrible" constantly. We knew that fatigue could be a side effect but it should wear off within a week or so. Two weeks after the increase of the dosage, Jessica started having horrible nightmares about a monster who would tell her things like: "Just give up! You are NEVER going to feel better!", "You are ugly and a bad girl", and other awful things that horrified poor Miss Jess. She was afraid to go to sleep after that. She came up with the idea to draw the monster as a silly looking monster so if he came back in her dreams she could tell him that he is just silly looking and to go away. She was so proud of herself for coming up with that idea.

I called and spoke to the PCP and we put her back on the lower dose of patch for a week and then took her off of it. I was at my witt's end not knowing what to do for Jess. She would be in so much pain that she would hold her tummy and cry many times a day. She would try to take her mind off it by playing her favorite games but she couldn't concentrate due to the pain.

So I decided to call hospice and see if we could enroll her again. If you recall (or are new to my blog and/or Jessica's story) Jessica had lung bleeds about 6 years ago. After several tests it was found that her collaterals that go from the aorta to her lungs were bulging, bursting and bleeding into her lungs. A CATH was done and two collaterals were closed off. The problem is that the collaterals are her main source of blood to the lungs and if they close off too many then she would die. The peds pulmonary doctor suggested we place her in hospice since there were "thousands of collaterals bulging, just waiting to burst". Jessica was coughing up blood daily and had to carry a bowl around with her everywhere she went so she could use it to catch the blood. It rocked our world in such a bad way to know that the time we had been fearful of was actually here. It was horrible to sit with Jessica as she coughed and gagged on the blood and cried saying that she wasn't ready to die. She would WAIL. My sons would hide and cry too. It was the most horrible thing we had ever experienced and considering Jess had been through strokes, paralysis, seizures and lung hemorrhages (in the hospital during and post surgery). Anyway... the hospice nurse suggested to the pulmonary doc to try morphine therapy for the lung bleeds. She said that it had been used in some other patients for lung bleeds and maybe it could help Jessica. So Jess was started on morphine and after a few months her lung bleeds were down to only a few a month. Then down to less than one a month and hospice had to leave. Their job is to help with comfort care for someone who is dying .... not getting better. So after a year here, they had to leave. We have kept in touch over the past 5 years and Donna and Linda (the hospice nurse and social worker) even came to Jessica's High School Graduation!

So I called hospice and they sent Donna and Linda out to do an interview. In the meantime they gathered the information they needed since Jessica was no longer a child but an "adult". The rules for admission for an adult is much more strict than that for a child .... and the agency has cracked down and are being more strict about following the rules. So.... in order for Jessica to be able to be admitted into hospice, she would have to have a doctor sign a form saying that he/she believed that Jessica would not survive 6 more months. Also, with an adult, they do evaluations every 2 months and if they see improvement then the patient is discharged until they deteriorate again. Awful, huh?! I felt like they're saying, if you don't die fast enough then you don't get our support. But I knew in my heart that Jessica most likely will survive 6 more months and that none of her doctors would sign anything saying that they believe she has less than 6 month's time.

But the good news is that talking to Donna and Linda, we came up with something of a plan. Donna recommended that Jessica take a long-acting morphine pill and then take the liquid only for break-through pain. That way she won't have the highs and lows like she has been. So I called Jessica's PCP and left a message for him to call Donna. (She had already left a message for him to call her but he hadn't called her yet.) So yay - the PCP called Donna and thought it was a good idea for the morphine pill/liquid.

Jessica had improved quite a bit since we started that. The morphine pill lasts 12 hours so that gives her a steady dose of medication. Jessica is still having pain and at times it is severe... but she is having a lot more times where she can smile, have fun and do the things she enjoys doing.

In the meantime we had a peds cardiologist appointment and he agreed to increase her digoxin and lasix. He feels that she is in the end-stages of her heart disease and that it's progressing. Her congestive heart failure is increasing so she is retaining fluid and feeling the effects of it. We need to get her blood taken this week to check her dig levels as well as blood count, etc.

We go to see the PCP (primary care physician) on Tuesday and then to see the GI doctor on Thursday. I have to take my 2 boys to the doctor later today so I've got a very busy week this week! I'd better head off to bed.

I realize that I've been neglecting my blogs and it had been my intent (New Year's Resolution and all) to increase my posts on here and my craft blog. Crafting is my therapy and I really enjoy being creative.

So thanks for stopping by! I'll try to keep you posted a little better.

Thursday, March 18, 2010

Good Medical Sites for Research??

Hello to all my heart family.
Life has been quite rough for Jessica and I need to do some research. Not only do I need to research medications and side effects but also diagnosis and treatment options. We are running out of options on how to bring Jessica's pain level down and her pain is getting worse. It's so hard to see her in so much pain day after day. The GI and pediatric cardiologist don't have any suggestions either.

The diagnosis is Ischemia of the Bowels amongst others. I would also like to know what all the hoopla is about the pain patch causing deaths? Or is that just the ambulance chasers trying to get money?

I need to know what websites are good for researching these types of things. All info would be greatly appreciated.

Thank you!

Friday, March 12, 2010

Some important changes

I had to change a few settings due to an inappropriate comment. I'm afraid I'm going to have to approve comments for awhile.... not that I had that many in the first place. LOL The comment was OK but it had an inappropriate link.

Please know that I still want you to leave comments in fact... I also took out my cbox since it hadn't been used in moooooonths. Just one less thing taking up space on my blog.

I hope to update soon and have some current photos.

Thanks for stopping by!

Saturday, February 13, 2010

An Amazing Poem by an Amazing CHD "Child"

The following post was shared on one of my heart support groups by Becca's mother. Becca has basically the same CHDs as my Jessica. Becca may be younger but is more "mature" mentally since Jessica is at around a 7 - 8 yr old level. I had the opportunity to meet Becca and her family several years ago when I traveled to a CHD event. Becca and her mom, Chris, have always been a great support and inspiration to me. They have been through a lot of the same issues that we have but also some very different ones. It's always amazed me how the basic same CHD can be so different in so many ways in two different "children". Also, Becca was the FIRST Christmas socks baby. She is the one who started it all. (If you don't know about the Christmas socks story, here's our experience: JENSENLAND and then click on Jessica's journey with CHD ... it is almost 1/2 way down the page but go ahead and read about Jessica's life before that event).

I got special permission to share this post along with the poem with you and it's my honor to do so. I thank Becca for putting into words what I'm sure MY daughter is feeling. This comes on the heels of a very painful & emotional night I spent with my daughter. Here's your tissue warning.

"Written by our 17 yr old daughter Becca born with TOF (tetrolagy of fallot), PA (pulmonary atresia), pulmonary arterial hypertension. She has had 4 heart surgeries, one surgery for a life threatening infection, pacemaker/CD surgery, 20 caths (or more); 44 pills a day, low salt diet, 02 at night, above 3000ft and when sick. Has been evaluated for a heart lung transplant but at this time can continue to be medically managed.

Becca wrote this for a poetry contest through school last week.



I am a miracle child

Struggling the first months of my life

Given a 13% chance of survival to the age of 5

Struggling for years.

Today I am 17

I am a miracle child

Life-saving battle scars adorn my body

Changing my shirt, I see the bright pink scar running down my chest

Always a reminder of my yearning for life

I am a miracle child

Fear is part of me

I am afraid when my heart skips a beat

I fear being in the hospital

Alone. . .

In pain. . .

Not knowing. . .

I cry at the very thought

I fear dying

I am a miracle child

I know I am not like most

Valuing life

I celebrate the morning

I appreciate those who love me

And know

Everyday truly is a gift

I am a miracle child

Being a miracle child












My life

I am a miracle child.

Tuesday, February 02, 2010

Quick little update:

So much has happened ... where should I start first? My oldest son, Justen, got married to Ravyn Martyn-Dow on December 19th, 2009. They have been engaged for almost 2 years so it wasn't a huge surprise but the planning of the wedding seemed to be fast a furious! lol Ravyn's mom, Jaqui, did an excellent job of putting things together. I was included in the plans and we used everything that I had purchased 1 1/2 years ago when the "kids" were first going to get married. After reviewing their financial situation 1 1/2 yrs ago they decided to postpone the wedding. Jaqui provided some beautiful decorations and the cake was beautiful and delicious. It was a very nice ceremony performed by Bishop Gibson and the reception followed right afterward.

Jessica was able to attend her brother's wedding and was even a bride's maid. Brandon and Austin were groomsman and did an awesome job.

I don't have many photos but here are a few from my father-in-law's camera:

Here's the happy couple:

awwww... how sweet!

We are a goofy family! hehe... Justen and Ravyn wanted a silly photo and they got it!

Here's the Taylor and Jensen grandparents with the couple. (Taylor on the left - Jensen on the right)

I can't wait to see the photos from the photographer. I'm sure they will be great!

I knew Jessica wouldn't have the energy to last the whole evening so I had her favorite nurse, Renee, help get Jess ready, come to the wedding with us and when Jess got tired, Karl took them both home and then came back to the reception. I was able to just be the mother of the groom and enjoy my evening. I danced with my husband, all 3 of my sons and all 3 of my brothers... 2 of which had come from out of state to attend the wedding. The evening was wonderful. Two of my friends, Janice and Reesa, came and helped in the kitchen. We couldn't have done it without them too! We are so blessed that Jessica was able to be there and enjoy herself. We never would have believed that she would survive long enough to see her brother get married back when she was in a coma and hemorrhaging when she was 3 years old. What a miracle she is!

Friday, January 15, 2010


Happy Birthday Little Moo. It's hard to believe you would have been 9 years old today. It seems like just yesterday that you were born.

In fact, remember the day you were born... it just happened to be one day before my niece, Marissa was born. I "knew" you when you were still a bump in your mum's belly. Your dad came online and shared you and your experiences with me and I came to "know" you. You're an amazing little girl and even though you've left your body behind, you are still very much alive. You've made a huge impact on my life even though I never met you in person. You had a lot to do in your very short life here on earth and you taught so much to so many people. Love. Courage. Strength.... And you loved to smile. Of course you made everyone around you smile too. In fact, many times the stories your parents shared about your shenanigans made me laugh ... all the way across the pond.

Jessica and I got to see you via webcam and saw what a cute little girl you were. You and Jess have so much in common! You both had heart defects, strokes and other complications every step of the way... but neither of you gave up. Every challenge you faced made you fight all the more. You accomplished your mission in this life faster than we would have liked. But you did it!

Bethany, you are very well loved and missed. Enjoy your Birthday in Heaven and dance and play to your heart's content. We'll see you all in good time.