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.