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)
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.
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. ♥
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!