Friday, June 05, 2009

Jessica turned 21!!! But is sick yet again!

First of all, I want to thank those of you who sent emails, e-cards and snail-mail birthday cards to Jessica. She has been so happy to receive them and asks a lot of questions about who it was that sent them to her: how old are their children, where to they live, do they have heart problems too? etc. There are several emails and e-cards that she hasn't seen yet because she has become quite ill - AGAIN.

Jessica's party on Saturday was a hit and she really enjoyed having people over... but she was quite blue and tired. The party was quite fast since I knew her stamina was very low. When it was time to open her gifts, Grandma Jensen sat beside her to help her since she seemed so blue and tired. I talked to my MIL later who told me that Jess was even shaking a little. But she had huge smiles for everyone and was so happy with not only the gifts but of course everyone who came.

Jess was quite tired and more weak the next few days and I rescheduled an appointment that she was supposed to go to on Monday because of it. The young women from our church came over Tuesday night and celebrated her birthday then. (Tues is their usual activity night). Jess was having a hard time being perky and happy even with cupcakes and pudding cake being served. Several times she leaned over on a pile of pillows on the couch and lay there. I gave her some morphine and got my camera out. She then remembered that she has a camera on her new DSi that she got for her birthday so she had a good time taking pictures of everyone. One of the leaders brought her 8 month-old baby, Malia, who Jessica just loved! The ladies and girls left after about an hour and Jess was in a lot of pain. She said her head and stomach hurt. I wasn't able to get her to bed until around 4:00am due to her pain and when she woke up the next day (1:30pm) she had such a bad migraine. I gave her tylenol and morphine, turned out the lights in her room, turned off her tv and made her have a nap. After sleeping a couple of hours, that usually does the trick. Not this time. By 4:00pm her tummy was hurting even worse and she threw up - a lot. Poor thing can't even sit up by herself during this horrible process so I have to try to sit by her and hold her up. I gave her a pill for nausea, more tylenol and morphine. After awhile she was able to go back to sleep and slept until close to 8:00pm. I didn't know what I should do so I woke her up and tried to get her to take in some fluids. She had to go potty and it was diarrhea. She was able to keep more fluids down, she perked up and ate some soup too. As I was getting her into bed at about 3:00am, her stomach started growling and I had to fix her more soup and crackers. She finally got to bed at about 4:30am. I was beat! I hadn't slept much during the day from worry and also taking care of her. I was hoping that she would be all better by the next day. - wrong!

The next day, Thurs, she woke up again with horrible tummy ache and head ache at 1:30pm. Again she had a nap after meds but this time I got her up at about 4:00pm. She was feeling better, and even smiled and laughed some. Karl was out of town most of the week but got home in the late afternoon and Jess was so happy to see him! Unfortunately twice tonight I sat with her in the bathroom while she tried to go poop - practically doubled over in pain and extremely blue and short of breath just trying to push. I thought she was constipated but no... it was runny and a strange color. She could be having another Ischemia attack or a bowel obstruction. Each time I help her in the bathroom (which is every time she goes) I look for blood. A very bad sign for her. The throwing up and diarrhea are both signs of Ischemia. I'm blaming it on the migraine she had but I can't be certain. She was just sick a few weeks ago with this same thing except it was worse last time. (Although I just don't know how she is going to feel tomorrow). Yesterday she was so sick that I started to have an anxiety attack. I just kept praying that she wouldn't die while Karl was out of town. Things are pretty tough over here a lot of the time.

Jess actually laughed and smiled a bit tonight and was able to eat some soup... but then she had the bowel thing after that. She was crying and asking "why me?" I got her calmed down and told her she needed to not cry but to save her energy to push when she needs to. I don't know why her. Sometimes I feel she has been through far more than anybody ever should and it keeps going and going.

The most amazing thing to me is how she keeps trying to be happy. She tries to keep herself busy to keep her mind off her pain. She amazes me. We talk a lot about death, what it is like, what her cousin, Marcus is doing... she dreams of Marcus every night and they go to Disneyland together. In the last few weeks she has told me that before going to Disney they sit on Marcus's bed and talk. Then they go and check on his parents and his brothers. Once they know everyone in Marcus's family is ok, they leave to go to Disneyland. Jessica told me the other day that when she is in heaven she will check on me every night before going to Disneyland with Marcus. I give her a hug to give to Marcus every night and every day she gives me a hug from him. She is no longer terrified of dying like she was 5 years ago when she had the lung bleeds. Of course I dare the bravest person to NOT be panicky when they are coughing up blood - choking and trying to catch their breath but can't. It is a horrible experience. So we are extremely grateful that she no longer deals with that. We are amazed that she stopped having lung bleeds. (Kudos to Hospice for helping us start the morphine therapy!) Jess has come a long way since then - we all have.

A dear, sweet online friend of mine just recently found out that her husband has cancer. This amazing friend has a lot of cancer in her family and watched her sister fight it many times throughout her life before passing away.... and she also cared for her mother while she died from cancer quite a few years ago. My friend is feeling deflated and kind of like God hates her. Well, who can blame her? I started looking for something that might help her (and myself!) and came upon this talk given by one of our LDS leaders. It's called: "God Loves and Helps All of His Children" Here are some passages from the talk:

"An... essential way to receive God's help is through prayer. We are commanded to pray to God, our Father, in the name of Jesus Christ. The admonition is, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened." ( Matthew 7:7-8) Heavenly Father answers all sincere prayers.

As the Lord's prophet, President Monson counsels: "At times there appears to be no light at the tunnel's end-no dawn to break the night's darkness. . We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

I remember standing over Jessica's hospital bed when she was 3 years old and wondering if she would survive the day... watching her little body in a coma, having seizures, hemorrhaging and fighting a blood infection. We were told by several specialists that she was in BAD shape and most likely would not survive the day. The only person Karl and I could turn to was God. He was in complete control. The doctors didn't know how to help her. Jessica didn't even seem to be inside her body at that time. She didn't look like herself in a coma. We had seen the tubes and wires everywhere when she had her first surgery (at the age of 5 months old) and we knew what she would look like post-surgery... but this was 4 days post surgery and all these complications were making us face the fact that she was indeed dying. It was completely up to the Lord. Our bishop met us at the hospital and counseled us, prayed with us and even cried with us. Finally when both Karl and I could completely and with all our hearts say "Thy will be done"... she started to turn around. The doctors were doing blood tests every 15 minutes and had an OR waiting for Jessica. The cardio-thoracic surgeon told us that they wouldn't take her to the OR until absolutely necessary. He was certain that if he opened her up to find the bleeder then it would cause all her scar tissue to start bleeding again and she would not survive the surgery. (During Jessica's heart surgery 4 days prior, her shunt which takes blood to the lungs was accidentally cut and she bled out for 8 minutes while they finished opening and placed her on the bypass machine. After that all her scar tissue (which was excessive) and other tissue hemorrhaged for quite some time and even after closing they had to reopen to stop some bleeders.) Jessica had been in critical condition and was finally improving when she started hemorrhaging again, having seizures (which was later found out was caused by a massive stroke affecting 5 areas of her brain) and they found the blood infection. Any one of those things could be life-threatening but all of them together.... certainly she would die. You can see the surgeon's hesitancy to perform another surgery! He kept telling us that the numbers didn't match. Jess had lost 1/3 of her blood volume in 4 hours and yet her blood pressure was becoming more stable and her blood count was ok. After about 4 - 5 hours the surgeon told us that he was not going to have to do surgery. He said, "A power far greater than ours saved your daughter today. We did nothing but stand here and watch a miracle."

About a week later Jessica was able to breathe on her own and came off the ventilator. She was blind and paralyzed from the stroke. She was so weak and couldn't take comfort in my holding her. After a difficult day at the hospital I took to my knees at home and prayed to the Lord to help her be comforted. I told Him that it wasn't fair for her to have to suffer through this alone. I have taken care of her through many illnesses, surgeries, therapy, procedures and through all this Jessica at least took comfort in my holding her. That day Jess was extremely agitated and seemed to be afraid of everything. Her vision seemed to be improving a tiny bit but only enough to scare her. I could only imagine this beautiful little girl who was attached to all the wires and tubes being held by someone who sounded like Mom, felt like Mom, smelled like Mom but looked like a monster! She even seemed to be afraid of her own hand and she practically threw herself off of the bed trying to get away from it. So with all my heart to told the Lord that no matter what, I would care for this precious child. I've taken care of her through it all and I'll take care of her blind for however long she is here... just please - help her to be comforted, I prayed. A wave of warmth and calmness engulfed my body and I ended my prayer in tears. I meditated for a few minutes and then called the hospital. The nurse told me that Jessica seemed to have calmed down in the last 10 minutes or so. I had called my sister before I had prayed and she came over and sat and talked with me. I had wrenched my back trying to hold Jess and comfort her for 8 hours that day and the nurse insisted that I stay home and get some rest. Karl was new at his job and had already used any sick time he had so he was working and then had to come home and sleep. He wouldn't be able to visit Jessica at the hospital until after work the next day. So I went went to bed after calling the hospital again and they said she had not only been calm but had even eaten something! I woke up in the middle of the night and called the hospital again. They said that she was doing so well they were considering moving her out of the ICU in the morning! Several of the tubes and wires had come out since my last phone call! The next morning she was in the process of being moved out of the ICU. She was in a double occupancy room and in the 2nd "bed" (crib). I didn't say anything as I walked into her room. She immediately turned her head and cried out, "Momma!" SHE COULD SEE ME! I ran across the room, picked her up and hugged her as we both cried. I stayed the whole day with her. She was still quite sick but she could see and was comforted by me being with her! When Karl arrived at the hospital she could recognize her Daddy, too. She still had a lot of problems with her vision but it was slowly returning. When she went home - 3 weeks post surgery - she still was mostly paralyzed on her left side, her vision was still iffy, her speech was no where near it used to be and she couldn't sit or crawl - much less walk. We had a LOT of therapy and pain to go through still but she did regain most of what was lost.

I have seen miracles and sometimes wonder why I am so privileged to have seen these in my own life and in my child's life. I know that sometimes the miracle isn't in the healing - but in the relief of the pain - the return to our loving Father above.

I am trying to read more uplifting literature and help myself and my family to more readily deal with the trials in our lives. I know God doesn't hate us... He loves us and wants to help us through our trials. We are here to learn and draw near unto Him. I want to feel the comfort of the Lord and help Jessica through her difficult times as well. (who just got up out of bed yet again at 5:20am)

I'm thankful for all of you - family and friends who help us through the difficult times and celebrate with us through the good ones. Please pray that Jessica's pain leaves her body so that she can sleep (at night, lol) and enjoy spending time with her brothers while they are home for the summer break. Pray that I get some sleep and 5 minutes to myself. lol


awendybird said...

I will pray for Jess's comfort and that she can get on a regular nighttime sleep schedule ;) and that you can get some much much needed rest and sleep. May angels hold you both in their arms infusing you with the love and strength of our Heavenly Father.

Awesome Mom said...

You and Jess will be in my prayers! (not that I don't already pray for you) It really is amazing to read how far Jess has come and what a wonderful and strong person she is.

Melany aka Supermom said...

I'm so sorry that she is sick again. I missed her birthday, just want to wish her a happy birthday