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 didn't 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, popsicles, 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, Nancy