Still Holding on..............

I am not sure why Chris is still here but she is still holding on. Her breathing is very shallow and fast and she still has fevers all of the time. I don't know why she is still her. I think its because she doesn't want to leave the girls.

This morning I brought Lexi in to say good bye to her. She told Chris she loved her and that she would she her soon. I hope that helps her.

No more tylenol

The tylenol is no longer working to bring down the fevers. She was burning up all night. Her fever would go as high as 103 and they tylenol would only bring it down to 101. the problem is that her body is now attacking her transplanted organs since she isn't on the anti-rejections any more. The nurse says its just time for her to go home and we all agree.

We are stopping the tylenol. Ultimately it is the best thing for her as stifling the fever is just prolonging things. I told Chris is was ok for her to let go. My mom told her the same thing. Chances are the high fever will put her into a coma or she will have another stroke. I am not sure what is going to happen today.............

My mom had an amazing experience

She was at my house yesterday and the girls were napping. She had her hands over her face and she was talking to her mom to help her get through this awful time. All of a sudden she felt pressure like someone put their hands on her shoulders and felt a sudden calmness about everything. Looks like both grandma and nana are in my house right now.

Chris is holding on.

Chris in true form is fighting. Her organs are no longer working except for maybe her heart. Her blood pressure is still in normal range but she no longer has any bladder control and she has constant on and off fevers.

Of all her organs her heart has always been the strongest. That is why her blood pressure is pretty normal still. She does not really respond to us anymore. I will sit next to her and hold her hand and talk to her and all she does is twitch her eyes but she cannot open them. This is just dragging on so long. I want this to be over for her sake already. She deserves to be free from her earthy body that has failed her so terribly.

We are all ready, including Chris. We are just waiting at this point. All arrangements have been made and she has seen everyone that is closest to her. All we can do now is pray for God to release her from this world.

Approaching the end of the journey

We don’t have much time left. Christine is fading away. She barely wakes up now and when she does stir she is not really “here”. Yesterday she woke up and tried to talk to me but I really couldn’t understand what she was trying to tell me. She has been getting off and on fevers from the dehydration. Her blood pressure is starting to drop and her breathing is becoming erratic.

Something else happened yesterday that startled me. When my father was back there talking to Chris she stared out the window and asked where nana was. My nana died when I was 14. I didn’t realize until today what really happened.

My brother’s girlfriend is into the meta physical. Occasionally she can see and feel spirits. Yesterday she was overcome with energy in my house. She got dizzy and started sweating. That usually means that a spirit is present. The name Al and Alex kept coming to her and she didn’t know why. That was my grandfather’s name. So it seems Chris saw our grandfather and was asking him where Nana was. She also sensed that something significant was going to happen on Thursday.

For some reason this revelation has brought me great peace. It has helped me come to the realization that Chris is going to be cared for and protected in her journey to the other side.

Oscar doesn’t necessarily believe it, but that is ok.

I spoke too soon.

Yesterday afternoon was complete chaos. Chris woke up around 2:30. She was ok when she first woke. She had a couple of bites of sherbet and a couple of sips of water and that was it. All of a sudden she started laying in the fetal position like she was in pain. When asked if she was in pain she nodded no. She could not speak. Mom tried to talk to her and all she did was moan. She did not even respond when Lexi tried to hold her hand.

I came home early to see what was going on. I got home around 4:20. I tried to talk to her and she looked like she was conscious but not really. When I tried to talk to her it was like she wanted to speak but couldn’t. She would not squeeze my hand either. Her stomach was also quite swollen. The dehydration is starting to affect her.

The nurse, Carmen, took her temperature and she had a fever of 104. I am pretty sure she had a mini seizure. Carmen gave her a tepid sponge bath while I ran out to get Tylenol suppositories. By the time I got back Carmen had gotten her tempt down to 101.5. She then gave her the suppository.

At this point she was able to speak to me a little bit. I would call her name and she would look at me and say “huh”. I asked if she wanted sherbet and she said ok. She kept zoning in and out of consciousness whenever I tried giving her a bite. She took 3 bites. She fell asleep and I decided to leave her alone. She slept the entire night.

I am pretty sure it was a mini seizure but we just don’t know. The nurse said the dehydration is what is doing this to her.

She woke this morning and I was able to talk to her a little. I told her what happened the previous day and she remembers none of it. After talking to her for a few minutes she decided she wanted to go back to sleep. I suspect she will be sleeping a lot today.

She woke up around midday and I talked to her again. She doesn’t sound right to me. I can’t place it but she just sounds off. She swears that she is ok. She says she is not weak and not tired. I asked mom how she looked. Mom said that she looks exhausted and she is very pale. Mom made her some broth and now she is sleeping again. She is having some nausea so I suspect it is from her kidneys not working well or possibly not at all.

All is quiet

The last few days have been relatively quiet. Christine has remained stable. She has had about 5 to 6 hours of awake time usually in the late afternoon and early evening. There has been not much change. She is still eating her cream of wheat and sherbet. Friends are still coming to see her which is really helping her spirits. So other then that there really is not much to report.

Christine's History

I have never really posted a history of Chris' condition so here it is.

Chris became a diabetic late in life. In 1987 at the age of 17 she developed the chicken pox. No one really thought anything of it until 1992, when at the age of 23 she developed type one diabetes. We later found out that she had the diabetic gene all along and the chicken pox was the trigger it needed.

Christine did not have health insurance as she was working as a part time warehouse clerk so the next few years were challenging. She was in complete denial about her condition so her sugars were completely erratic. She was not taking proper care of herself.

In 1995 at the age of 25 she started to get really sick with uncontrollable vomiting. The doctors had no idea what was wrong with her. After being in the hospital several times that year she dropped down to 85 pounds (she is 5’8”). Since the doctors didn’t know what was wrong they just assumed she had an eating disorder and placed her in a treatment center for anorexia patients. She was in this facility twice.

When she was released she did rather well for a few years. In 1999 she got her dream job. She was a public service aide for the Broward Sheriff’s office in Fort Lauderdale, Florida. She loved her job and the best part was she now had medical insurance.

Her first few years on the job she did not get sick at all and was doing really well. In 2002 she started to have the episodes again and would wind up in the hospital. Her sister, Jeanne, did some research on her symptoms and determined that what she had was gastroparesis which was related to her diabetes.

When Jeanne talked to the doctors they agreed that this was most likely the problem. They begin running a batter of tests including stomach emptying studies to confirm the diagnosis. The episodes continued. They started her on Reglan, compazine, eruthromyacin, and Zofran for the nausea. Ultimately she was given Phenergan for nausea since it seemed to be the only thing that worked. At this time they also attempted the botox injections. The first injection worked and the second one didn’t.

After multiple hospital stays in 2003 at the age of 33 she was approved for the gastric pacemaker. The pacemaker was placed and she did well on this for several years.

Life went back to normal and she got to do the things she loved doing. Working, going to church, and spending time with her family. She would drive up to West Palm Beach visiting her sister and her then fiancé often. Things were looking up for her. The pacemaker was working well and she was keeping her sugars under control with a pump. She was the healthiest she had been since she was a teenager. She was looking forward to being a bridesmaid at Jeanne’s wedding.

The end of 2004 she started to have problems with her kidneys as a result of the constant high sugar levels during her vomiting episodes. Her kidney function was severely impaired. One kidney was not working at all and the other was only working at 6%. She was immediately started on dialysis. She was on dialysis 3 times a week, dealing with the gastroparesis, and working full time. She handled it all.

In December of 2005 Christine received the call that there was a match and she would be getting a new kidney and pancreas. This was the best Christmas gift she could have ever received. The family spent the night in the hospital while she had the surgery. The recovery was hard but she did really well. Before we knew it she was back to work and doing great. She no longer needed insulin. For the first time ever Chris could eat without worrying what it would do to her sugar.

The peacefulness she was feeling was short lived. In April of 2007 she moved in with her sister. In February 2007 the episodes started to come back. Her first night in her sister’s house was after a hospital stay. In June of 2007 she was having a lot of pain. She had a bladder stone that needed to be removed. After the surgery they gave her morphine for pain; big mistake. She couldn’t stop vomiting. She was released from the hospital on TPN as she could hold nothing down. She was in the hospital constantly.

The doctors told her that she needed a feeding tube. At first she resisted but Jeanne and her mom told her she had no other options. She agreed to the feeding tube placement. She was sent down to Jackson. After the placement of the tube she aspirated and wound up on a ventilator. The family thought they had lost her. In October she was released from the hospital on her tube feeds. This time was hard on both her and Jeanne. Jeanne was tending to the tube and setting up the feeds for Chris around the clock. Chris suffered from dehydration frequently since she was unable to keep anything down. She was in and out of hospitals up until December.

In December Jeanne took her to see a motility specialist at Cleveland Clinic. He promised to get her off all of the tubes and eating again. He determined she needed a gastrectomy. We consulted with the same surgeon who got her the pacemaker. In February 2008 the surgery was scheduled. Once they went in they determined that they could not perform the surgery. She had adhesions on her small bowel and it would have been too risky. Jeanne had to break the news to her. She was devastated. They took her off the feeding tube since she was not tolerating it well and got her on liquids and TPN again and sent her home. She seemed to be doing ok. We were even able to get her to eat mashed potatoes and thought we were on the road to recovery. Three days later she threw up the potatoes and we were back in the hospital.

At Cleveland Clinic her specialist told her that there was nothing else he could do for her. This is the same man that promised her the world. He basically told her that she would never eat again and she would be on TPN the rest of her life. Amazingly enough through all this she stayed positive and was not giving up.

They transferred her to a long term care hospital as they felt they could offer her nothing further. The doctor said that he didn’t know how to keep her out of the hospital. Jeanne contacted Chris’ transplant coordinator in an attempt to see if they would consider her for a mulivisceral transplant. This would have given her a transplanted digestive system. They would not even evaluate her. The doctors felt the measure was too drastic. The doctors kept telling her that all she needed was a feeding tube and she would eventually eat on her own.

Jeanne then got a call from the doctor treating her at Kindred. He told Jeanne that Chris was deteriorating and the TPN was the only thing keeping her alive. The malnutrition had atrophied her muscles to the point where she couldn’t walk without assistance. Chris was being given a choice. She could live out her days in a nursing home on TPN or go off the TPN and have 4 to 6 weeks of life. She chose to go off the TPN.

She has been off the IV nutrition for about two and a half weeks now. She is getting weaker and her organs are slowing down. Currently she is under hospice care and has around the clock nursing care. She gets around the clock pain medicine as well as IV Phenergan (the only thing that keeps her from throwing up). She sleeps about 18 to 20 hours a day, but she is comfortable. She is surrounded by family and will be until she passes. Her family is doing what they can for her and they are happy knowing that soon she will no longer be suffering.

Christine is an amazingly strong woman. She was not once complained about her condition and cares more about others then herself. She has given her family so much without even realizing it. She has truly been a blessing to all that have had the pleasure of knowing her.