^^Angel^^ Christina M. - Quilt Finished in 2003

Born: April 13, 1993 - Passed Away: November 24, 2003

Illness: Multiple Heart Defects (Atrial Septal Defect Ventricular Septal Defect), Pulmonary Hypertension, Post double lung Transplant, Renal Failure (31% kidney function)

Christina's Story

written by mom Lori

WOW, a lot of time has past since we first learned about MAKE A CHILD SMILE. As most of you, my Christina is now a special angel. We lost her on November 24, 2003, on what day would have been her daddy's and mine 13th wedding anniversary. I was able to imagine with a smile on my face, Christina running into her daddy's arms telling him the "Momma sent a special anniversary gift, and that it was her" She was and always will be a daddy's girl.

As you know Christina received a double lung transplant on January 29, 2001. And that her start with her new lungs was not a smooth ride. But she did overcome so many obstacles that even the doctors were not sure she would, and always with a smile.

Christina was soon diagnosed with renal failure with a kidney function of only 31%. Christina returned home after spending 7 months in St. Louis as outpatient at St. Louis Children's Hospital. And soon she was back in school and being just a "normal" child. Although we made almost monthly trips back and forth to St Louis. She loved life and had some very special "Best Friends".

If any one knew Christina they would know how much she loved life and lived it with everything she had in her no matter what was going on.

Throughout 2001 she never had any rejections episodes with her new lungs, we were so thankful, we had seen so many children go through problems like that. However, in 2002 she was diagnosed with Bronchitis Obliterates or chronic rejection. With this there are no cures. We changed her medications in hopes to slow down the process. The only real treatment/cure for this would be another lung transplant. Christina was not a candidate for this because of her kidney function. So we just prayed that God would come by. This too did not slow her down. She knew what it all meant, she was very bright, and we always shared what was going on within her body. Still she was full of life and enjoyed so many things.

I guess from here, I am going to jump to 2003 and all that happened that year. Christina started having problems with vomiting and was scanned and everything else one could think of to find the cause of this, with no answers. She had many hospitalization that year, in fact we only spent 56 days home total. In the summer of 2003, shortly after being released from Children's, she was readmitted in to the hospital here for vomiting again, and she was having "coffee ground" looking vomit, which indicated old blood. This was not the first time for this. Just a day before she was going to be discharged, she started acting funny that evening, and I question some of the actions, like little body jerking's. The doctor came in and checked her over and thought maybe it was a reaction to a medication, and stopped it. Then she started talking "out of her head" and was having difficulty with breathing. Before we knew it her little belly was very bloated and getting larger. Our doctor was called in and he called for one of the surgeons to come in and look at her and he felt that she needed to have surgery, not sure what was going on, and it was thought that she should be sent to St Louis for evaluation. All the while her belly was growing and she was not breathing well at all even with a face mask. In what seemed like just minutes she was turning purple before our eyes, her little feet, legs and hand. She was immediately sent to ICU and to CT, mind you she had several CTs/MRIs/PETs/x-rays, all never showing anything wrong. Well this time it did show something wrong, several things in fact. It was decided that she did not have time to wait for St Louis to fly into Joplin when the fog cleared, the surgeon was called back immediately and within 30 minutes top she was in the OR. During that time, they lost her three times, and when it was done she had lost 3 feet of her small intestines and it was not sure if she was going to make it. Her blood pressure was dangerously low. But prayer was going up on her behalf and she was finally stable enough to fly to Children's.

Christina being Christina, was trying to wake up during the flight, all the time being on a vent, and then once she was awake and aware of where she was and that she was indeed in the PICU, on the ventilator, she was mad at me for all that was going on, mainly because she thought I did not tell her what was going on. But once I assured her I did and that she was very sick and was fine with it, as long as she was able to get the vent out. The main reason for the vent was just to give her lungs a little support, they were not damaged during all of this, Thank God. So after a month of being in the hospital and learning to deal with a new issue, an ileostomy, she was released to come home.

When we got home she was still not the happiest child. So we tried to make it better and had a house full of people and friends there waiting for her with little gifts, etc. She enjoyed it somewhat, but for all she had been through, it made her realize just how sick she was. So for about a 2 month period, Christina talked very little and would do very little. It was in July when we were at our doctor her at home, he felt that maybe she should be started on a low rate of oxygen and maybe some morphine too, as she was complaining of chest pains, this was from the fact that her lungs were failing more and more, and the air was getting trapped and not able to be release and the extra pressure on the chest wall would cause some moderate pain. Christina was also started on home IV's and on TPN (a nutrient given via IV) (all of that was started in St Louis).

Also in July, our home doctor thought it was time to start Hospice, this was something I did not want to hear. So that night the Lord allowed the opportunity for me to talk with Christina about what was going on with her body and what was going to happen if God did not heal her. I did promise her that just the first place she was, when she was born, was in my arms, and that too would be the last place she would be before she went to Jesus. She had such an amazing understanding. She wanted to know if there was pain, and what it would be like to see God. Then she asked me if she would be able to see her daddy with her eyes. I told her I was not sure, but I thought she would be able too, although Momma would not be able too. I also asked her if I was going to get my old Christina back or if she was going to stay quiet all the time. She promised me that I would have "Old Christina" back soon, and I did within the next week. She told me the hardest thing for her right then was not knowing that she may go to Heaven but she would miss our late night talks. I told her I would miss them too, but that I would always talk with her.

So soon we developed a new routine in our home, we started hospice, but that only lasted a short time, because they did not want to do the TPN, and I was not willing to stop it.. That was going to be a choice Christina made if she wanted to. So mom became her personal nurse, and she even learned to do some of her own IV medications. She was so bright. We did have an LPN come in daily to basically play with Christina, because she could not do the morphine or any of her IV meds through a central line, but it was nice for her to have someone to play with while I did the things that needed to be done.

We were still making trips back and forth to St Louis monthly, and her last trip there was for a little over a month long. It was just to be a follow up appointment but ended to be so much more. Christina was once again admitted and was started on C-Pap, this is a machine that helps keep the airways opened when one slept. The first time it was placed on her was the first time I heard her ever really complain and say things were so unfair, but after getting a full night sleep and sleeping well, she did not complain any longer. It was during that visit I questioned her pulmonologist about what the long term thoughts were for my baby girl. She told me that Christina was not going to live much longer. She did not know if she would make it to the end of the year (our home doctor had told me that if she made to Halloween he would be surprised but if she made it to Christmas it would be a miracle.) Christina made it to Halloween, she was able to go around the hospital for a little while with several other children trick or treating (let me say by now she was in a wheel chair, her very own special to order chair, she loved it, it was comfy and fitted her perfectly).

We came home the first of November and she was a direct admit into St John's for the weekend. Christina at first did not want to come home, she was fearful something would happen to her on the way home, but once convincing her she was fine and that we would put her into St John's right away for a couple days for her to see she was doing "better", so she was fine with that.

So, we finally were home again for about 2 weeks, and as scheduled she went into the hospital to receive her special IV treatment that she got every month, and some lab work we came home as normal. I did find out her kidneys were almost not functioning at all. And that her levels were at a toxic number, yet nothing we could do about it. So home we were on a Thursday evening, and she was getting Christmas cards from people everywhere.

I need to stop here, Christina wanted to celebrate Christmas so we had set a date that we would do just that, November 24th. She went and picked out special presents for her brothers and a birthday gift for her older brother Josiah, for his birthday is on Christmas. So that evening when home it was Christina and I looking at all of the cards that had arrived that day for her, so many that they were in a box on the porch. We we laughing at some of the hand made ones from some of the school kids and had such a fun time together.

The next morning she started running a temperature and I called her doctor and he had us bring her in to his office right away. Once there, I knew in my heart what was happening, so when I questioned him he told me he was admitting her and canceling his trip for the weekend. Christina's kidney has stopped working totally, and it was not just a matter of time. We had made several phone calls, and within a few hours people were coming to the hospital, we decorated her room with a tree and so much more, the hospital even gave us an extra room where friends and family could stay and where all the "junk food" was.

On Saturday, during one of the moments she was awake, she was looking out the window and told me to look and saying "Isn't it beautiful?", I remember telling her I was not seeing anything and with a slap on my arm she pointed to the spot she was seeing something, so I quickly agreed with her and she was happy and went to sleep. So that was our last Saturday, she spent some time awake and talking with those around her and others just holding my hand and sleeping. During the night, or more like 5ish on Sunday morning Christina woke up and was felt like she was having trouble breathing and it hurt some to breath. The doctor ordered something for her and she soon relaxed and went to sleep. That was the last time she would be awake.

Like our Christina, when we thought she was finished fighting she would fight harder, and so it was throughout Sunday. Come that evening, as the sun was setting, I remember telling her that she could not leave Momma during the night. She heard me, and that night one of the nurses brought in a second bed, we rearranged the room and had the beds laying side by side, and she slept the night in my arms. On Monday morning, with only a couple very special people in the room (they were there when she was born too), Christina opened her eyes and looked at an unseen person and waved, I told her it was okay, and within a few minutes she was in the arms of her daddy and in the presence of her Saviour.

Although she left me in such peace, there was within me a pulling away, such as never felt before. I guess the best way to describe it was like a part of me was physically leaving.

Life for us has changed a lot. But we are still going forward. Christina lives within each of us and she could never be forgotten.

Josiah is anxious to get his driving permit and a job. Stephan is a typical kid, though he has some physical issues he has to deal with, those including asthma, allergies, vocal cord dysfunction, and now possible Celiac disease, we hope to know some more on that within a week or so.

I want to thank all of you for all the support you have shown my Christina,

GOD BLESS,

A special Angel's mom.