Terran's journey's

Dear parent do not feel sad for my son he would not want you to feel sorry for him he never for one day felt sorry for himself he was a bright energetic wonderful child so full of life each day I strove to give him every want and desire he could want or need. When we first started this journey when terran was young i made many mistakes in learning how to care for terran i felt he was a blessed gift from god entrusted with his care i strove to do the very best I could for him at the time i was told may things "one i hate is he will be fine " and when after his first pullthru he was not fine i blamed mysself I questioned myself I did not know how to deal with medical professionals i was lost in a sea of unknowing.

But as he grew I grew I learned to become an effective advocate for him sometimes it meant screaming and yelling till i got heard but it was for terran the reason i got up in the morning the reason I existed. I was blessed to assemble a team of professionals that like me strove to make terrans life as full and happy as well as give him the medical things he needed. One of his most important doctors was first Dr. Thomas Weber

When Dr weber came into our lifes I was frustrated with terrans care I kept trying to find out what was wrong with terran who since his first pullthru had done badly in my eyes his doctors at the time kept telling me "he's fine" that it was me and my fear that kept him from being ok. but dr weber was the first doctor who listened and attempted to find out what was wrong with terran in doing tests on terran he found that a mistake had been made and that was the reason he had done poorly it was not in my head it was real. Dr weber validated my feelings he listened to us and tried. When we moved to Florida from Illnois when terran was oh about 2 and a half we were blessed to find Dr. Leon Reinstein ped gi here in St. Petersburg florida .

When we moved here from our small town of Quincy Illinois it was a big adjustment terran was first admitted to all childrens on his second xmas the doctor assigned to him that day was Dr. Leon Reinstein coming in at the crack of dawn i was not impressed number 1 with the hour of his arrival number two while his manner was sweet and kind i was scared terran was ill as he was often and i was out of place no dr weber to save us this time. But dr reinstein did his best he had the same views as I and when at the age of 3 terran underwent a fundoplication that went terribly wrong dr reinstein and terrans team at all childrens tried all they could to help. But terran who stuggled so long we found it was not as simple that he could not eat no my darling son had more wrong dr reinstein diagnosed him with chronic intestinal pseudo obstruction.

With those words our journey took a dramatic change no longer did we feel it was terran or I who failed but terrans own body failed him no he was not a bratty child or I a nervous mom who caused him not to be able to eat no his body was different and while we tried for another year to get terran to be able to have gtube feeds at least but at the age of 4 terran had to be placed on TPN (total parental nutrion) a cathader was placed in his chest and a new journey began one of infections and frequent admissions after this all childrens became our second home. Those days were loney and sad for terran and I. I Tried so hard to learn all i could to make terran better so he could be home i felt his quality of life was being affected to much by his disease at this time Lisa Morgan from childrens medical services came in to our lifes it was her job to help me naviagate the medical world we were thrust in to. Over the years she became a essental part to terrans medical team forever listening to one idea of mine after another as i ran the many things by her before dr reinstein so not to embarass myself.

For over two years after being placed on tpn terran was in and out of all childrens hosptial dr Reinstein always at his side as was I. Chistmas was usualy consisted with dr reinstien greeting us

at dawn terran eager to open his presents his daddy would arrive shortly afterwards since he stayed nearby at Ronald Mc donald house. Each step of terrans journey we had special people helping us along the way each special in his or her own unique job in taking care of terran mine was to be his mother to advocate and nutrure him. He struggled so long just to be like anyone else he tried so hard just to be terran. Each step taken was a step forward.

Terrans life for two years was a series of visits to mostly Dr Reinstein whose nurse Jessica was constently at his side terran loved jessy and i grew to depend on her more and more every year. SOme times terran would grow bored with talk of him and take my camera phone and take photos these pictures were treasures in his life.

Terran grew more complicated by the year at the age of 5 we made the decsion to look in to other options for terran who over the years had become dependant on TPN this was threating his life. While Dr Reinstein was against our decsion to take terran to be evaluated for transplant he stood by our side none the less.

terran growing bored during a clinc vist

takes pictures of Mom and Dr Reinstein with moms camera phone

Terrans 5th xmas in all children's

Terran and Dr. Reinstein and one of his favorite nurses Niki

Many years later i look at these pictures and remember this morning or that xmas morning I would think back then how much he wanted to be home but seemed this was his home this little room in all childrens had become terrans home. And while weird our Dr. Reinstein became a dear friend each xmas morning . While terran was safetly tucked in all childrens most of that year we struggled with the decsion to take terran to Miami to be evaluated for transplant. Our youngest grand child at the time Micheal was killed in a freak traffic accident His death made us keenly aware of how fraile terran's life had become. We did not come at the decsion lightly i researched countelss hours trying to understand all that I as his parent would have to know if we went down this route and in March of 2004 we took our son to Miami his daddy and I sat down with the team in Miami to discuss our options.

We took terran to miami in march of 2002 over the years i had become keenly aware that it was very important that I his mom not only be a good advocate for terran but be able to summerize his life for new doctors who came in to his life. A childs life whose complicated like terrans can generate tons of paper work frequent admissions line infections, tests, med's it was an undaunting task on me as his mom to keep it all straight in trying to fix this i came up with what would become known as "terrans bible" in his bible we kept a list of his meds, list of his doctors, summary of his sugeries, summary of tests and results separated by years. this was helpful when we met new doctors like the team in miami who could quickly skim vast amounts of informaiton to come to what they needed to come to the decsion to place terran on the unos list.

Terran was placed on the unos list in march of 2004 for a small bowel his liver at the time was not too bad so they felt all he needed was a small bowel. But in june doctors contacted us again and asked us to bring terran to maimi for further tests to determine if his stomach was ok they told me that often kids with pseudo the stomach was affected terrans stomach for years had been bad we often had to keep his tummy to gravity to keep him from constently vomiting. As a result of testing in miami terrans place on unos was changed and he was now to recieve a stomach pancrese and small intestine it was explained to me that while terrans pancrease was ok it was easier to transplant a whole graft and not try to separate it from the rest. While these doctors were new to us we had yet to learn to trust them we felt we had no choice.

Sept 11, 2002 Terran is called at 9:30 pm for transplant we get and forever more our lifes are changed once again. Two hurricanes threated terrans trip that night one coming in off tampa the other off miami our trip that night was heroic thanks to Dave Jochman our ever fearless friend who flew us down to miami so terran could get his transplant.

I did not see terran for almost 24 hours after he was taken from my arms he went in to transplant at 7:40 am i alone was at his side since there was no room in daves airplane his daddy had to drive down to be there. We snuggled that night now as i write this 4 years later i remember so much from that night the way he smelled how nervous he and I were here we are hundreds of miles from home starting a new chapter in his life with people and nurses and doctors we were now entrusting with his life we were both very scared that night all our familar doctors nurses and hospital were far away as we held each other that night ever so tightly every second till they took him from me at 7:30 am till then he was safe warm and comfortable in my arms when he left my arms i crumbled stumbling from the room not knowing if I would ever see his sweet smiling face again.

When I next saw terran i was horrified what had I let them do to my son he was hooked to all these wires tubes and worst of all his tummmy was open this huge incsion lined his tummy where skin should be closes his was wide open. I ran from the room at first site of him in my exhusation i cried so hard i was so alone so frightened for him but once i calmed down i knew he would need me to be strong so i went back holding myself tight i asked god for strength.

In the weeks following terrans transplant he got stronger and stronger and more sweet he stuggled with pain at first which made it difficult to move and then a severe line infection and a bout with siezures but 6 weeks after his transplant terran walked out of the hospital into the sun to move to transplant house during his stay he had made friends with some of the children on the floor of PTSU (pedi transplant surgical unit) two who jump to mind Christian Johnston and Jacob both boys around terrans age. then there was Ralphi an scrawny imp with an infectious smile who kept stealing terrans toys and Shelby and heidi who were babies at the time. Shelby died a short time later from complications her death made me scared for terran as i struggled to learn all i needed if i were to take care of terran properly. Terran was a bight spot in the floor he and his friends were ever in those nurses faces as they struggled to catch up with these naughty boys never where they were supposed to be each stuggling with their own unique set of health problems themselfs these boys and I with thier parents began to spin a life in this sea of tumoil. We met so many people that summer and the year that followed Terran who as usual never followed text books was being his usual self.

As i sit here many years later i wonder what would have i dont different. I hear all the kids who are still growing up that i knew as babys now grown in to wonderful preteens while my son lies in a cold grave surrounded by strangers. Why was my chosen why are we set to go through all we have been. I know they say god has a purpose god has a plan but i cant see the reason in my son not being the one who makes it the one who for once just was a normal kid. I would not change terran his hirschpsrungs made him who he was all he experienced made him in to the human being he became and me the mom i became. But for doctors and nurses to hide behind legal this or legal that i feel is wrong after all they are not working on inanimated objects they are taking care of human beings people we love have dreams for and when those dreams are shattered their lifes go one while we are left with broken promises and broken dreams.