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to read a pamplet on Hirschsprung's disease
click here to learn more about pseudo obstruction
Dear Parents
I bet your scared right now reading about terran and his story terran had a rare form of hirschsprungs caused by many
mistakes and underestimations his life was his we often said terran needed his own syndrome terrans syndrome where if it could
go wrong it did. Terran struggled from the moment he took his first breath till his last. BUt just because terran
was so unique this does not mean your child will suffer his fate. No presious parent most children born with hirschpsrungs
disease grow up have children and do well some stuggle due to many problems some have problems potty training some have unique
subset of problems like reflux or pseudo obstruction as terran had there are many things that can accompany hirshsprung's
disease or none at all This disease has a wide range of problems no two kids are the same in how hirschsprungs disese
affects them.
If there is one piece of advice i can give its to listen to your gut. When dealing with medical professionals research
learn and grow so your child will get the best medical care you can provide.
Terran loved meeting other children with his disease it made him not feel so alone. I too had the pleasure of meeting
others who shared terrans disease so if you too want to network with others there are some wonderful places on the net to
do so one is a unique support group started by myself and some other hirschprung's moms way back in 1997 its called Guardian
Society and today while i am no longer president it still follows the same guidelines as when i started it that no parent
no child should ever feel alone.
| Click on his picture to go to Guardian Society |
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| Terran the light of my life |
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
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| Terran with Grace Spinner (dr webers nurse) and Dr. 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.
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| terran and mickey mouse age 5 |
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.
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| Terran with CMS nurse Lisa Morgan age 4 |
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 |
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| takes pictures of Mom and Dr Reinstein with moms camera phone |
| Terran with nurse Anne |
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| Getting ready for a saline war |
| Terrans 5th xmas in all children's |
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| 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.
 to continue terran's journey click here | 
