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I can see you out on the lawn
on a beautiful Irish spring day
Your castle in the background
around you, magical fairies at play
Butterflies flittering here and there,
and baby animals, yours alone
A bonnie lass is singing a melody,
it's your very favorite Irish song
Flowers around you, they smell sweet,
and a smile comes across your face
Your tresses of red shine brightly
as the sun in your hair does embrace
Your journey to get here's been a long one
but you have never given up the fight
You've been a warrior since the beginning
and many dragons you slay in the night
January, to us you are an awesome hero
bravest of the brave and a Princess as well
Your reward for your long uphill journey
is this magical garden, your own Fairy Tale
This page has been created to allow friends and family to stay informed concerning January Marie Bonar-Bridges. January, was born typical! At birth she had a bilirubin level of 11.8, high for a newborn, but mom was not alerted, and January was discharged. As the first week went by, January became more jaundice and was compared to a cheese curl, by day 10 seizures had begun, and January was admitted to CCHMC with a bilirubin of 54.5. At this time she was given little chance of survival. But, after two blood exchanges, survive is exactly what she did! Unfortunately, this bilirubin of 54.5 took its toll on her body and the brain, leaving her with severe disabilities. She has never developed past the stage she was on that 10th day of life, never grasping a toy, or even rolling over in bed. Over the last 15 years, her brain has begun to show signs of significant brain atrophy. She has a seizure disorder; severe dystonia; neurogenic bladder; respiratory issues requiring suctioning and breathing treatments...including oxygen at times; pseudo bowel obstruction; osteopenia; autonomic nervous disorder; immune issues and both developmental and mental delays resulting in her need for 24 hour a day care. In 2003, she was diagnosis with the pseudo bowel obstruction, as the intestines no longer push food down the intestinal tract, but push the food up and down and sometimes the food is not pushed at all. This inability to push the food down the intestines creates severe pain, as a result of these issues January became TPN dependent (TPN-is a form of IV nutrients), and required a triple lumien broviac (permanent C-line used to administer IV?’s). At this time it was decided that the medications currently given through the j-tube might not be absorbing so they are now given IV, as well. She currently receives tropic feeds via the j--tube and has the g-tube to drainage to prevent a backup in the stomach. She is also on a PCA pump of fentanyl to assist with pain management. This seems to make her the happiest when the g-tube is to drainage. January is a very happy child and enjoys cartoons, chick flicks, hearing people argue,
listening to her brothers play fiddle and
penny whistle, and listening to girl talk!
Her complete diagnosis all due to the Kernicterus
(hyperbilianemia) at birth --
RAD tracheal, bronchial mylacia, chronic aspiration
Cyst in the right parotid gland
Osteopenia
Ogilives Syndrome, pseudo bowel obstruction, reverse
peristosis of the small intestine, Chronic
constipation
Neurogenic bladder
Seizure Disorder
Severe Dystonia with tremors
Autonomic Nervous System Disorder - resulting in
irregular blood pressures, cold extremities at
times, tachycardia-bradycardia
Immune Defincy - Extremely low B-cells, low T-cells,
MRSA respiratory and Group G Strep positive
Developmentally newborn
January is the youngest of three. She was conceived to be born in Janaury as her dad had decided on her name, before she was even planned. She was and is her daddy's greatest pleasure. At day 10 she had hyperbilianemia, we were told she would never live. Now 15 years later she continues to fight and prove the doctors wrong. She is the most amazing person I know. She is my fairy princess, slaying the dragons that get in her way. Her smile will light up a room, and her cry will bring her older brothers to their knees. She has the red hair of the Irish, and the attitude to go with the hair. She is my hero and the hero of all those that meet her.
 
*HUGS* TOTAL!
give JANUARY more *HUGS*
Get hugs of your own
PADDY CRONIN'S REEL
Courtesy Of
Melodies Of Irish Music
Journal
Wednesday, June 10, 2009 9:55 PM CDT
As many of you know January has been having issues with her red lumen on her triple lumen central line. A line she requires to live.... after we noticed the line ballooning, we went into the hospital today ( took three days to work out the schedule for this to occur ), and was admitted to short stay. We got very lucky in that admitting did not put us on the short stay floor but instead up on a floor formular with January's complicated needs. Because January requires a minimum of two IV lines at all times, the IV team came in and insertd two lines.... then the Vascular nurse came in to repair January's line. It was decided that she would need a full body repair, so the nurse cut her central line in half, and went to repair the line.... but each time she would try to flush one of the lumens would leak around the repair... and the red lumen was clotted. She ordered TPA for the red lumen, and then the white lumen clotted and TPA had to be installed...the
lines continued to leak, It was decided that we would glue the line anyway, and we would wait four hours - if the line continued to leak we would install a dual lumen PIC line. During this four hour window we would also have TPA sitting in the line.... Meanwhile PIC team and the Vascular nurse after talking with her doctors decided a PIC line was needed. So we went to IR where a dual lumen PIC was installed -- just in time as one of her IV's had blown. At 7:30 this evening ( we had left home at 9:00 a.m. ) the central line was checked and there was no leaking -- the clots were able to be dissolved and as of right now it appears the central line will work again. Meanwhile we have a PIC to use for the next 48 hours while the central line repair has time to really dry. Sad thing is that we think the IV dantrolene might be what is causing these lines to clot... it is a drug not used outside of the hospital setting ( but we are giving every 6 hours at home ) and it is not compatible with Normal Saline or even D5. No one can tell us how to give it over an IV line, and no one knows if it can clot in the line when mixed with non=compatible drugs -- tomorrow I hope to call the drug manufacture to ask---- so for now I am exhausted and I'm going to bed!
Night all
Jayme
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