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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, October 22, 2008 2:21 PM CDT
Hi! Today is a great day... January appears to be doing very well after coming off of her antibiotics. ( of course the happy January might be a result of the increase in her PCA pain pump....hehe )
We had a Waverly GLen Ceiling lift system installed in her room, and I am just now getting the hang of using the contraption. It looks easy, and it actually is, but it is so big. She actually loves to just swing in the sling, so today before I placed her in the wheelchair, I kept the sling over the bed and allowed her to swing - she smiled from ear to ear... I think seeing her smile as big as she did was so worth it! Who knows getting the lift, might make my back ache less - we will see.
January has her room all decorated for Halloween - it looks great, but I am so excited to start on her Christmas decorations. I though I would be able to wait until after thanksgiving, but --- her doctor came by Monday night to give her flu shot and said he was disappointed that we did not have her Christmas village up yet ( it takes up two walls ). I just laughed and told him it would be soon - then I went to Kohl's and well they have theirs up, so ...... I am thinking November 1st as the day to take down Halloween and maybe start on the Christmas.............
January is in a great mood in her chair, watching Johnny Test. She loves this silly cartoon....... thank heavens I have books to read, else I would go crazy ( or for those that know me - crazier )
love ya--
Don't forget to Vote! Doesn't matter who you vote for as long as you do ---
Many of you have asked what a normal day for me is like so - here it goes. By the way I get 50 days of nursing per year! And I private pay for any additional help that I receive ---
January has a triple lumin broviac ( three lines that are considered Central lines - go directly into the heart ). These lines are A,B and C.
6 a.m. Give IV ativan 8 mg, through line A
6 a.m. Start IV clindamycin antibiotic through line B
Check line C which is infusing TPN and Fentanyl
6:15 Give IV Zofran 6 mg, line A
7 a.m. Give IV Cogentin 7.5 mg, line A
7 a.m. Give IV Protonix 80 mg, line B
Check vitals, empty foley catheter - remove foley
8 a.m. Give IV Benadryl 25 mg, line B
8:30 a.m. Give IV Phenabarbitol 130 mg, line B
9 a.m. Give IV Ativan 4 mg, line A
Do breathing treatements ( Albuteriol, Pulmicort, Mucomyst, Tobramycin - takes 1 1/2 hours )
Give Nystatin and Zyrtec g-tube medications
Straight Cath
11 a.m. Give IV Cogentin, line A
12 p.m. Give IV Ativan 8 mg, line A
1 p.m. Give IV Benadryl, line B
2 p.m. Give IV Zofran, line A
Change TPN lines, check Fentanyl doses - these go 24 hours per day.
Straight Cath
Change any patches ( Clonodin and Fentanyl as needed )
DO a complete line change every three days... Do a dressing change every week/
3p.m. Give IV Ativan, 4 mg, line a
Repeat stomach medications
Check Vitals
3:30 p.m. Give IV Cogentin
BREAK UNTIL 6 p.m.
6 p.m. Give IV ativan 8 mg, through line A
Check line C which is infusing TPN and Fentanyl
Straight Cath
7 p.m. Give IV Cogentin 7.5 mg, line A
7 p.m. Give IV Protonix 80 mg, line B
Check vitals, empty foley catheter - remove foley
8 p.m. Give IV Benadryl 25 mg, line B
8:30 p.m. Give IV Phenabarbitol 130 mg, line B
9 p.m. Give IV Ativan 4 mg, line A
Do breathing treatements ( Albuteriol, Pulmicort, Mucomyst, Tobramycin - takes 1 1/2 hours )
Give Nystatin and Zyrtec g-tube medications
Insert foley for nighttime
10 p.m. Give IV Zofran, line A
10:30 p.m. Give IV Thorazine line A
12 a.m. Give IV Ativan
Read Journal History
Hospital Information: Patient Room: A 6 North, Cincinnati Childrens Hospital
3333 Burnett Avenue
Cincinnati Ohio
513 636 4200 patient information
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