Maisie
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MY
DAUGHTER MAISIE WAS BORN (11-25-96) A HEALTHY FULL-TERM BABY, BUT AFTER ABOUT 4
WEEKS OLD SHE HAD THIS STRANGE STRIDER NOISE. SO, WE TOOK HER TO THE DOCTORS AND
THAT'S WHERE OUR LIVES WERE TURN UP SIDE DOWN. WE WERE SENT FROM ONE HOSPITAL TO
THE NEXT. SHE WAS SCOPED AND DIAGNOSED WITH LARYANGO TRACHEA MALACIA AND WE WERE
TOLD SHE WOULD OUT GROW IT.
AFTER MONTHS OF RESPIRATORY DISTRESS AND OXYGEN WE WERE RUSHED TO THE HOSPITAL
AGAIN AND PLACED ON A VENTILATOR WHERE WE BEGAN OUR LIFE IN PICU AT HURLEY
HOSPITAL. THIS IS WHERE WE ENDED UP STAYING FOR A FEW MONTHS. SHE THEN WAS
SCOPED AGAIN. WE WERE TOLD SHE HAD SEVERE G.E.- RELUX. WHICH LATER DURING
OUR STAY AT HURLEY WE ENDED UP IN SURGERY HAVING A TUBE PUT IN HER PRECIOUS
LITTLE STOMACH TO HELP HER EAT, THIS WAS CALLED A J-TUBE G-TUBE WHERE THEY PLACE
IT INTO THE JEJUNUM SO IT BY PASSES THE STOMACH TO STOP HER FROM ASPIRATION.
A MONTH WENT BY, MAISIE WAS NOT DOING WELL AT ALL. HER STRIDER WAS GETTING WORSE
BY THE DAY. THE DOCTORS DECIDED TO SCOPE HER AGAIN, THIS TIME TO FIND SOME
STRANGE REDNESS THAT LOOKED LIKE ESOPHOGIHTIS FROM ASPIRATION. BY THIS POINT IN
TIME SHE HAS BEEN ON NUMEROUS MEDS TO HELP HER STRIDER; STEROIDS, BREATHING
TREATMENTS, AND OXYGEN. BUT NOTHING SEEMS TO BE WORKING. MAISE IS NOW CONSIDERED
FAILURE TO THRIVE AND SOMETHING ELSE HAS TO BE DONE. SHE WAS THEN TAKEN TO
SURGERY TO HAVE A STOMACH RAP CALLED FUNDOPLACATION. WHICH HELPED AND WE WERE
FINALLY SENT HOME. NO STEROID AND NO OXYGEN? THEN THE HORRIFIC HAPPENED,
RESPIRATORY WENT FOR THE WORST WE FOUND OURSELVES BACK AT HURLEY WHERE SHE WAS
PLACED IN A HELIOX TENT TO CARRY THE OXYGEN TO HER LUNGS.
AT THIS POINT WE WERE VERY CONFUSED AND THE DOCTORS WERE VERY CONCERNED ABOUT
MAISIE. THAT'S WHEN IT HIT US THE HARDEST, SHE IS IN TROUBLE AND THEY DON'T KNOW
WHAT'S WRONG WITH OUR SWEET BABY.
SHE WAS 9 MONTHS OLD NOW AND SHE WAS FALLING BEHIND FROM ALL THE TRAUMA. DOCTORS
AT HURLEY DECIDED AT THIS POINT THEY NEED TO TRANSPORT HER TO UNIVERSITY OF
MICHIGAN WHERE SHE WAS SEEN BY A DR. KOOPEMAN AN E.N.T WHO SCOPED MAISIE SOON
AFTER WE GOT THERE. HE CAME OUT OF THE SURGERY ROOM AND TOLD US THAT MASIE HAD A
MASS IN HER AIRWAY AND IT WAS CALLED A HEMANGIOMA. SHE NEEDED A TRACHEOSTOMY
RIGHT AWAY OR SHE WOULD NOT LIVE. OF COURSE AT THIS TIME I WAS STRESSED OUT AND
FALLING APART. THIS WAS NOT WHAT I WANTED TO HERE. A TRACHEOSTOMY I CAN'T TAKE
CARE OF HER WITH A TRACH. BUT IT WAS FOR HER OWN GOOD. AFTER A WEEK
PREPARATION ON TRACH CARE AND THE HELP OF THE WONDERFUL NURSES THAT WORKED
WITH DOCTOR KOOPMAN. MAISIE IS A HOLE NEW CHILD SMILING PLAYING AND READY TO GO
ON WITH LIFE.
THIS WAS THE BEGINNING OF OUR LIFE AS A NORMAL FAMILY. TODAY MAISIE IS 5 YRS.
OLD AND PERFECT IN EVERY WAY. SHE HAS NO G-TUBE AND NO OTHER HEALTH PROBLEMS.
MAISIE WILL BE ATTENDING KINDERGARTEN IN THE FALL OF 2002. THE HENMANGIOMA IS
STILL THERE, BUT IT HAS DECREASED IN SIZE BY 50% AND WE JUST TAKE IT DAY BY DAY.
WE ARE HAPPY WITH HER JUST THE WAY SHE IS.
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Update - March 14th 2002 Maisie had a scope done at University of Michigan Hospital where they found that her hemangioma is gone. Finally five long years of waiting and its gone. The only problem is that Maisie has severe subglottic stenosis and needs surgery. This procedure is called laryngotracheal reconstruction surgery. This is where they make an incision across the neck and a long cut is made into the front of the airway. A small piece of cartilage is taken from the rib and placed in the opening and sewn in place. This is called a rib graft. The stent is built in which is similar to a trach but its in a T shape. Small drain tubes are placed in the incision is closed. That's where she then will begin her recovery in PICU for 2 weeks. After 6-8 weeks back into surgery where the doctor will remove the stent and place a regular trach back in. She then will start the decannulation process to remove the trach for good. We are very scared for Maisie, but this could be the end of a long journey of medical problems. I will keep you posted on her progress after the surgery. Thanks to all of my family and friends for their support.
PLEASE FEEL FREE TO EMAIL JESSICA (MOM) AT ANYTIME SHENSLEYJ@AOL.COM
