A
hospital for me is more than doctors, operating rooms, over priced food in the
cafeteria and the sirens or, depending where you are the helicopter landing on
the roof. I see the hospitals for its sleep rooms, developing friendly
relationships with the cafeteria staff because on a good day they may offer you
free lunch. Familiarizing yourself with the security officers is a must in
order for you to have access to most parts of the hospital e.g. (softer chairs
to nap on during the day or breaking the rules of how many visitors at one time
without being reprimanded.)
My son developed NEC a very common disease in pre-term
babies. Demba was induced into a coma by his doctors. NEC attacks the intestines
so an ileostomy was performed. Most people are familiar with an ostomy; an incision
is made in the stomach is made so one can excrete in a bag. Demba had two incisions
on each side of his stomach. I was trained by the hospital staff to care change
and clean the site and the bag. I recall seeing my son use the restroom through
is stomach and in a bag and it was all liquid, sometimes green but most time
yellow but if at any time there was a foul odor, it was not a good sign. Demba
resembled the Michelin man with tubes going in and out of him. The swelling
takes place when the blood is infected.
I lived inside The Children’s Hospital in Pittsburgh for
three month. My days included sleeping in the sleep rooms, or waiting room when
there was not enough rooms, freshening up in the restrooms before going to be
by Dembas side until visiting hours are over. I developed relationships with
other families and kept the chaplains number really close. The plan was for
Demba to get well enough to reconnect his bowels, heal and then come home.
The distance took a financial toll and emotional toll on
my marriage. I struggled to keep my emotions at bay. My family was a big
support system and came to visit me every week. We decided to have Demba transferred
to the children’s hospital in D.C. whilst awaiting the reconnection surgery, in
mid February 2007 Demba was finally transferred via ambulance. Upon arrival he
thrived and he was able to undergo surgery during the first week of April. He was released from the hospital in mid
April.
Dembas was six months old by the time he came home but he
only weighed five pounds, which may not seem much to most people but for us it
was a relief. I followed up with all of
his appointments from his team of doctors who performed the surgery to
his pediatrician. Demba had a hernia which his pediatrician bought to my attention
but the hospital staff asked me to wait until he was a year old.
Life was great, I was able to find work as an office
manager and my husband received a promotion a work, everything was going well
until one day when I picked Demba up from his babysitter… To be continued….
That "to be continued" seems ominous to me. I am nervous even waiting to know what happened next.
ReplyDeleteHopefully in next week's post, in addition to discussing what happened to Demba from after his babysitter, I would like to know what daily life is like for both him and you and your immediate family.
I also wonder: could the stress of dealing with a special needs child (with significant health issues) have affected your marriage? I wonder--how could it not? And what resources, if any, did the hospital or your son's doctors give to your family to help you combat compassion and caregiver fatigue?