Logan was born at 28
weeks gestation weighing only one pound 11 ounces and 13 inches long. The day
before he was born they suspected he had a chromosome syndrome called Trisomy
13 which is considered incompatible with life. I did not have any amino fluid
left and he only had approximately 4 days to survive inside of me. They wanted
to test his chromosomes through the umbilical cord; they were not going to give
me a major surgery for a child that would not survive. However, the next morning
through an ultrasound they determined that he did not have enough time left to
test his chromosomes and get the results back. The Dr's told me I could let a
perfectly healthy baby die or have a major operating for a child that would not
survive So I had an emergency C-section and I prayed so hard I didn't even
realize he was born until my mom went over to see him and he survived. As they
were wheeling him off to the Neonatal Intensive Care Unit (NICU) I asked to see
him. I said "Happy Birthday Baby" and he instantly turned his head to
find my voice. I took one look at him and watched them wheel him away while he
was turning towards me my heart was no longer my own.
I was told the day I
was discharged that the initial test came back that Logan did not have Trisomy
13. But because he had some of the birth defects that came along with trisomy
13 I researched it on the internet. All I could think of was thank God he did
not have this syndrome because most children with the diagnosis do not survive
past a month and it is 90-97% fatal within the 1st year. However, a week later
they called me on the phone and told me the lab made a mistake and he did
indeed have trisomy 13 and we should discuss removing Logan from the
respirator. I would not allow that to happen he was fighting with everything in
him to live and I could not take his life away and let him pass away or let
"nature take its course". I refused to listen to the negative
predictions for Logan's life they told me he would be vegetative and non-responsive.
I demanded they treat him like every other baby in that NICU. For 2 months I
sat beside his incubator for 6-8 hours a day and doing everything I could to be
his mom and let him know that I loved him. I would just sit with my hand on his
head, back, and or hand. I wanted him to know that not all touch was bad touch.
I would walk into the NICU and stand beside his incubator and he would
instantly know I was there. I had taped myself reading stories to him so he
could hear me when I wasn't there. I had recorded Irish fight songs for him to
listen to as well. I was told I was torturing him, I was being cruel, I was
selfish and I was causing him to suffer by keeping him alive.
Logan was born without
a rectal opening so he had a surgery to give him a colostomy or stoma. Logan
became septic a 10 days old and he was so sick i didn't think he was going to
pull through but he did. Logan suffered several set back in the neonatal
intensive care unit (NICU), He took 7 weeks to get off the respirator, he was
diagnosed with GERD and had a nissen fundoplication surgery to prevent the
reflux and they also surgically inserted a mickey button which is a Gastrostomy
Tube (G-Tube) for additional nutrition and he was being fed with a haberman
nipple due to Logan's cleft of the soft palate. But he was silently aspirating
with bottle feeds and this caused pneumonia many times. Logan would progress
from the respirator to a cpap or Continuous positive airway pressure and then
to a nasal cannula for his need for oxygen but then he would regress and go
back to the cpap or respirator. premature babies require a drug called caffeine
to stimulate the brain to remember to breath. They babies only require this up
until a certain gestational age however Logan required it much longer. They would
take the caffeine away Logan would begin having serious apneas. I had to beg
the Drs and nurse practitioners to continue giving him the drug and then he
would slow down on the apneas. Finally after 129 days in the NICU Logan was
sent home but I found out later that they sent him home to pass away. Logan
started receiving home nursing care that continues to this day.
Logan began receiving
treatment at Hershey Medical Center within 8 days of being released from the
NICU Logan coded and was sent to Hershey Medical Center they completely changed
Logan's care and he began to improve. However he was within a day of getting a
tracheostomy but he pulled through and began to breathe on his own without the
need of a cpap. Logan was having seizures from being so sick and within 10 days
at Hershey and their changes to his care he stopped having the seizures. Logan
had his colostomy revised many times at Hershey and eventually he no longer
needed to wear oxygen. But at 2 years old Logan developed Respiratory syncytial
virus or RSV and was very sick and his health became serious as a result of the
infection. Two weeks later Logan had his cleft palate repaired in spite of the
infection. There were so many medical issues his first year of life they still
continue just not at the pace of the 1st year. So Logan survived living out of
the NICU and reached his 1st birthday and now there are not predictions of life
expectancy or milestones.
From the time he came
home from the hospital he received physical occupational and speech therapy on
going until he was 3 years old. Logan was not able to sit up by himself or do
anything for himself. Physical therapy thought he required a stander which was
a wood device that strapped him in in all areas of his body to put Logan into
an upright position which was supposed to encourage Logan to want to be up
right. Logan couldn't crawl for at least 6 years his means of getting from one
place to another was to roll. Logan would not make any vocal sounds except for
a duck noise which he continues to do to this day. Logan now says a few words
which is momma, baby, bye bye and when he is angry with me he calls me Ia which
is his way of calling me Tina due to Logan's profound hearing loss. At 4 years
old Logan got his first wheelchair. It was amazing Logan figured out within 20 minutes
Logan figured out how to move the wheelchair to go where he wanted to go. It
was amazing to see him develop some independence and to have him sit up right.
At 3 years old Logan got his first pair of glasses and he looked so cut in them
but that is when the vision problem began.
At approximately 3 or
4 years had a pull through surgery where they reversed his colostomy. For years
Logan’s skin on his bottom was very sensitive and had many many diaper rashes
that were so severe it looked like there were burns. After the surgery we had
to dilate Logan's rectum with a metal rod to keep his rectum from closing shut
again. I refused to participate in that procedure I looked cruel and I couldn't
stand to hear his crying and wailing during the dilation this procedure was
repeated for over a year until the muscle was would not close. Due to the birth
defect of the anal muscle not working correctly it does not contract Logan has
chronic bouts of diarrhea which is an ongoing battle that prevents Logan from
gaining weight which is called failure to thrive. At 6 years old Logan's nissen
fundoplication came undone and they had to operate to repair it. The surgery
along with the pull through surgeries lasted at least 5 hours.
Within the next few
years Logan slowly started developing behavioral problems such and self-injury
by hitting his head with his hands. Logan was not able to talk to express his
frustration. By the time he was 6 years old the behavioral problems developed
to the point of requiring medical intervention. At 6 years old Logan would only
sleep for 3 hours a day and the rest of the hours he was awake he would scream,
cry uncontrollably and hit his head. I had nurses were leaving in tears
refusing to come back to care for Logan. The only thing that soothed Logan was
a taped episode of the Ladies of Ireland singing so that was played over and
over again. It was at that point in time I had to make a major decision and it
weighed heavily on me for about 6 weeks coming to terms with the major change
that would occur in our lives. I had to quit my great job which I was very
successful at in order to take care of Logan and get him the proper medical
care to treat the behavioral problems.
Logan started
receiving wrap around services for his behaviors he had a Behavior Specialist
Consultant or BSC at home and a Therapeutic Support Staff or TSS at school. The
BSC worked very closely with me and Logan and discussed the possibility that
Logan might be autistic. I resisted that diagnosis or testing Logan for autism.
For some reason that was one label that scared me and and I really did not want
to deal with. But after talking with me for many weeks I finally agreed to have
him tested. Unfortunately he was diagnosed as severely autistic. With the
autism Logan has the common trait of attempting to wonder off. He spends almost
his entire time home attempting to leave our home. Logan also attempts to leave
his classroom consistently as well. 2 years ago Logan did leave my home while I
was sleeping and was injured with him scooting and crawling, Logan was not able
to re-enter the home due to his limited ability to use his hands.
Logan was also fitted
for a safety helmet to prevent him from actually injuring his head from his self-injury
behavior. Logan was treated by a Dr for his sleep disorder with medication but
that didn't solve any of his behaviors while he was awake and he would only
sleep maybe 5 hours a day with the medication. Most of the time I could not
walk out of Logan's sight, if I even turned my back to leave the room Logan
would have a major melt down with hitting screaming and crying. After being
treated by several Dr's we finally were referred to the Neurology department at
Hershey Medical Center. The neurologist that began treated Logan put him on
anti-depressant medication, an anti-psychotic medication and a medication for
anxiety. This started the beginning of Logan's recovery from his mental
illness. Logan still has episodes of self-injury and melt downs but they are
few and far between. Logan's neurologist continues to work closely with us.
Logan's chromosome syndrome and the autism cannot be predicted on future
milestones and or predictions because no two children or people are alike.
Approximately 3 to 4
years ago Logan would not cooperate during hearing testing and after several
tries and a new medical center, Geisinger Medical Center they decided to do an
Auditory Brainstem Response (ABR) Test for his hearing to get an accurate
hearing test for Logan. It was determined that he had moderate hearing loss and
was set up with hearing aids. We had a 2nd opinion done for a cochlear implant
they determined the 1st ABR test was not done correctly or in complete form so
they performed a 2nd ABR test that was accurate and it was determined that
Logan has profound hearing loss in both ears, he is almost deaf. This was
devastating news to receive that my child was almost deaf.
Just recently Logan
developed a large cataract in his left eye overnight. Logan was scheduled for
surgery to have the cataract removed however after sedating Logan they
performed a scan of his eye and found a large growth at the back of his eye.
They could not remove the cataract on his eye in the event that it should be
cancer because that could spread the cancer. After extensive consultations with
several specialists it was determined that it was most likely a complete
retinal detachment. A follow up MRI of his eye and further consolation it was
determined that it is a complete retinal detachment and that means Logan is
legally blind in his right eye because he retina cannot be repaired and Logan
has very poor vision in his right eye.
Currently Logan has the
following disabilities, he is non-verbal, and non-ambulatory he requires 24
hour care and is totally dependent on other for his total care. Logan has a
Gastrostomy Tube and receives night tube feedings, failure to thrive, chronic
bouts of diarrhea; he is almost deaf, blind in his left eye and very poor
vision in his right eye, severely autistic, mental health issues, neurological
issues, trisomy 13, and many other issues.
