Oh how the time flies- it has been 3 months since
Taygen had surgery and she has been seizure free since- Yay!!!!!!
The surgery was successful and Taygen has had an
amazing recovery so far. All her doctor's are absolutely amazed at her
progress and even mentioned that she could be a poster child for this type of
surgery.
The day of the surgery was a long day. We had
to be at the hospital at 6 am on December 20th. We had all her
pre-surgery appointments the day before so the day of was a little less hectic.
Jesse and I were allowed to go in the pre-op area with Taygen where she
remained asleep the whole time. There we met with the whole surgical
team- Surgeon, Surgeon's assistants, Anesthesiologist and lead Surgical Nurses.
When it was time to go into the OR they allowed me to carry Taygen in.
I was able to hold her as they put the mask on her to make her sleep
while they place the IV's and arterial monitoring lines (3 total IV’s, incase 1
fails and they need quick back-ups). I was able to give her a kiss before
I had to say goodbye and leave knowing I had absolutely no control over how the
next 8ish hours would go. I met back with Jesse and we met everyone else
who was there to support us in the surgical waiting room.
While she was in surgery we waited in a large
waiting room with my Parents, Christina, Angela, my Grandfather and my Aunt
Denise. We spent the time patiently waiting for updates- They would call
down to the OR every 90 minutes for updates and even the Surgeon came up one
time while they were doing a scan to update us on the surgery. When we
got word that the surgery was completed we went to the ICU where we would get
to see her.
We had expected them to shave her head for the
surgery and we were surprised that they only had to shave a thin line for the
incision which made a U shape that went from above her ear to the back of her
head and up and then to the forehead. We were told that her surgical team
was surprised that she woke up from the surgery kicking both legs since it is
common for hemispherectomy patients to suffer at least partial paralysis of the
arm and leg on the side of the body opposite of the disabled portion of the
brain. She is one tough kid!
Taygen spent 2 nights in the PICU, with only 1 of those nights on a ventilator, and was then
transferred to a regular room. She experienced no unexpected
complications and was released to go home after only 8 days inpatient. Before surgery we were told to prepare to
stay inpatient for 2-3 weeks and then possibly be transferred to an inpatient
rehabilitation hospital.
We lived at Children's Hospital Boston from
December 20-28th This meant that we spent Christmas in the Hospital. Although it wasn’t my first choice of places
to be over the Holidays, Christmas in the Hospital wasn’t too bad with thanks
to my Parents, Christina, Angela and John for being there with us sharing a 12
x 12 hospital room with delivered Pizza and burgers. Santa, who appeared to be a nurse, came
around sometime in the middle of the night on Christmas morning brought a bag
of goodies for Taygen. Also a few days before Christmas, one of Santa's elf's,
a.k.a Zoltan Mesko from the New England Patriots, visited the hospital, and
along with many others, donated toys and gifts for the kids. We really
couldn't have asked for better care throughout the whole experience. The
Doctors, Nurses and Staff at Children's Hospital Boston are incredible!
When we returned home Taygen restarted her therapy
through Early Intervention- This included physical therapy, occupational
therapy, vision therapy, speech therapy and she meets with a special needs
teacher. We increased her services so most of the therapists come
multiple times a week making her a very busy kid.
The type of seizures Taygen had caused her
development to stop and regress starting in April last year. Before surgery
Taygen was only able to remain in an unassisted sitting position for a very
limited amount of time. She refused being on her belly and never really
babbled or played with her voice. Since surgery Taygen can now remain
in seated position and enjoys rolling over to her belly. She is also
reaching and grabbing for toys and responds to people and looks and focuses on
people and objects. She also plays with her voice a lot more, still no constant
babbling but she is getting very close.
She is tolerating her Therapy very well and is
working on pushing up to sit, getting into crawling position, standing and
controlling her left hand, arm and leg. Although the surgery may have
caused more damage to her vision, (she already is very far-sighted and has
cortical visual impairment) She seems to be looking and focusing so much better
post-op.
Taygen's Post-op appointments have been great and
we no longer need to follow-up with Neurosurgery. Her Epilepsy doctor is
keeping her on her seizure medicines for at least 1year post surgery and then
we should be able to wean her off. We will be traveling to Boston again
in May and June when we will meet with her Ophthalmologist, Epilepsy-
neurologist, and she will have another developmental evaluation done.
Meanwhile we will be traveling back to Buffalo on
April 1st for what will hopefully be my 5 year remission anniversary from
Hodgkin’s Lymphoma! 2013 is looking to be a GREAT year!!
