Monday we headed into Children’s
for our pre op appointment. We thought
we were meeting with the surgeon to discuss the procedure but that was not the
case. Seth had all his vitals taken, we
met with anesthesia and signed consent and then signed off on some
administrative paper work. Afterwards we
headed over to the clinic to meet the oncologist we would be seeing regularly
on our clinical visits. Again I was
thankful we were in the clinic because the night before when I was going to
give Seth his sponge bath I noticed the dressing for his central line had come
completely up on one side!!! I called for Steve and taped it down with tegaderm
strips and needless to say poor Seth didn’t get his bath. We had his dressing changed again on this
visit to make sure it would stay down.
Tuesday we headed into Children’s
in order to meet with the neuro surgeon before Seth’s procedure later that
afternoon. We had heard she had a tough
personality and was very direct in her approach but she was also the best at
what she does. I was happy she took the
time to answer all of our questions and was very caring and thorough in her
responses. She explained she would just be taking enough of the tumor for
testing to get a definitive diagnosis and also to clear the path so spinal
fluid could flow easily like it should.
We killed some time before his surgery which
was scheduled at 2pm with a 12:30pm check in time by spending some time in the
family center, doing laps around the first floor, and grabbing a little
something to eat. We headed up to check
in and were taken back to the holding area shortly after. The surgeon, anesthesia, and OR nurses all
came out to say hello and answer any last minute questions before taking Seth
back for his surgery, it was booked for 3 hours. During his surgery we were told that on the
first floor they were providing gifts and stocking stuffers to all patients who
were receiving surgery or who were in patients that day. It was a great distraction while waiting for
Seth’s surgery to be completed. Board
games, stocking stuffers, and stuffed animals were all free and you could take
as many as you wanted and everyone received 15 tickets to get other gifts such
as baby dolls, legos, mega blocks, and so many other great things for their
children for Christmas. They even
provided a wrapping area!! We got some
really great things for both kids and truly appreciate the distraction and
generosity that we’ve seen at the hospital during the holiday season and what
has been a whirlwind for us.
Seth’s surgery took a little
longer than expected but after about 4 hours the surgeon came out and told us
Seth did great and was awake and screaming his head off. She explained that it took a little longer
than expected because they needed to do a CT scan to ensure they were entering with
the proper angle for the sample because it was done endoscopically. She said there were no issues and no
excessive bleeding or need for the drain she had mentioned was a possibility
earlier in the day. She said we would be
able to see him soon.
Seth was originally scheduled to
go to the ICU after his procedure but the liaison nurse came to get us and took
us back to the recovery room which meant he was doing so well he did not need
to go to the ICU and would be going to a regular room. We got to see Seth and he looked really good with
just a small bandage on his head but was very unsettled and upset. We were in recovery for quite some time
before our room was ready. We headed up
about 8 o’clock, he was still really unsettled and upset and we were doing
everything we could to try to calm him down.
The nurse gave him Tylenol and another medicine for pain. Steve stayed with us until about 11. He was still pretty fussy but I managed to
hoist myself up into that crib once again and cuddled with him, sang songs, and
rubbed his head until he finally fell asleep.
Shortly after I had climbed out of the crib and fallen asleep on the
pull out chair they provide one of his machines started beeping nonstop and of
course woke him up. The nurse came in
and plugged whatever it was back in and I hoisted myself back up there and
settled him down again. Thankfully he
did sleep until about 3am when he woke for a feeding and went to sleep again a
little while later until about 6am. I was
so happy that he got some rest because again I was nervous about the lack of a
swing and also the every 2 hour vital checks he required. That morning the surgeon came to see us and
talked to me about caring for his incision and that Seth was looking really
great and could possibly go home that day if we were comfortable with that and
if not the next day. He was still pretty
unsettled so I didn’t know what I wanted to do at that point. Seth needed to have a mini MRI to check the
vents in his brain after his surgery. Fortunately
this was a 1 minute test that didn’t require him being sedated.
Steve came back to the hospital a
little before lunch time and got Seth to sleep in the carriage with non-stop
pushing. He slept a good part of the day
and we finally made the decision to come home.
The oncology team came to see us before we were discharged and said they
were pushing to get the results sooner but with the holidays it would most
likely be 1 to 2 weeks before we would have any news. Of course when we got discharged it was once
again rush hour (funny how that always happens!) and it took us a while to get
home. When we got off the exit Seth got
sick in the car seat which I knew was a side effect of anesthesia but he hadn’t
been sick in the hospital so I was a little concerned. When
we got home I took him to his room to change and noticed he felt warm and took
his temperature he had a little bit of a fever.
We called the doctor to make sure everything was ok and that we didn’t
need to go back. Fortunately everything was fine. We’re glad to have this part of the journey
behind us and we’re looking forward to enjoying our first Christmas as a family
of four.
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