This morning we left the house
bright and early (4:45am) to get to Children’s for our 6am check in time for
Seth’s craniotomy. We headed up to the
third floor and waited to be called back to pre-op.
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| Waiting to be called back. |
We were called back and started getting Seth
prepped for surgery. He was
undressed, weighed and his vitals were taken before we got him settled into his
johnnie. We waited quite a while for any of teams to come back and say hello.
We were scheduled for 7:30 surgery and didn’t see anyone until after
7. Initially Seth was scheduled for surgery
in a room including an MRI machine which requires extra equipment and more
precautionary measures so he was switched to a regular operating room which
pushed his start time back quite a bit.
Anesthesia and Dr. Goumnerova came back to see us and explained their
parts in the procedures. We signed the
consent forms and once the room was ready Seth went back with the anesthesia
team.
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| Walking with Dada before surgery. |
The surgery was scheduled for 4-5
hours so we grabbed our parent badges and some breakfast to bring back up to
the waiting room with us. At about 11:45
the liaison nurse came out to tell us they were finishing up and Dr. Goumnerova
should be out shortly to talk to us.
Dr. Goumnerova brought us into
the consult room and explained that the surgery went well and Seth did
great. He was not awake yet but they
didn’t run into any problems and they could see the tumor right when they
opened things up. She took out the
largest tumor located in the right ventricular system. Steve asked if they got the entire tumor and
she explained she took what she could see of the tumor without digging around
in other areas of the brain and believed she had gotten most if not all of the that
tumor. She also let us know they did a
“frozen” analysis of the tumor and it did come back as malignant, she even
looked at the sample herself. Even
though we knew this was the case from the meeting with her last week it was
still hard to hear and hit me hard. She
went on to tell us the tumor still didn’t present like the malignant tumors she
has seen and for lack of a better description it was watery rather than a solid
mass. She explained that by removing
this tumor they had cleared the way for spinal fluid flow so that was no longer
a concern. Seth did receive a blood
transfusion because his red blood cell count was a little low and she clarified
it was not because he had lost a lot of blood during surgery. We knew that was a possibility since they had
told us this beforehand. Steve asked if
it was worrisome that the tumors had grown in less than a months time and she
reassured us that these types of tumors will grow without treatment and the
amount of growth seen was not unexpected or alarming given the time between
scans. She said Seth would be moved
directly to the ICU for recovery so if we wanted to grab some lunch and then
head up there it should be a good amount of time to get him settled.
We got some soup and sat in the
family center for a while before heading up to the ICU about 1:30. He still hadn’t arrived so we waited in the
waiting room until they called us back.
While the bandage on his head is larger he seemed to be much less
irritated than he was after the biopsy previously done. He was uncomfortable but we got him situated
in a chair with me and he calmed down for a few hours. While I was holding him he seemed to be
getting very warm and red. I wasn’t sure
if it was because he had tons of blankets all around or he was running a
fever. But we had the nurse check him
and he was running a fever. He was given
Tylenol and he finally got to have something to eat which he clearly wanted
after taking a full 6oz. We got him back
up into his crib where he settled back down and took a little nap.
January 10, 2017
Tuesday morning I got to spend
some time with Sadie and take her to play group before heading back into the
hospital. She definitely knows something
is going on and is much more aware of when Steve and I or even Seth say we are
leaving. She always wants to come too but
overall she is doing well through the whole process. I checked in with Steve earlier in the
morning and he mentioned Dr. Goumnerova said Seth looked great and like nothing
had happened to him and he may even be able to go home later that day. Steve said my wife won’t go for that! I mean he did just have what I consider major
surgery let’s not rush home this time!! Before
I got back to the hospital they had come to do an X-ray of Seth’s central line
to see if it was placed correctly. This
confirmed it was actually in the correct spot which was good news but still
left the mystery of why it wouldn’t draw.
They mentioned they may do a TPA to try and clear the line (aka draino
for central lines). I headed back into
Children’s around 1 and was proud of myself for getting in by myself, I’m not
one for driving in the city … ever!!
Seth was still in the ICU and he looked red and swollen to me and just
uncomfortable. He was still running a
little bit of a fever but we were giving him Tylenol every 4 hours to try and
get it to come down. We got moved to a
regular room shortly after I arrived.
We’ve been on the 9th floor for our last few stays but this
time we were put in a single room which was so nice. We had lots of room to walk around with Seth,
both holding him, or in the carriage, and we didn’t have to worry about disturbing
a roommate or vice versa. I was planning
to stay over so Steve left to beat rush hour traffic and spend some time with
Sadie. Seth and I played and rocked and
even had a visit from Auntie Jenn. His
temperature was still up so I was diligent on making sure he was getting the
Tylenol every 4 hours and that his temperature was being checked regularly. He still hadn’t slept much since Monday so we
had some cuddling time where he slept, and we did some back and forth in the
carriage where he fell asleep for a few hours, and then another session of me
in the crib with him until he fell asleep.
All things considered he did very well overnight especially with still
not feeling himself and being very hot with the fever.
January 11, 2017
Wednesday morning Seth woke up
about 4:30 and was already looking much more like his smiley self. The last few days we had to really work to
get a smile out of him but today he’s finally flirting with the nurses a little
more.
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| Looking happier this morning. |
He had managed to once again pull
his central line dressing up so we had an early morning dressing change. Neurosurgery came in for rounds about 7 and
said he looked good and he needed an MRI today.
I asked if this was a sedated MRI or a fast one like he had last
time. They said sedated … ugh. I had just fed him and he only took 1.5
oz. Had I known I would have held off on
it!! At any rate he was NPO until
further notice. Later Chris from
neurosurgery came in and apologized for the miscommunication and he was going
to try to get the MRI set up for later today and also a blood draw because they
wanted to check things out because he was running a fever. He said we would not be going home today
which I was totally fine with because I didn’t want to go home with Seth still
having a fever. Later that morning Dr.
Goumnerova came to see us and said he looks great. I asked about the fever and she said she
wasn’t as concerned about it because it was common with surgeries occurring in
the ventricular system. She seemed a
little annoyed that the MRI didn’t happen yesterday. I asked if there were any results back yet of
course knowing there weren’t but I had to try anyway J. She Okayed the TPA for his central line so we
could see if that would clear it up.
Seth and I went for a walk down to the cafeteria to get some breakfast
and try to distract him from the fact he hadn’t eaten yet.
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| Breakfast with Mama |
For all these times he’s been made to fast
he’s done amazingly well! We returned to
our room and did a few laps around the floor until he fell asleep in the
carriage. We went back to the room so we
could rest quietly. When he woke up the
nurse came in to administer the TPA which had to rest in the line for a few
hours before they could try to draw from it.
He woke up about 11:30 and the nurse said she would get everything ready
to try the line again. This worked out
perfectly because they had mentioned they were doing chair massages today and
if I would like one. When I returned the nurse and clinical assistant were
working on drawing from the line. It was
still drawing very slowly. She did get
what she needed but said she would ask about having a line study done because
it’s not fair to him to have what is supposed to make having blood draws done
easier and he has to do basically baby yoga during it to get anything out. Seth took another short nap and the nurse
came in to give him IV fluids since he hasn’t been able to eat since early this
morning. Shortly afterwards the CA came
to take Seth down to MRI. I hung back to
catch up on some work since Steve had gotten here while Seth was napping. Chris from neurosurgery came in to confirm
again that we were not going home today and he had sent in the orders for the
line study. He’s not sure if it would
happen today but at least with this he wouldn’t have to fast. He assured me that fixing the line would not require surgery and would be much less invasive. Seth returned from his MRI and did great. He was babbling when he came back and the nurse mentioned he was scheduled for the line study at 8am tomorrow morning. Hopefully we can have a good nights rest and get to go home tomorrow after 24 hours of no fever.
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