Our Smiley Seth

Our Smiley Seth

Monday, January 9, 2017

Tumor Resection

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. 
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. 
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. 
He didn’t sleep much Monday, just little amounts of time here and there.  Steve and I went down to grab dinner after Seth had another bottled and seemed to be sleeping peacefully.  We got back upstairs right around 7pm so I waited for the evening nurse to come in and introduce herself before heading home so I could spend some time with Sadie in the morning.

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.
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. 
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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