Our Smiley Seth

Our Smiley Seth

Monday, April 3, 2017

Ommaya and G Tube

This morning we headed into Children's early to have Seth's ommaya reservoir placed which we have been waiting so long for. 
While we were on our way in Sadie was at the dentist and for the first time she sat all by herself in the chair and had her teeth cleaned!  She still tried to get extra toys for the treasure chest but I'm so happy she sat by herself.  Gramma may be on dentist duty from now on.
Fortunately we were able to coordinate the ommaya with general surgery and have his G tube placed under the same sedation.  It's nice when things work out like that.  He was taken back about 10:30 for his scheduled 11 am surgery.

Dr. Goumnerova went first placing the ommaya in his head.  We talked with her before surgery and went over the procedure which we had heard of and talked through before but she also mentioned that she was going to try to build up the area around where the stint is placed to try to reduce the possibility of the fluid collection that seems to come and go as Seth continues with his treatment.  Unfortunately, she was not able to do this.  She explained that a baby's skull is so thin it could be cut with just a pair of scissors and there wasn't enough to work with to build it up.  The stint may reduce the flow of fluid but we'll have to keep an eye on it.  I asked if this is something that will clear on its own as he grows and his skulls grows.  She said that is the hope but nothing is guaranteed.  When he is older we can explore other options and possible repairs if the fluid collection continues.  We will not be able to use the reservoir for his chemo this week but hopefully next week it will be ready for use after having some time to heal.
The G tube was then placed by general surgery.  We met with the surgeon beforehand and walked through the procedure.  He had another surgery right after so we wouldn't see him again today but they would check in on Seth when he's on the floor tomorrow during rounds. 
We finally got called back to see Seth around 2pm.  He was extremely cranky.  The bandage on his head is the same as the craniotomy but much smaller.  I'm anxious to see how noticeable it is once healed and the bandage comes off.  We're thinking since we're used to seeing him with the fluid collection it may look a little like that.  Even though we were looking forward to the G tube so he could have his face and arms back it wasn't easy seeing another "accessory" on my little guys torso.  I'm sure after a while it will become second nature like the central line.  After a few doses of morphine, some valium and some awesome nurses who bounced, rocked, and pushed him around the PACU in his stroller he seemed to calm down.  The nurses were also nice enough to let us go get some lunch/dinner since Seth's room wasn't going to be ready for hours on his regular floor.
After eating we headed to the car to get the bags and rock n play to go to the room with Seth.  We were able to get upstairs a little earlier than expected but just before being wheeled up Seth finally got to have something to eat.  Neurosurgery gave the green light right around 6:30pm.  That is one thing we weren't aware of.  Seth had to wait an additional 6 hours after surgery before he could eat anything.  When we arrived to 9NW our new home away from home all the nurses were excited to see Seth.  He was still pretty cranky so we did a lot of laps around the floor.  We even ventured over to 9 East which gave us a bigger loop to travel.  It was opening day at Fenway so I was waiting for traffic to die down before heading home.  Just as we were about to give Seth more to eat since we started him with just 3 ounces and he was doing well he got sick and lost what looked liked everything he had taken.  So he will be on a slow continuous feed through his G tube overnight and work his way up to bigger boluses like he was having previously and hopefully get back to eating by mouth again.
Before heading home I had to grab a few pictures of the little man because he is such a trooper and how can I resist taking pictures when he's so adorable?

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