Cerebral Palsy, Food, G-Tube, Health, Our Son, Parenthood, Toronto

Surgery Day


We talked about the surgery with Sebastian in bits about a week before the surgery. Time is a difficult concept so we wanted to wait until we were close to surgery day, also in case anything happened that pushed the date forward. We talked about how he would have a tube in his tummy that would help him eat and drink more so he could grow big and strong and have more energy to do things. We talked about how it would hurt at first and then it would feel better. We talked about him staying in the hospital with his Papa-Daddy and Mama would come visit sometimes with Tallula and sometimes without because Grandma and Papa were also coming to visit. I wanted Sebastian to have a good understanding or at least a basic understanding of what his body would look like and feel like when he woke up. In order to do this he would need to see the tube, etc. I arranged for us to meet with a Child Life specialist before we checked in for surgery. She was awesome. We sat in a small, cozy room and she had a book with photos of all the places and people we would meet along the way; photos of doctors and nurses wearing those funny hats and masks over their mouths, the waiting room and then the surgery prep and finally the OR, etc. She showed us a baby doll with the tube and we talked about having an IV so he knew what to expect. Then she took us down to where we needed to check in.

While we were waiting to be taken back to prepare for surgery a woman came in and started loudly unwrapping her Tim Horton’s breakfast, right by the sign that reads ‘Please do not eat or drink, patients fasting.’ Seb couldn’t eat or drink so neither could we. I turned to the woman and asked her to leave. She feigned unawareness. We then decided to play with some of the toys in the waiting room to take our mind off of things. Suddenly we realized we were playing with a Sesame Street Kitchen! Our tummies were certainly rumbling, even at the pretend food Cookie Monster was making for Papa-Daddy. After getting Seb in his dressing gown and transferring his socks and slippers onto George, we read a couple books, trying not to hear the baby screaming in the room next door, getting some sort of ‘simple’ procedure done. At 11am, the anesthesiologist came back to go over Sebastian’s history and thankfully she was ok with one of us heading back with him. Ali did the honors, as I just couldn’t do it this time. I waited for him to re-emerge and he was back in about 5 minutes when we were then taken to the waiting room. We had about an hour before Sebastian would be in recovery so we headed down to the Atrium to get some lunch.

Ali and I don’t get to spend a lot of time together sans kids. We joked about our lunch date in the hospital cafeteria while Seb underwent G-tube surgery. I had California rolls from the Japanese place and Ali got a Subway sandwich. We shared my free Green Tea and sat in by the window in the atrium, where Seb and I usually sit when visiting for appointments. Only a handful of folks knew about the surgery and I was glad for that. No updating FB or Twitter statuses. No texts, except to parents.(Ok, one or two very good friends too). It was just us. Eating. And being together. Sometimes I need to wade through emotions on my own, with my hubby.

After lunch we went to the gift shop (best hospital gift shop ever). Even though Sebastian and I had packed his bag with his favorite books (Mo Willems, Curious George), a couple of his favorite furry friends (George, Elephant and Piggie), my old set of Go Fish cards and the iPad, we couldn’t help but look. Of course we bought another book (The Gruffalo’s Child) and this awesome magnet Curious George story telling kit. I was super excited about playing with it myself (with Seb, of course). We said no to a few other items (miniature Grover, Seb’s current fave) and headed back up to the waiting room.

We were hoping the board would say ‘In Recovery’ but it still said ‘In OR’. I called my mom, Tallula was sleeping but still refusing the bottle and uninterested in rice cereal. She was taking short naps but without a proper meal nearing meltdown status. I wasn’t sure how long I could stay before needing to head back to take care of her. While I was on the phone in the hallway, Sebastian’s Dr. came out to let us know the surgery had gone well. She placed the tube in the second best place as the first wasn’t possible because his stomach is too high up. So it is right in the center, above his belly button.

We had to wait for him to be sent to recovery, where he would wake up next to George and a very friendly nurse and nursing assistant. Once we were allowed, someone took us back to see him. I saw him right as we walked through the large double doors, groggy but awake. I could feel a lump in my throat and I wanted to cry, but I didn’t. He was so tiny in the big, metal crib.  Not being able to pick him up was difficult. The nurses said he was doing well but as soon as he saw me he started grizzling. Who can blame him; I wanted to cuddle too.

While the nurses were checking his vitals and prepping him to be moved to his room, another nurse brought back a gift for Sebastian that had been delivered, before he even left recovery! We have good friends. It was a stuffed tiger from one of his classmates, and chocolate for us. So thoughtful. By the time Sebastian was settled into his room, he was surrounded by furry friends. A koala would join the crowd the next day from his grandma and papa.

The nurses gave Seb tylenol 3 and we were on our way, following his crib to the 7th floor, where he’d stay for another 3 days. There was a hospital couch where Ali would sleep. I would sleep at home with Tallula, spending as much of the days with him as possible. My mom and Jerry were staying for a few days to help and also visit with Seb in hospital. I am so thankful; I cannot imagine having done it without them.

We set up a chair next to his crib and took turns cuddling, draped in cords attached to his body. He was much bigger than the infant I used to cradle in the NICU. The Gtube site was covered in gauze. Attached to the end of his open tube was a plastic bag. He also had a plastic bag attached to the end of his ngtube. Both were draining his stomach. His IV was in his foot, providing him his fluids. He would get his seizure meds via Gtube and the next day they would start with clear liquids and work up to his neocate formula. All via tube. He couldn’t eat orally for a few days. I showed him the magnetic Curious George story kit and we played with that for a bit before I had to head home to take care of Tallula. After she was asleep I went back to hang with Seb and give Ali a chance to get dinner. I can’t remember if his colleague (and friend) came for a visit that first night or the next night. Either way, we had so much love and support surrounding us. Leaving for the night was difficult, but thankfully Sebastian had perfect roommate, his Papa-Daddy.

Up next: Recovery, in Hospital.


5 thoughts on “Surgery Day”

  1. Kara,

    I can’t imagine how difficult all of this has been with juggling it all. So thankful that your Mom and Jerry could be there to help. I pray that the feeding tube is a HUGE success and can come out in a timely manner. Thank you for sharing this story. I am sure it wasn’t easy to write.

    Love you!


  2. Thinking of you and your beautiful family. Hoping Sebastian is feeling well. Lots of love and thoughts to you all 🙂


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