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.