My mother came up from San Diego on Sunday and we all drove to a hotel in Portland for the night before the surgery. We checked into Doernbecher Children's Hospital on March 29th for Jack's Nissen Fundoplication and gastrostomy ("g-tube") surgeries. The Nissen was meant to stop his reflux and therefore help protect his airway. They put in a g-tube not so much for feeding but so that we can "vent" his stomach and release gas and air.
The first challenge we had to overcome was our late surgery time. We checked in at 10:30 am for a 12:30 surgery time. He wasn't allowed to eat after 4:30 am and no liquids after 7 am. Anyone with a 2 year-old will know this is somewhat of an impossible mission. Jack generally wakes up at 7 am and his first word is "downstairs," meaning "get me downstairs and feed me!" So, we woke him up at 4, had him eat some breakfast and then put him back to bed in hopes he wouldn't be so hungry in the morning. He surprised us by doing really, really well that morning. My mom and I took him on a long walk in the rain through streets of Portland (and got to see some really cool old houses in the process!) to distract him prior to leaving.
Our first humor that day was seeing a picture from Jack's previous surgery prominently displayed on a bulletin board in the nurse's station with the warning "Crayons in Stomach on Endoscopy." At his first little surgery, they took pictures of his esophagus and stomach and found a bunch of crayon bits--that he had managed to sneak in pre-surgery. Ha! The surgeons were less amused that day.
Here is a picture of Jack in the pre-op area, playing "glove boy" a silly game we made up to pass the time on one of our visits while we waited in an exam room.
After we tried to force the sedative down his throat (he was NOT thrilled about this), it was time to send him back. Fortunately,our anesthesiologist was this very, very sweet man who took to Jack immediately. He also had a 2 year-old son at home. They let us carry him back to the OR but we had to hand him over at the doors. I did not expect it to be so hard to hand him over. I was so scared...scared about not knowing what was going to come next about knowing that he wasn't going to be the "same" after he came back out of the OR. Instead of handing him to a nurse, the anesthesiologist took him and assured us he would take good care of him. After they left, Jared and I shared some teary eyes as we headed back to the waiting area. It was doubly hard to see my husband so emotional about it.
The surgery took about 3 hours and our surgeon came out as soon as it was over and told us Jack did really, really well and that the surgery was successful (famous last words!). About 15 minutes later, we were able to go back and see him. He was in a lot of pain but I was able to hold him immediately. Apparently, when he woke up, he immediately got to work trying to pull his g-tube out (fortunately, he was not successful). Here he is just post-surgery in my arms:
The next two days were rough. On Monday, I was thinking it was going to be a LONG recovery. Jack was in a lot of pain and learned a couple new words: "hurt" and "ow." I think the most difficult part was that he couldn't tell us where it hurt and didn't completely understand when we would ask him. So, we had to guess and try to stay ahead of the pain. He was on morphine for the first two days and then weaned off onto oxycodone. Hard to have your baby on such big medications. He was very clingy to me and didn't want anyone else with him. At one point, I wound up stuffing myself into the pediatric crib just to cuddle him. (We did NOT take any pictures of that!) My normally very, very active little boy was a complete noodle--did not want to get out of bed or do anything.
On Tuesday morning, we forced him to have sponge bath, get dressed and try to walk. I kept reminding myself of when I was a little girl and sick and how my mother would make me take a bath or shower...and how much better I would feel when I did. Well...she clearly was on the right path because I was amazed at how quickly Jack rallied after we made him get up. Soon, he was toting his IV pole like a pro to the playroom. By Wednesday morning, it was clear that we needed to get out of there. Jack was going stir-crazy, as were we. So, we discharged and came home Wednesday afternoon.
Going home!!!
I think the next most difficult challenge was the "post-Nissen" diet, which is essentially a pureed diet, which you are supposed to be on for 4 weeks. Not to mention that for the rest of his life, he is supposed to avoid a lot of basic foods (fluffy breads, chunks of meat, chunks of firm vegetables, and carbonated beverages of any kind). Changing a toddler diet and essentially eliminating all foods he loved was rough.
We took it easy on Thursday but by Friday, we needed to get Jack out for an activity, so we headed to his little school so he could participate in the Easter party. He had fun hunting for eggs and seeing his friends (who were very impressed with his second "belly button" and the number of band-aids he got to use).
The following Monday, it was clear to me that he would benefit most from resuming his old schedule so one week post-surgery, he was back at school! Laparoscopic surgery is definitely the way to go if it is an option. Had we gone with an open surgery, as was originally recommended to us, we would have still been in the hospital that Friday and he wouldn't have returned to school for three weeks!
That's the positive part of this story. The not-so-positive part was that when we were still in the hospital, I thought I had heard him burp. He shouldn't have been able to burp or vomit after this surgery (which is why we have the g-tube). I tried to tell myself I was imagining it but by Thursday, I was sure enough that I called the nurse. She thought maybe I was hearing something different. But, by Monday, one week after surgery, he vomited. The nurse seemed pretty skeptical when I reported this but I knew in my heart something wasn't right. I knew that when we were still in the hospital. So, two weeks later, we were back up at Doernbecher's for a study to see if he was still refluxing when they put barium in his stomach. Sadly, he was "freely" refluxing as if he had never had the surgery at all. So, we were schedule for a re-do surgery exactly a month after the first one.
I am so thankful that my mother was able to come up and be with us. She took care of Charlie, cooked dinner for us after we got home, spoiled us with grocery shopping, and convinced my husband to smuggle some wine into the hospital so we could share a glass that first exhausting night. She took very good care of me and Jared.
I am equally grateful for my father--having a doctor in the family is a blessing for so many reasons but he has really helped us negotiate this difficult and confusing path of doctors, insurance, bills, etc. He did a ton of research to help us make the right decisions on evidence-based science, encouraged us to switch surgeons so we could get a laparoscopic surgery, reassured us we were doing the best thing and, on top of all that, was still "Bampa" and "Daddy" when we needed him to be. I am so blessed to have these two amazing people to call parents.
Jared's parents were equally as important. They suffered through Jack crying for three hours straight after he came home just to give me a break. They learned how to use his g-tube and were a constant source of encouragement. I'm lucky to have them nearby when my own parents can't be.
