July 16, 2013
Today was our trip to KCK to talk with the doctor’s at KU Med who will remove the tumor from Nathan’s liver. I would love to say that the process was fast, efficient and streamlined, but in reality it was one of the most disorganized visit’s we’ve ever had. We showed up at 9a for his 930 appointment with pre-anesthesia, and they had no record of his appointment. After they started looking deeper they had him scheduled for the previous day. They asked us why we missed it, and we said we didn’t schedule this, the doctor’s and nurses scheduled everything.
So we had to go get admitted, which wasn’t too bad, but we didn’t get in to admissions until 930. When we were done there we were able to go, literally, next door to pre-anesthesia. That appointment started at 10a, when we were supposed to be meeting with the surgeon. The first person to visit was anesthesia and they asked several questions about previous surgeries, allergies and so on. Then we waited for about 10min before pharmacy showed up, they asked us several questions about previous surgeries, allergies and medications. Then we waited for about 10min before a nurse showed up.
The nurse was very nice, and extremely slow talking. She would talk for a few minutes and then stop, and then talk some more, and then stop, this went on for about 20min. She talked to us a little about what to expect after the surgery, she told us that we needed to visit admissions before we went upstairs for surgery and more or less those types of details. When we asked about the lab’s Nathan was supposed to get done and that we were already late to visit with his surgeon, she told us to head upstairs so we could talk with him, and then get the labs on the way out.
Pediatrics is on the 3rd floor of KU Med, and they were expecting us, which was a nice change from the hospital side of the house. But that’s where that ended, we were taken to an exam room and nurse took Nathan’s vitals, all of which lasted about 10min and she was done. We waited in that little room with a 2yr old for nearly an hour before the doctor showed up. To top that off the doctor that came in wasn’t the surgeon, he was an intern (student?) and wanted a brief history of Nathan’s treatment, so we gave that all to him.
The strangest thing was nearly everyone we talked to kept asking us what kind of labs Nathan was supposed to be getting! We had no idea! Thankfully the Cancer Center gave us the labs they had done the day before, otherwise we had the feeling they would do all sorts of labs. Shortly after the intern left, he came back with the surgeon.
The surgeon is Dr. Schropp, he is the Chief of Pediatric Surgery and Program Director of General Surgery. He practiced at St. Jude’s for 12yrs before coming to KU and his second during the surgery will be the head of the Liver Transplant Team, I would put a link in, but I can’t seem to find a link that has their names. After that he talked to us about Nathan’s surgery. He informed us on numerous occasions that it was risky and dangerous which was just a little upsetting.
Originally we thought they would remove the right lobe of Nathan’s liver, but he told us the plan was to remove as little of the liver as possible. Nathan will in essence have two pieces when he’s done, and that as soon as the surgery is over the liver will start to regenerate and grow back together. The chemo will slow that down somewhat, but will eventually heal up after all the chemo is over.
He told us to prepare for Nathan to be in the PICU for at least two days. He said that his hospital stay could last from two days to two weeks, but to plan on staying at KU for at least a week. He also told us that a few months back he performed a surgery on a little girl that had a similar liver tumor as Nathan’s. She was in the PICU for two days and then went home, so hopefully we’ll be home before the weekend. He said that in the PICU Nathan will be tubed and sedated, he’ll have an arterial line, a catheter and tubes down his throat and nose. As soon as Nathan’s insides wake up from the surgery they should be able to unhook him from all that.
Nathan’s surgery will be at Noon, on July 23. We will be on the second floor of KU Hospital
After we left the exam room, we headed down to get labs done. Another harrowing experience, thankfully when we finally got a nurse, they were very sweet. They were able to access his port and draw blood very quickly, in fact considering the entire morning at KU Med, I would say the most efficient part was drawing the lab. We’re hoping this is not indicative of our next experience there.
After KU Med we decided to try and make the rest of the day fun for Nathan, so we decided to have lunch at Fritz Grill. It started out pretty well, Nathan got a kick out of the trains that would drop off the food. Then Natalie saw a roach, Malia freaked out before I was able to kill it. Then after she settled down, she was talking on the phone and saw a mouse run across the kitchen floor. That was it, Malia called the manager, we got free lunch and we may never go back to Fritz again.
After lunch we stopped by the Sea Life Aquarium. It was really nice, we liked how it was laid out and the kids really enjoyed it. There was a nice little question and answer thing that Natalie really had fun with. You had to find the answers that were painted on the walls and at the end if you answered all the questions right, you got a little prize.
We enjoyed the various exhibits, there was a fun little tide pool where you could touch starfish, sea anemones, shrimp and little hermit crabs. There were a couple of aquariums that had domes, so you could crawl in and see the fish up close. They also had a nice turtle exhibit, while they didn’t have very large sea turtles, they did have some nice displays showing off various types of turtles.
After the Aquarium we went back to Crown Center for dessert. We got ice cream from Sheridan’s, I had a Butterfinger and M&M concrete, everyone else had chocolate ice cream…really?
While we we’re still terribly worried and concerned about Nathan, it was a nice end to the day.