Week 7 & 8 - CT Scan, Surgery and Another CT scan.......

6 week Pre-surgery CT scan

Jake's had a lot going on these last two weeks. He went in on monday (dec 2) for his CT scan to check on his tumor. He had completed the 6 weeks of chemo to shrink it and now it was time to check. The day began in clinic where they accessed his port (put the needle in it). Then we went down to Imaging where he drank his contrast for the scan. We have to wait an hour for the contrast to coat his inside for the scan. Next up was the CT scan where he did awesome. They told us if he would lie still he wouldn't have to be sedated, which he did so no sedation. Then it was back up to clinic to wait for the results. We talked with Dr. Verma and Dr. Jensen (both oncologists) and Dr. Barnhart (surgeon) and looked at the CT scan with them. They were all very impressed with how much it had shrunk and planned on surgery for friday (dec 6). After they drew some labs to check his blood counts we headed home.

We have been waiting for friday from the very first days of his diagnosis. Finally the surgery to take out the tumor. Gr. & Gr. Draper came up thursday to watch Brielle, Zach and Aubrey while we where at the hosptial. Gr. & Gr. Sorenson came up to set with us during surgery. Surgery was scheduled for 12:00 and we were supposed to be there at 10:15. Upon arrival we checked in and put on his sweet looking hospital robe with matching socks. Then we talked with the surgery room nurse, 

Jake rockin his hospital gown and socks

anesthesiologist, and surgeon. They didn't want to access his port because it was in the surgery area and they didn't want to put the IV's in until he was sedated to they gave him some medicine to calm him down so he wouldn't cry when they took him. They told Jen to hold him because it would make him a little loopy. When it started to kick in he looked at Jen and said "Mom don't fall down" and then he layed back on her. We were able to walk with the anesthesiologist to the surgery room before we handed him over. He was a little loopy and kept trying to get Jen's gum out of her mouth. It doesn't really sink in until you hand your little 2 year old over and walk away. We knew he was in good hands but we had also been told all the risks of surgery. The surgery itself was scheduled to be 2 hrs. Gr. and Gr. Sorenson had arrived by then to sit with us. Then we just had to wait. The nurse called after an hour had passed to update us and told us he was doing great. The anesthesiologist came at 2 hrs and told us he did great and they were planning on putting in an epideral to control his pain. She told us that before he went to sleep he looked up, smiled and giggled and then went to sleep. We believe there were more than just doctors in the room watching over little Jakey. Finally at 2 1/2 hrs the surgeon came and talked to us. He said he was even more surprised at how much the tumor had shrunk when he saw it. They removed the tumor along with the right kidney and a few limph nodes. The surgery went very well which was a big relief to us. Gr. and Gr. Sorenson then headed out. There was a little mix up in the scheduling of the epideral so it took longer to get it placed. Jen was able to go back at 4:30 to be with him while he was waking up and I was called back at 5:00 to walk with them to his room. He was in a crib when he was taken to our room, but the nurses switched him to a bed later that night so Jen could lay by him. He came out of surgery with an IV in each hand, an epideral in the center of his back, three stickers for heart monitors, a catheter, a tube up his nose down into his stomach to drain his stomach and a bandaid extending from his right side to the center of his chest a little above his belly button. He was pretty sedated because of the pain meds. It's a little shocking at first to see your child lying there sedated with all those monitors hooked to him. However, the doctors and nurses where very reassuring that everything went very well and he was doing very well. That first night Uncle Matt Crane stopped by to visit.

You don't get any sleep at night with the nurses coming in every two hours to give him meds and every four hours to check his vitals. Then the doctors start at about 7:00 am and check a few times throughout the day in addition to the nurses. Jen believes they watch us on camera and when we fall asleep they send somebody in.

Saturday day and night he was pretty sedated so we just sat around watching tv and surfing the internet. The doctors kept telling us how awesome he was doing. Sunday he was more awake.  It was nice to see him a little more responsive but hard to watch him wince in pain and say he wanted to go home.  They actually got him up and took him for a short little walk. I was surprised he could walk but the epideral only numbs his midsection so he can still feel his legs. It was quite the production as Jen held his hands, the nurse held all the tubes and brought the monitor tree. I just took pictures. It's good to get him up and moving to work his lungs and to wake up his bowels.

Sunday night he was able to take the tube out of his nose  and start having some liquids which for Jake consisted of popcicles. Uncle Matt and Aunt Keri stopped by to visit and brought Jen some Cafe Rio. The cafeteria is getting old. He slept a lot better that night without the tube up his nose. The tube was always making him feel like he needed to cough and he did NOT want to cough so it stressed him out.

Monday he really started waking up and spent most the day watching cartoons and eating popcicles, jello and gatorade. Because he was eating jello they where able to take out the epideral and catheter. The surgeon Dr. Barnhart stopped by and said he was doing awesome and could go home tuesday and he could also start eating solids. First item he ordered was cheetos. So monday night he had cheetos, string cheese and mac -n-cheese with gatorade.  He did really well monday night.

Tuesday morning he was able to remove one of the IV's from his hands. He hates his IV's especially when they flush them. Once we leave he will be able to remove the other one. They want to leave one in just in case the need it. It is suprising how fast he is bouncing back. He was playing with his cars on his bed, playing a little Angry Birds on my phone and rolling around. They told us we would leave tuesday so the day seemed to go on forever. In the afternoon we were able to remove the other IV and the monitor stickers. He is so burned out from being in the hospital that everything makes him upset. They wanted to give him his chemo before they left so they needed to access his port. When it came time to access his port he knew what was coming and wasn't having any of it. Jen and I with the help of our nurse had to  hold him down while another nurse put the needle in his port. They put numbing cream on his port so he doesn't feel it but he was done with needles and nurses. Jen and I were burned out also so it was upsetting to both of us also. We understand that he needs the medicine but he doesn't.  We were finally able to leave at 7:00 pm.

Wednesday Jen called the radiation doctor because we never heard from them during our hospital. Apparently they dropped the ball and hadn't planned anything. After a bunch of phone calls back and forth we were scheduled to have a CT scan for his radiation thursday morning at 8:00 am. So we had to drag him back to the hospital, LDS hospital this time, to get a CT scan and yes they had to access his port again. They also needed to put him completely asleep because they have to be very precise for the radiation. We were with him while they accessed his port and watched as they put him asleep. Again we were standing there with our little two year old hooked up to monitors with a mask on is face asleep on the table. They placed temporary marks on his belly with a marker to make sure the radiation is given in the exact same place everytime. Now he has marks all over his belly to go along with the bandage. They also placed a clear tape over the marks to keep them from washing off. The CT scan only took about 10 min and then we rolled him back to a room to wake him up. He woke up in a pretty good mood and we headed home. The radiation is planned for six days. He will get it everyday next week  and the following monday at 7:30 in the morning. The radiation only takes 1 minute but they have to put him asleep everyday so he has to wake up from it so we will be there a couple hours everyday.

He deals with it so well. He doesn't understand the reason for it all but he seems to know what's coming. When the grandparents walk through the door he knows something up. At the hospital he becomes very reserved and wants to be held all the time. We are constantly telling him everything will be ok and what we're doing is necessary. A two year old should be worried about what toy to play with and what snacks to have not what test or medicine he needs.  It's hard to understand sometimes why he has to go through all this but we feel a peace that everything will work out and that the Lord is watching over us. We see little miracles everyday that prove to us that he is being watched over and blessed to deal with everything he needs to do.

We feel the prayers and support of everybody. While we where at the hospital the Grandparents took turns watching our kids and our neighborhood brought dinners and shoveled our driveway more than once. Our sister-in-law organized a botique to help with Jake's treatment. People have been so amazing. I don't think we will ever be able to pay back everybody that has helped us. We are very humbled by it all. Our other children have been so strong through it all. I'm not sure if they understand it completely but they deal with it very well. They understand that they can't have any
friends over at our house until he is done and that they need to wash thier hands for everything. This trial has brought us closer together as a family because we are basically living in our own little bubble. Thanks again to everybody for thier prayers and support, and thanks to our Heavenly Father and his Son for giving us strength and understanding through it all. So next up is radiation and we'll keep on schedule with week 8 of 28 of his chemo treatment ............