My world shattered.

After battling with some serious crankiness, leg pains and constipation for nearly a month my husband on Tuesday 2/26 got ready for work but instead took my daughter to get another opinion about her bowel troubles. I arrived at the doctors office shortly after dropping our older children off at school. The doctor came in asked about her back story and what we had done over the last month. We told him about her crankiness, the ultrasound we had done on the 20th, the enemas his colleague had us give her to move what was thought to be very full bowels, the miralax,  the fact that she had started toe walking all the time, her lack of appetite, the flat shape of her non runny poop, the size difference I was seeing in her legs, her complaints of leg pains that started off and on at about 3 and a half, just like 2 of her brothers, but that had become more then just a night time thing. He asked us to remove her pants and looked at her legs saw that her left leg looked swollen, felt her tummy and felt the thing I had been rubbing on for days trying to get her to pass it thinking it was a partial obstruction. He told us things weren't adding up and wanted to do some more tests, he left the room and called primary children's hospital about doing an MRI. They talked him down to an ultrasound at their facility that was closer to us in Riverton. We were sent home with a piece of paper and a time hopeful that this time we might get some real answers.  As the time neared we tried to get Rebekah to drink the 16oz that they wanted her to have but didn't feel too bad when she refused because she hadn't really peed anyway. We arrived on time and waited as is usual when it was our turn we went back and talked lightly with the tech about what was going on she put the warm gel on Rebekah's small belly she fairly quickly scanned her tummy and moved to her kidneys I could see some pockets of fluid in her left kidney and it looked bigger then when they did the ultrasound the week before I let the tech know and she said it did look a bit swollen to her too. The tech left to get the radiologist and came back with him pretty quickly he looked things over and told us that things didn't look right, that what the ultrasound tech from the week before had said looked like full bowels was wrong and what we were seeing wasn't bowel at all. He left us for a few minutes to talk to the doctor that had sent us and got him on the line in the room for us. Feeling like letting Shawn take the lead on this whole thing I had him do the talking to the doctor and the radiologist explained to me that they wanted to do a CT scan with contrast and that they would need to put in an IV to do it. The tech brought in some crayons and a coloring book I called my mother in law to see if she could head to our apartment to be with the boys because we didn't know how long we would be. A nurse and the tech took us to put the IV in, Rebekah was not too keen on being poked but suffered through bravely. We moved to another room with the huge CT machine donned our lead aprons and  tried our best to help our sweet little girl to hold still and let the "big camera" take her pictures. The tech told us to hang out in the room with her in place on the machine while the radiologist looked at the pics to be sure we got a clear image and could see what he wanted to see. The tech came back into the room and we started collecting our things thinking he had good clear pics and someone else would have to call and tell us what he had seen as is the case with most of these kinds of tests, but she told us to go into the viewing room with the radiologist so he could talk to us and that she would hang out with Rebekah. My heart was in my throat I had just said to Shawn as we were waiting that he was making bad faces and here we are going to speak with him without our child.  He showed us the pictures and pointed to the edges of what he said was a large mass, it covered the whole area I was expecting to see intestines it's shape was odd and had a part that jutted out right above her left hip. I was shocked at just how big it was. They told us she would need more tests to know what exactly it was but that it was a tumor. They had us go sit out in the waiting room so Rebekah could play some, I was bawling, while they called the doctor about scheduling the MRI. We left after being told we would get a call about when to come up to Primary Children's in the morning for a sedated MRI and that she could have nothing to eat or drink after midnight. When we got home we told Shawn's mother what was going on I called my dad and let him know they had found a tumor ( I couldn't say the "c word"). I sent texts to a couple friends who had been helping me cope with the "constipation"  and called my Relief  Society president and left her a message that I would like to be released because I wasn't sure I would be able to do my calling as a teacher. Shawn went to gas up the car and grab us all some dinner, Arby's, one of Rebekah's favorites. As we were eating we got a call from Rebekah's doctor and he tells us that the CT scan showed a big blood clot in the large vein going from the leg into the heart and that we need to pack a few things and come into Primaries tonight and go straight up to the 4th floor some unit called ICS and that we would be met by a Dr. Sato, so we could bypass the ER. We call Shawn's sister back to stay with our kids, toss some stuff in a bag and leave the other children to head up to a hospital neither of us knows how to get to (thank goodness for smart phones). Shawn dropped us off at the main entrance and went to park the car. Rebekah and I head in and ask the guard sitting at the desk where ICS is, she stands quickly and points to the elevator and says 4th floor head left after you get off push the button to open the doors and pick up the phone in the room but asks nothing of us in fact she seems to be thinking we should be hurrying faster then we are. As we come into the little man trap as Shawn calls it someone is leaving so we just walk in, there is a cute little pregnant nurse sitting behind a counter and I say, "we were told to met Dr Sato." She looks at us and says, "this must be Rebekah let me take you to your room." It was about 7pm and our nurse Eric got us settled in, took her vitals put her ID bracelet that was already made on, and let us know that he was only there for us, I have never heard of a nurse having just one patient before. Dr. Sato came in an introduced herself, let us know she and a group of other doctors had been looking at her CT scan and ultrasounds and that the clot looked old and would not likely cause a problem but that we would stay overnight and the MRI would be the next day. After she left other members of Rebekah's Team came and talked to us about things each of their specialties would bring to her diagnosis and immediate treatment. A pediatric surgeon came and talked about the options for biopsy and said she would be doing one or the other based on what she was feeling when she got in there. A Urologist came and talked about what his colleague Dr. Si ( sounds like sigh)  would likely do to address the kidney swelling ,a sent being the best option but not knowing if it would be able to be placed at all. And Luke, her Oncologist, came to talk about what the biopsy might reveal. Some of these doctors came in several times and one of them wrote up an order for morphine, we didn't know till she had been in pain for a long while, we were waiting for the time to give ibuprofen again and Eric mentioned  that she could have the morphine in the interim. It feels weird to say yes, please give her the morphine after only giving her ibuprofen at home and sending her back to bed when she would get up in the night complaining of leg pain. Once she got he morphine she actually slept without squirming around and making fussy sounds for the first time in weeks. But that only last for a little while. She really need to go pee but couldn't get it out so at 4am we had the nurse place a catheter, which was very difficult for everyone in the room. but once it was in it drained quite a bit of fluid before it just stopped draining and Rebekah became so uncomfortable Shawn dashed out and brought back a nurse to take it out. It was decided by about 7:30 that Rebekah wouldn't be having the MRI but instead would have a biopsy, port placement, bone marrow aspiration, scopeing of the bladder and vagina, and hopefully placement of a stent and a larger catheter all done as one surgery so she wouldn't have to be sedated more then once that day, (they have a rule about that). One of the urologists came and talked to us about what would happen if they couldn't place the stent it involved placing a tube through her back directly into the kidney (so glad that didn't have to happen).  We were scheduled for around noon to start the surgery, everything went at least as well as expected even if it did take longer then we thought it might Dr. Si pulled off something of a miracle that was the talk of the hospital for days with the way he placed her stent, he even seemed pretty pleased with himself when he came out to tell us.  My baby had had her first IV, her second IV and her first very major surgery all in 24 hours.