A terrible, horrible,no good, very bad day

Monday was a Terrible, Horrible, No Good, Very Bad Day. We were awoken by the doctors at 6:30 a.m. doing their rounds. Sara did not want to have anything to do with them. She was dizzy, and hurting and tired. They left her be, but reminded her she had to have another MRI around 9 a.m. While we waited for her MRI, we talked, I rubbed her hand, and played on the computer reading different emails people had sent. Her nurse for the day was Roni, who was an older women who had a very calming sense about her. She let Sara rest until 8:30 when they had to check her vitals and get her ready to have another MRI.

Sara told her she didn't want to have an MRI, and started flipping out. Her IV was bothering her, and she then started saying how she hated every cord, cathader, and machine she was hooked up to and just wanted to go home. Roni let her get upset, agreed with her and how she was feeling, and when Sara finished spoke very calmly to her letting her know why she had to have another MRI. Sara agreed to get it done.

They rolled Sara downstairs in the bed, and when we got to Radiology, they had to move her to a new bed. Well Sara did not want to move, or have anyone move her. She started kicking, and yelling at the nurses. One nurse told another that she was very combative and that they needed to get some valium in her before they could sedate her for the MRI. Once the 5 plus nurses moved her, and put her under for the MRI, I went and ate breakfast.


Nicole's school class was going to the Zoo that morning and so my mom took my place at the zoo and took Ben with her as well. The night before she left her camera at the hospital and so she stopped in with beautiful flowers and so she could get her camera. Ben was screaming in the car when he saw me, and was upset he couldn't stay. My mom offered to stay at the hospital but I knew I had to be with Sara. So off they went to have a great time at the Zoo. It was cool outside, but not stormy like it had been days earlier.

While I was waiting for Sara to wake up, I decided to go get ready for the day. When I got back downstairs to the recovery room she was still out. Another mom was there with her child and so I asked why she was there. She told me it was for a routine check up, and then she asked me what was wrong with Sara. Immediately tears filled her eyes, and she just told me how sorry she was. When Sara finally woke and we were ready to wheel her back to her bed, the lady told me good luck with such heart felt words, it made me tear up. It is amazing what strength people can give to you when you are having trials, even people that don't know you. We have been blessed in so many ways, and I know God is watching out for us.

When we got to the room Sara was still not very happy and didn't want to eat, drink, or have anybody touch her. Sara kept asking me about her friends, and what about school, and how was she going to be able to make up all the homework she was missinig. She was stressing herself out and so I knew I had to get intouch with her teacher and have her tell Sara not to worry. She would listen to her. While I was dealing with her Craig was at RC Willey on the phone with the insurance company making sure everything was preauthorized, calling doctors, and making sure everything was going to be taken care of. His mind was not at RC Willey. It was on Sara, insurance, the kids, and everything else you could think of. When he was at home, his mind was thinking about RC Willey, Road Runner, Sara, etc. His mind was going crazy, and it was hard for him to concentrate on anything.

After Sara was in her room, the optamologist stopped by to see Sara. She was still sleeping and so he came back a while later. She still wasn't up so he came back after lunch. Around 1 p.m. my mom and Ben stopped by to give Sara a polar bear stuffed animal, and lets just say I have never in all my life seen my daughter act the way she was acting. I felt helpless, my mom didn't know what to say or do, so she left with Ben, Roni came in and tried to get Sara to feel comfortable but nothing seemed to help. I felt like I was living a nightmare. Sara is usually so calm and I was watching a monster take over my child's body. Snow Slade (the optamologist) came in for a third time, but Sara would not let him do anything to her. I was embarrassed, because of the way she was acting. So he said he would try again tomorrow.

Her hand was swelling from the IV and so the nurse had to bring in the IV team. She went nuts! Screaming at everyone, telling them to leave her alone. While this was happening my phone and the hospital room phone was ringing every minute for a good 10 to 15 minutes. The few times I answered I told the people I would call them back, and I am sure they were taken back by the tone in my voice, because the calls were coming in at the worst possible time. The IV team ended up being able to save the IV and not have to poke her again, but I have never in my life heard her yell like she was. As the IV team left, I saw outside Jeff and Kristie Hansen waiting to come and visit.

They stood outside the room listening to Sara scream and I am sure were feeling very hesitant to come in, but how grateful I am for their visit. They brought in such a sweet spirit into the room which I know Sara felt as well, because she immediately calmed down. She stayed calm unless we spoke about IV's, which we changed that subject very quickly, and they helped take her mind off the dizziness and pain she was feeling. They gave Sara a frog webkinz which she held the rest of the day. This comforted her so much!

Roni and Syd the nurse pracitioner came in after the Hansen's left to examine Sara. Syd was surprised the cath was still in and asked me if I wanted it to be taken out. I responded no. If she moves she throws up, she is fiesty, and in so much pain. So Syd decided to order Sara a steroid pill of some sort. Roni brought the steroid to Sara and told me that in four hours Sara will be back to herself. The medicine works fast, helps with the swelling in the brain, and the dizziness. Roni had taken the medicine before and told Sara it was nasty tasting and so she ordered her an Oreo shake to take the medicine with. Sara took the pill and fell asleep.

While she slept I just sat there feeling so helpless, thinking there was no possible way we would ever leave this hospital this week. While she slept, she got a delivery from her school class- a plant and a get well balloon. What a sweet thing for them to do. I knew this would comfort her and so hopefully she would relax and not worry about what she was missing at school. I returned phone calls, emailed people and read the bood Princess Academy.

Shift changed, and we got Nikkie as her nurse. By this time I was starving, because I hadn't had much to eat because I didn't dare leave Sara earlier, but she had calmed down so much I hurried and ran downstairs to grab something to eat. When I got back from the cafeteria I opened the door to her room and immediately she flipped. Mom you stink like spaghetti. Stay out! So I hurried in the room and stayed as far away from her as I could. I felt bad I made her sick by the smell, but she was right on. I did eat spaghetti. If anyone came in smelling like food she immediately put her blanket to her nose. While I sat in my corner, I called Craig to see how things were going. Tyler was playing in his first baseball game of the season and Craig was letting me know what was happening. Ty played first base, pitched, and short stop. He hit, got beaned, and walked twice. Ryan took over 2oo pictures of the game and emailed me the best ones, so atleast I got to feel some what part of the action. While I was on the phone, Sara asked around 8 p.m. if I would turn on the t.v. I was shocked! She watched Disney for a couple of hours until she started feeling dizzy again and fell asleep. Wow! Roni said this pill would make her start feeling better, but I guess I didn't realize what a miracle drug it truly was.

Around midnight,Sara woke up crying, because her arm was hurting so bad. When the nurse looked at her hand it looked like a balloon. She said she would have to have the IV team come in and take a look. Sara looked at her with the saddest expression and pleaded with all of her heart to Nikkie, begging her just to take out the IV, to not put a new one in, and promised she would drink fluids. Nikkie was a bit hesitant, but agreed to take it out, but warned Sara if she didn't drink they would put another one in.

About 1 a.m. Sara was complaining again about her cathedar. I got the nurse, and Sara informed her, she wanted it out. I told Sara that she would have to get out of bed to use the bathroom. Sara said, fine I will. Take it out. So she did. Sara immediately needed to use the bathroom so they brought her in a chair to go the bathroom on. It took her a while but we got her up on it, without throwing up, and she felt much better. She was starting to feel a bit better, because she realized how bad she was smelling. She wanted to smell like home, and so we put her in her p.j.'s since she had NO cords attached to her any more, and I rubbed smelly lotion on her to help her feel like a human again. She woke up two more times during the night to go to the bathroom.
But other than that she slept like a baby.

It is so nice to see her without cords and starting to act normal again.

The day after surgery

Saturday night Sara was up and down a lot. Since she was in the PICU, Craig couldn't sleep in there. So when she would fall to sleep Craig would go into her new room in the Neuro Trama Unit. As soon as he would lie down and almost be asleep the phone would ring and it was either the nurse saying Sara needed him or a few times it was me at home asking questions or Tyler needing to say hi to his dad. To say the least Craig go very little sleep. He is such a little sleeper any way, that even when he was asleep, I doubt he was in REM.

The next morning, they needed to pull out Sara's IV's. Well as you could imagine she flipped out. She did not want them to touch at all, so Craig was called in to help. Little do they know that needles and anything in his loved ones bodies makes him so queezie that it is not good. They first took out 2 of the 3 IV's in her arms. Next was the IV in her neck. It is in a major vein, and they had to use some sort of pliers to get it out. During this, as you can imagine, Sara was a mess. Craig started getting pale and light headed and so the nurse asked him to leave. She had never asked a parent to leave before and she felt bad to do so, but if she wouldn't have Craig would have been on the floor. After the IV in her neck was out, Sara would not allow them to touch the one in her foot. They would have to get it out soon because it can cause infection, but they told her they would wait.

While they finished taking out her IV's Craig went downstairs to eat breakfast. I felt so bad for him because he was so tired and had to deal with a lot by himself. While he was doing this I was home getting everything organized with the kids for the next week, getting ready, straightening the house, and downloading pictures so I could blog later. Around 11 a.m. Craig called and informed me that they had moved her to her normal room and that they would be in there when we arrived. Room number 2013. She still would not let anyone touch her foot and it was starting to worry Craig.

On the way to the hospital Sara called crying wanting to know where I was and why I wasn't there. It broke my heart. I was only in P.G. and I just wanted to magically snap my fingers and be in her room. Maybe in the next life I will be able to do this. I hurried to the hospital, thinking the whole drive I need to be with her, to hold her and comfort her. But the other kids needed me to. Last night Ben was crying and fussy. He wanted me to hold him and not leave his side, same with Nicole. When we ate dinner at Amy's Ben and Nicole both had to sit on my lap while all three of us ate, or tried to eat. So I knew I couldn't let myself get down and feel bad, because they needed me as well. So I just hurried to the hospital. When we arrived, my parents and Amy, Ryan, and there kids minus Christian were there. So to say the least it was a bit crowded, but Sara appreciated them visiting.

Amy and Ryan at the hospital visiting Sara.

Grandpa, Tyler, Sammie, Chey, and Nicole's fingers. The kids were STARVING after the long drive, so lucky Aunt Cindy put fruit snacks in the basket for them. Good thinking!
The Exhausted Craig trying to stay alert and visit. Sammie and Chey drew Sara a picture and gave it to her. The tech could hear us and came in and invited all the kids to come and get slushies. d They could have a Root beer slush or Lemonade. The kids loved this and so did the adults.

Smile!!! Everyone loved the slushies, even Grandpa. They were so cold that everyone started to get brain freezes. The craziness ceased for a while, but soon it was getting loud again. Ben wouldn't leave my side, which was hard because Sara wanted me. Everyone tried to distract Ben with the fruit snack's Cindy had given us in the basket to toys, but he would just cry unless I was holding him. The phone kept ringing and so Craig was answering the phone calls. It just kept get

louder and louder. So I turned to Craig and said it is time to leave. I told him to call his sister back and he needed to take the kids now. I was going crazy and so I can only imagine how Sara was feeling. She just kept saying, I am sorry guys but you are so loud. Please be quiet. After they left she was heartbroken because she knew she hurt everyone's feelings. I told her that she didn't and she needed to rest.

She fell asleep for a few hours but woke up because she felt like she had to use the bathroom. She had a cath in and so the nurse had to figure out why she was feeling like she had to go. Well she had a kink in the cath and there was over 500 cc of urine trying to come down and couldn't. While the nurse fixed this, I worked on getting the IV out of her foot. Sara was so focused on the discomfort of her bladder she had no idea I was even taking tape off of her foot and then the nurse hurried and pulled out the IV. It worked out great. Craig was relieved to find out we got it out and there was no infection.

At 5 p.m. Sara asked what the family was doing. I told her they were at Grandma's eating dinner. She had a sad expression on her face and I asked what is the matter. I will miss Sammie telling me that we are late and giving me a hug. I just want to be home with everyone instead of here at the hospital.

It was now around 6 p.m. and we were waiting for Craig's sister and her family to arrive. So there we sat in the dark because the light and noise bothered Sara. Luckily while I was home I had downloaded pictures I could blog about and had a friend let me use her laptop so I had something to keep me busy while we waited.

Colette, Brittney, Allison, and Katie came around 6:30 or 7 p.m. As soon as they came into the room, Sara perked right up. She talked and talked with them. After an hour of visiting she decided she wanted to move to her other side so she could see them. The whole visit her back was to us, and she was looking at the wall. So I got a nurse to help her move. This was very challenging. It was hard to watch her do this because of the amount of pain it caused. Well she slowly made it to her back and then she threw up a few times. The only thing she had in her stomach was gatorade and now it was no longer there. About 30 plus minutes passed and she gained her energy back to turn the rest of the way. And once again, she started puking. It was so sad, and she was exhausted. It is crazy how you take something so simple as rolling in bed for granted. She fell asleep for a few hours to be awoken by nurses for vitals and everything else.

That night was a long night. Sara woke up needing to hold my hand every hour for at least a half hour at a time, then I would go lay down to be called upon again. I would have done more for her if I could and the lack of sleep was the least I could do for my sweet baby. At 2 p.m. her bottom leg was going numb and so we had to turn her to the other side. Well once again it took an hour and their was a lot of throwing up. I felt so bad that we had to move her but we had to. She finally got back to sleep around 4 a.m. and we slept until 6 a.m. when the nurses came in to do tests and then the doctors showed up. So I guess we are up for the day, because it was now time to go down and get another MRI.

Day of Surgery

Aunt Cindy came over to the hospital with Brayden to be with us the day of surgery, April 25th.  She brought us a picnic basket full of goodies which was very kind of her.

Grandma and Grandpa with Sara before they wheeled her off to surgery.  She received a blessing  before going into the surgery room from Craig and grandpa.  We are so grateful for the power of the priesthood.  Sara had a difficult time while they were getting ready to take her away from us.  And to be truthful, it wasn't very easy on us to have to her leave with two men we don't know who are taking her life into their hands.  But we trust them and know things will work out the way they are suppose to.  After saying goodbye to our sweet Sara, we went down to the cafeteria for breakfast.  
Since her surgery was on saturday, no one was in the waiting room except us.  Everyone did what they could to pass the time of her being gone.  Craig and Grandpa talked and walked around.  Grandpa watched part of a movie.  This was the worse part for Craig and he lost it.  Everyone felt so bad for him.  He just cried and cried, wishing he was the one in surgery and not his little girl.  Craig kept walking around with tears streaming down his face, and there were many hugs shared and many prayers said in the waiting room.  Craig and I went to a corner in the waiting room and had a prayer together and just hugged.  He didn't want Sara to see how hard this had been on him and so as soon as he was gone, he cried and cried.  But when she came out of surgery he was strong for her to help be her strength during the recovery.  All of us during this have broken down, mine was at the hospital when we first initially heard that she had a brain tumor, so was my moms.  I am glad we had it at different times so while one was weak the other could be strong. 


Cindy and Grandma talked to each other and to anyone who called to see what was happening.  They were also calling others and letting them know as well.
And of course I was on the phone telling family and friends the updates, trying to keep my mind busy thinking of other situations, comforting Craig, and praying constantly.  About 10 a.m. the phone at the receptions desk rang and I answered it.  It was the nurse telling us that Sara was stable and doing great.  That they were almost to the tumor and they would call us again in about an hour to an hour and a half to let us know when they were finished.  Well 45 minutes later the phone rang.  Craig and I had just finished praying together and he rushed over to answer the phone.  It was the nurse saying that they were finished.  We were shocked at how fast everything went.  Dr. Brockmeyer came out and told us that everything went well.  There was no complications, she had little blood loss.  He said that he is 99% sure that the tumor is choroidplexus papiloma, which is an uncommon tumor.  But for our case that is good because uncommon tumors usually mean they are cancer free.  We were so relieved.  He said the tumor was by the brain stem but not attached and came out really easily.  He then told us how she would be going to the PICU over night and we could see her in 45 minutes.  

About a half hour later Dr. Bishop the attending surgeon came and talked to us saying similar things but also told us that it was one of the easiest tumors he had ever taken out.  I know the prayers and love of all our family and friends truly have helped in all of this.  Thank you!
While we were waiting for them to tell us we could see Sara, Craig spotted Sara being wheeled into the PICU and ran down to see her.  The doctor that put her under was standing there waiting for us to come and take a look.  He was very kind to let us see her.  Craig came back with tears streaming down his face, telling us I just love that little girl so much and we hugged. We knew everything was going to be okay.
After surgery Sara slept and slept.  They put many IV's in her for the surgery.  One in her neck, 2 more in her arm (3 total), and one in her foot.  She did not like it when they took them out.  It was a good thing that she was put under when they put them it.  I don't blame her one bit.  She has so many tubes and wires coming out of her body it was sad.

Sara's battle wound.  It is about 5 inches long.  When we first lifted up her hair to look at what took place all of us were shocked.  I could see why they had to have so many IV's in her to make sure everything was completely asleep.  We could go into the PICU 3 at a time.  So Craig and myself went in first.  Then my parents went in with Craig.  When they came out Cindy and Craig's brother Scott went in.  After knowing she was doing good, my parents and Cindy went home.  I am so grateful for family and friends and the support we have received during all of this.

Craig and Scott in the PICU.  Craig' mom and Aunt Venna Dee also came in to say hi.  After a little while of visiting and all Sara was doing was resting I decided it was time to go home and be with the other kids.  Craig was taking his night and then on Sunday I would come up with the kids to see Sara and to relieve him so he could go and get some sleep.  Before leaving we all went down around 2:30 to each lunch and visit.  It is hard to not stay, but I knew I had to get arrangements made for the other kids for the coming week and get some sleep myself.  When I got home, the first thing I did was shower.  It felt so good, and then called the many people who had left messages on my answering machine.  I was so surprised at all the messages and know we are being truly blessed with everyones out pouring of love.  Then I went up to my sisters Amy's house.  She has been amazing through all of this because I know it has been a huge sacrifice for her to not be up at the hospital spending time with Sara.  She is a nurse and so it is normally her who is at the hospital with whomever in the family staying by their side, but this time I needed her most at home with my children.  Ben, Nicole, and Ty love the Ortiz family so much and they have so much fun being with them, I knew if they were with her it would make this transition easier on them, especially for Ben.  She was great!  When I got to her house, dinner was ready to eat, which was yummy lasagna and I was served by Ry.  I couldn't have asked for a better meal and better treatment.  I was already tired of cafeteria food and this hit the spot.  Then they allowed me to relax while they cleaned up.  I truly felt like a princess who looked like she had been hit by a truck.  

We stayed a while and visited, but my exhaustion took over and we went home.  I was hoping to go to bed, but that wasn't the case.  Ben and Nicole needed serious attention and I had many phone calls to make.  Mindy stopped by and informed me that my wonderful ward and friends already figured meals for the week and many wonderful friends had volunteered to take my kids.  I am so deeply touched with how everyone is so willing to help.  I have the best friends and family ever!!!  Thank you!!  By having so many people willing to help made it so I could focus on my kids more and only had to make 20 phone calls instead of 50.  

While I was doing all of this Craig was with Sara.  His sister Colette and niece Makenzie came to visit.  They got there during the hour that you can't have visitors and so they went and ate dinner.  Sara started waking up and talking a little more when they got back from eating.   Sara would wake up and get mad that she had so many cords on her body.  She wanted them off!  She did not want anyone or anything to touch her.  She would say, I want this off and this off and this off, pointing to every contraption that was on her.  The nurse told Craig most kids aren't that aware of everything on them that soon after surgery.

Craig would tell her she can't have everything off and try to explain to her that they need to have them on her to make sure everything is alright.  But she didn't want to listen she kept saying I want this off and this off.  Well she continued to do this and finally she pointed to the heart monitor cord and said I want this off.  Craig told her Sara you need to keep the heart monitor on so that they know you are alive and that you are okay.  She replied, Dad I wouldn't be able to talk if my heart wasn't beating.  I will tell them if I am not okay. 

I love that she is being a fighter during all of this and wanting to get better and come home.  And yet as she is fighting, she is so sweet.  At 9 p.m. I received a phone call from Sara.  She wanted me to be with her, and that she loved me.  I told her the same and that I would come up tomorrow.  You could tell she was still groggy and wouldn't remember anything about the night, (which is a good thing) but I know she meant what she said.  I love her with my whole heart and would have done anything so that she did not have to go through this surgery if I could, but I couldn't.  Sometimes you feel so helpless.  But at least we have love, prayer, family and friends, and the priesthood to help us feel comfort and peace through all of our challenges.

 

Room Service please

On Friday April 24th Sara was introduced to the luxuries of being a patient at Primary Children's.  She had people come by with a cart full of art supplies, play dough, games etc. and gave her what she wanted.
Then she learned about Room Service, which she thought was the best thing ever.  She could order over the phone what ever she wanted, when she wanted it.  She could have steak and shrimp for breakfast and pancakes for dinner or whatever she wanted.  Her first order was a green salad with ranch dressing, a strawberry smoothie, and a pint of chocolate chip cookie dough Dreyers ice cream!  She didn't eat the salad, because she didn't like the dressing, but she liked everything else.  Grandma had brought her a footlong sub, for all of us to share.  But Sara ate the whole thing minus maybe 3 bites the Craig took.  I don't blame her for being hungry, it had been over 24 hours since she had food, and she wouldn't feel like eating for a few days after surgery.  That night while she ate, we watched a few Disney movies, and had fun laughing.   Around 10 p.m. the nurse came in and started her IV fluids.  Well her IV started causing a lot of pain and so he stopped it.  He let her relax and around 11:30 came in and started it again.  Well she started crying so he had the IV team come up and start a new IV.  She didn't like this.  Once we calmed her down by watching Disney things were better and finally around 2 p.m. we fell asleep, to be awoken at 4 p.m. by the nurses.  Craig and I had a hard time falling back to sleep.  It was a long tiring night, but we will do anything to make sure Sara is at peace and better. 

I can't see

On Thursday April 24th, while Sara was at school, she was running during recess and got dizzy. She fell down on the ground and when someone came to help her up, she told them that she couldn't see anything out of her left eye, and her right eye was blurry. The school called our house and Craig told them he would be over. School was getting out in 20 minutes so he waited so he could get everyone. On Monday, we had taken Sara to the doctors for a sinus infection. Well things weren't getting better and so on Thursday morning we called and got her an appointment for 3:30 that day. So after Craig got the kids home from school, and Ben, Nicole, and Ty situated he took Sara to her appointment. I was drug testing during all of this and Craig was communicating to me what was going on.

I finished testing at 3:45, so I was heading to the doctors to be with Craig and Sara, when Sara realized she forgot her homework at the school, so I told her I would go get it, then pick up Nicole from dance, and meet them at home. I was thinking that her sinus infection was causing her eyes to do silly things and that everything would be fine. Well at 5 p.m. after dropping off Anna home from dancing, Amy called me and said I have Ben. I told her to bring him to me at home, and she informed me that Dr. Bennett was setting up with the hospital for Sara to go and get a CT Scan. I was so surprised. Craig hadn't said anything like this to me when we had talked, so I rushed down to the doctors office.

We went over to Mountain View, had the Scan done, and waited forever, while the radiologist looked at the film. Well I know why it took forever, because this is when they found the mass in Sara's brain. We were all in shock! My mom was already at the hospital with us, since she works in Xray there, and soon my dad and sister Amy were there with us. We all stayed pretty calm, especially around Sara. We didn't want to flip her out, especially after the long day she had already and the not so fun time we had putting the IV in. She hates needles, and I think everyone in the entire hospital knew that as well.

When we discussed the situation we would always leave her watching t.v. in the waiting room and we went else where. Dr. Bennett came over shortly after finding out the results, and told us tomorrow we would be heading up to Primary's and that he would call us tomorrow morning with the time we had to be there.

On the way home there wasn't much talking. We all were just shocked and Sara kept asking what was wrong. We knew we had to tell her, but figured it was best know to let her get a good nights rest for the long day we would be having tomorrow. Since it was now 10:30 p.m., and she had been with doctors since 3:30 that day, we knew we were being smart.

Craig dropped me off at the house, so I could call family and friends, while he and Sara drove up to Amys to get everyone else. Then at 11 I had to go drug testing, so Craig got the kids to bed and started doing his RC Willey friends and family stuff, while my sister Amy came over to help me finish the teacher appreciation door stuff. At 1:30 p.m. we decided it was time to go to sleep.


This is Sara at home after having the CT scan. This picture was actually taken the next morning before heading up to Primary's.

Sara and Whit putting on shows

Easter

Woodhouses

Playing in the Rain