More Raider Nation aka RMR pics

Raider Nation, family, & friends X-mas surprise for the Jensens

On Sunday we watched the Raider vs Broncos game with our friends James & Melanie. It was a very intense game but, in the end the Raiders pulled off one heck of a win. However, the night was not over & the fun was just beginning. It started off with my mom popping in , then Shawnee & Dusty, & then Anita yelling "Merry Christmas Jensen's!" She told us to come outside for our surprise & when we did there were so many cars full of RMR aka Raider Nation. See I have a friend I grew up with Robby Lambros & is co-owner with his brother Richie who owns Club Abyss. They apparently host a Raider nation every Sunday here. Robby told Scotty's story to them & that is how it all started. People whom have never met us wanted to give us the best Christmas every. Oh and they did but, they also showed us what Christmas is really about. I can't tell you how much my family appreciates everyone and I mean everyone pulling together & giving us the best Christmas ever. Thank you so much Robby Lambros, RMR, St. Therese Church, Discover Card, Sandy City, friends, & family. God Bless You All!!!

The shunt is hurting his stomache

Scotty has been experiencing some stomach pains caused by the shunt. It had gotten so bad that I took him to see his pediatrician. She advised that they needed to take some x-rays. The x-rays revealed that his tubing from the shunt is lodged against his diaphragm causing him discomfort. She advised to go see his surgeon asap. Monday evening his pain progressed & he was now feeling it in his right shoulder. So, we took him to PMC emergency center & they too took some x-rays. They confirmed that the end of the tube from his shunt is lodged between his liver and diaphragm. This can cause discomfort in his right shoulder. They spoke with Nuero & they advised it should move on it's own. Now being Wednesday nothing has changed & he continues to have such pain. He is scheduled to see his surgeon Dr. Brockmeyer on Thursday & he will determine whether or not Scotty will need another surgery for the shunt. I will keep you all posted. Here is a picture of the bruise he got across his chest from the shunt.

Christmas Blessings

Dr. Brockmeyer came in on Tuesday & looked over Scotty & said "do you think your ready to go home?" It didn't take Scotty long to respond with a big YES! So, we packed up & finally got to come home. The last few day's Scotty has had no fevers but, is still experiencing headaches. As long as they don't get worse we are okay. The headaches go away when Scotty lays down. This means that he doesn't produce as much fluid when he stands up & his body needs to adjust to it. They said it will take some time but, it is working like it should. In case your wondering what his full diagnosis is it called posterior fossa tumor & hydrocephalus. I am still educating myself with his diagnosis. This has definitely been a life changing event & one heck of a roller-coaster ride. My advice to everyone is go on your instinct if your child is sick take them to the Dr.
3400 children are diagnosed a year with tumors. This number is so significant it seems but, it is reality. Unfortunately, we are living with this reality. But, we are fortunate that he had a tumor that was benign & operable. He will continue to have quarterly check ups. Dr. Brockmeyer said that 50% of tumors grow back & 50% of the shunts go out in the first year. Let's hope he is one of the ones in the good 50%. I will keep the blog updated with his recovery. Until then we are going to enjoy our Christmas Blessings with having Scotty home & most of all that he is still here with us. God Bless!

Surgery #8 update

Well, Dr. Brockmeyer came in this morning & said "guess what Scotty there was a cancellation & we are taking you next." Scotty said "let's do this!" He went in at 9a.m. & was out of surgery about 10:30am. He seems to be doing well & is feeling good so far. We hope that it continues & I will keep you all updated. X-ing our fingers that we can go to the beach tomorrow. (This is code for go home.) We don't want to jinx it or get our hopes up just yet.

Here are some pics from Scott's 36th B-day with some family & friends at the hospital. Thank you to my mother-n-law & sis-n-law Katy for getting the cake. He absolutely loved it!

Oh! I almost forgot the Christmas Party was on Saturday. Scott stayed with Scotty while me & the girls went to the party. My grandpa brought his web cam & we had ours on the laptop at the hospital so, it all worked out & Scotty was able to see & visit with everyone. Thank God for this wonderful technology. I do not know what I would do without it.

Utah Utes Football players come to visit Scotty

Scotty got another surprise today that his grandma Ortega had arranged. He was not quite sure who they were standing at the door but, then they came in the door and introduced themselves. Mike Wright #20 & #94 I think? They were very nice guy's and Scotty sure liked visiting with both of them. I am sure glad they came & I hope they both know they sure made Scotty's day.

Suprise visitors!

Look who stopped in to say hello to Scotty! Daron Williams, CJ Miles, & The Bear! They gave him a signed basketball, autographed picture, & water mug. It, was so good to see Scotty happy. He said "I am never going to wash my hand again!"

EVD get's plugged

"I found this old pic of Scotty & it just brought a smile to my face so I am sharing it with you all."

Scotty had a rough couple of nights after surgery #6. He was carrying a fever, shaking, & no appetite. Scott had noticed that his EVD wasn't working appropriately & brought it to the nurses attention. Nuero tried fixing it on 3 different occasion. When Syd came in this morning she said the EVD needed to be replaced & he would have to go to the OR this afternoon. So, about 2:30 p.m. Scotty headed off to surgery #7. He is recovering now & is very sleepy. Same game plan of treating him on the antibiotic until Monday. Hoping for no re occurrences of bad cultures. I guess every time a bad culture comes back they reset the amount of time he stays on the antibiotic. I am sure hoping he is on the road to recovery now. I can't believe all the hick-ups he has had to deal with. Crossing our fingers!!!

Unexpected surgery #6

Scotty spiked another fever Friday evening of a 103. They had to take all their labs again which is horrible to see. No child should have to do these things & it is so hard to sit back & watch him endure the pain. Dr. Brockmeyer is not in town again so his partner Dr. Warner came in to go over the labs with me Saturday morning. He stated that the labs for Scotty's EVD shows infections as well as his white blood count is up again. He advised me that Scotty needed to have another surgery & they would take out the EVD and replace it with a new one. So, off he went to surgery #6 on Saturday morning. His surgery went well& now he has another battle wound. He continues to have a fever & we are hoping that goes away within the 48 hrs. They have him on antibiotics again to treat infection & hopeful that they will not have to pull his pick line. I was so hoping that he would have surgery on Monday to place the shunt & we would be home on Tuesday. But, since this set back we are looking at yet another 7-10 days in the hospital. Hard to believe that we have been here for almost 7 weeks. I hope this is it & that he gets well fast & remain strong for surgery #7. "I hope #7 surgery will be the last." To all of our blog followers Thanks for all your support and prayers and If, you are a facebook followers we appreciate all comments, love, prayers, & support.

The Jensen's Thanksgiving

The Jensen family had a great Thanksgiving at the hospital. My family played phase 10 & Kierra won. We went down to the cafeteria to get our food & came back up to his room to eat it. My whole family came up to see Scotty & he was so happy to see them but, sad to see them leave. He said he knows he misses them but, didn't realize how much until he saw them. He hasn't seen his cousins in over a month & it was nice for them all to have come up. We also got other visitors my father in The Townsend family, my mother n law, My uncle David & Aunt Jan, My cousin Melissa. It was nice to visit with everyone.

Here are some pics of Scotty's new pillow my Aunt Jan made for him. There is also one with his favorite nurse Ramone.

Won't be home for Thanksgiving

Dr. Brockmeyer said that the soonest they will consider doing surgery for shunt placement is early next week. Unfortunately the swelling from Scotty's lymph nodes haven't swelled down enough for him to do surgery. With the Holiday being just a few day's away he know this place clears out & no one will be here do to do his surgery. So, Thanksgiving for our family will take place here at the hospital for my family but, wil all be together.
Happy Thanksgiving to you and your families.
"Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough.----Oprah Winfrey."

Scotty's off the vancomycin

So, Saturday Scotty still wasn't feeling well & had started to get red man syndrome. His lymph nodes were so swollen that nuero ordered a CT scan. They found that his lymph nodes were looking abscessed. The new plan is to stop the vancomycin & treat him with 2 other antibiotics that will help with viral as well. I can't recall the name of them right now but, they are suppose to be just as good. My mom spent the night with Scotty Saturday night to relieve Scott and I. When we arrived on Sunday you could tell the difference. He wasn't having fevers, pain, & no redness. He says he feels much better & the swelling seems to be going down. We are hoping when Nuero comes in tomorrow morning that the swelling has gone down even more & they will give us date for surgery. We are still staying hopeful that will be out of here by Thanksgiving. I will update you as soon as we here something. Here are some photos to share with you so you can see what he looked like with the swelling and red man syndrome.

Scotty's set-back

Well, it is confirmed that Scotty does have mono. He continues to have fevers & swollen lymph nodes so bad that he can't move his neck. They ended up giving him morphine to ease his pain last night. It seems as though we take 1 step forward and 3 steps back. Were all doing our best to stay strong & positive but, I have to admit it's wearing on us. He wants to go home so badly & yet has another set back. I told the infectious disease team that Scotty has always been very healthy and in 1 yr it has all changed. I believe God has a plan for Scotty we just don't know what that is right now.

It's so hard to believe how much our lives can change in one day. Just looking back a few months ago & where we are now. I want to see the light at the end of the tunnel but, it's still dark. One day we think it's open & the next day it closes. I don't want to sound negative I just want to be done with this nightmare. I feel like screaming "MERCY, MERCY, MERCY!" "Please stop we can't take anymore." Sorry, I had a moment there and it had to be said. "He will get pass this, he will be well soon, & we will all be together soon as a family." Amen

Just another quick update

Scotty's surgery has been postponed. He has not been feeling well & his lymph nodes are very swollen. They ran some labs today & they are testing him for swine flu too. They won't do surgery until the swelling goes down in lymph nodes. Scotty is doing his best to remain positive & so are we. Unfortunately, the 2 who are suffering are Kierra & Kellie. They want us all home so badly that it really is effecting them emotionally. I think after this is all said & done we will definitely have to do more as a family. My heart hurts & emotionally I am drained. We all feel the same I'm sure.

Surgery #6 on Tuesday.

Scotty received a surprise visit today from his good friend Ronnie. I don't think anyone knows how hard it is to be in the hospital for this period of time. Having someone call or come visit truly lightens up Scotty & our day. The day's drag on & during the evening you never sleep. In a time like this you learn who your family & friends are & how much you mean to them. So, many people have helped us with dinners, gifts, etc. It can get really expensive eating here at the hospital everyday & plus you still need to feed the rest of your family at home. We are grateful to those that have kept in contact or who have visited with us during this ordeal. We feel so loved & are blessed to have you in our lives.

Scotty is scheduled to have surgery #6 on Tuesday & if all goes well we can go home Wednesday. Scotty will continue to be closely monitored because, the shunts have a 50% tendency to fail within the first year. I hope we don't fall in this category. I will quit rambling now & will update again soon.

Jensen Family Time

Kierra & Kellie came up to visit Scotty today & we spent the day together. Scotty was surprised to see his sisters & smiled big when they walked through the door. It has been 4 day's since they saw him last & they have missed him so much. It was a good day today we even had visitors. Melissa Williams, Mindy Ortiz, & Dawn Bingham came to visit us. "Thanks for the basket of gifts, games, magazines, & etc ladies." I really enjoyed having them here it was nice to catch up on the outside world & hear about work. My family truly appreciates all the prayers & continued support. The Jensen family is stronger than ever & we will continue our fight.

XOXOXO to everyone following our story.

Scotty doing well after #5

In this picture here with Scotty is Rex, Avery, Tank, & our kitty Jerry. (He misses them dearly.) Scotty received a special gift from his Aunt Suzie & Uncle Ric that he absolutely loved & it made him feel better after he got out of surgery #5. She made him a blanket of his favorite Team Oakland Raiders.

Surgery #5 will take place today.

Surgery # 5 will take place in the O.R. today about 1 or 2 p.m. If you haven't heard already Scotty developed a staph infection & it has shown growth on his shunt as well. So, to make a long story short they need to pull the shunt out & treat him with antibiotics & Vanmyocin until he is free and clear of his bug. He went through a lot yesterday & yet remains the toughest kid I know. It started by them putting in pic line, than needing a urine sample by catheter, & then they poked his head with a needle to get brain fluid. Scott and I feel helpless as parents right now. You can't take his pain away & you have to be the one that has to tell him he has to do these thing to get better. It just doesn't seem fair for any of us. Kierra & Kellie are going through the emotions just as bad. They are having to take care of the animals, the house, & still go to school. I admire their strength & support through all of this. I love & miss them both more than they know. I can't wait until this is all over & we are together again. Kierra & Kellie I am sure you are both bummed just as much as Scotty is, about not being able to see New Moon like we had planned. We will see it though just as soon as he is well enough. Our goal is to be home by Thanksgiving before that would be a blessing.

Thursday's appointment turned into emergency surgery.

Scotty woke up Thursday morning nauseated, in pain, and his incision was swollen. We immediately went to PMC to take Scotty in for CT scan & proceeded to his DR. appointment. I knew judging by Scotty's incision being swollen that he would have to have the shunt. What I didn't know is he would have to have emergency surgery right than. Dr. Brockmeyer advised that he was going to have to reopen his incision & drain the fluid. He said there is a leak & he would need to do surgery on that as well to repair it. The surgery took 3 hrs and when all was said and done he said Scotty did well & that it didn't look like there was an infection but, he was taking cultures and would watch it to see if anything occurs. Unfortunately, Scotty did have an infection where his original incision was after 48hrs the cultures showed he had developed a staph infection & they started treating him with Vancomycin. They also had to get more cultures of from the incision of where the shunt was placed. This meant they had to draw fluid from the top of his head & I cannot put into words how awful it was to watch. Scotty continues to fight to get well but, he has had a fever of 103 and has been nauseated. They have decided at this time to hold off until Monday for surgery. They want Dr. Brockmeyer to make the call as well as continue watching the cultures that they took from his shunt to see if, anything grows. We continue to pray & hope that he will not need another surgery & that he will get better soon. He did get a visit from his little friend Lauren on Saturday. She definitely is a fighter herself & brought a smile to Scotty's face. Lauren is the daughter to a friend of mine named Rushell & her husband Keith. They brought us some magazines, Raider stuff, & apples. They have had to spend a lot of their time at PMC hospital & know how tough it can be. We appreciated their visit & their hospital tips.

Mj this is it

Took Scotty to see Michael Jackson this is it on Monday November 2nd. Kierra, Kellie, and I played air hockey against each other before the movie and I won! However, the following day my arm was very sore. We all loved the movie & Scotty couldn't stop himself from singing along with MJ. I noticed that after the movie he was completely wore out & suspected that he may need to have the shunt placement but, we were all doing our best to remain positive.

Admitted back in for surgery #4 his diagnosis is Hydrocephalus shunt placement

Scotty woke up this morning nauseated and in pain. When we looked at the back of his head was swollen said it all. We knew he was going to need the shunt. Dr Brockmeyer admitted him in for an emergency shunt placement & also had to go back through his incision to drain the fluid and repair a leak. He said there doesn't look to like there is an infection but, would send it in to be tested for it anyway. Here is a picture to give you an idea what a shunt is and how they place it in him. They had to do 3 incisions this time. On the top of his head, behind his ear, and his stomach. He always seem to make the best of the situation he asked the Dr " can you just put a zipper on the back of his head." "So, you don't have to keep opening up my incision." Scotty comes up with some of the funniest things and he always manages to get a smile or laugh out of it. He is sleeping right now and I am getting sleepy myself I think I am going to call it a night. Good night!

Scotty get's to come home! Thank You Dr. Brockmeyer!

Dr. Brockmeyer says Scotty can go home but, needs to come back on Thursday for another CT scan. He may still need to have the permanent shunt but, Dr is willing to give him another week to see if ventacles will start working more. Let's pray that it does but, for now we are all home together and can get back to some what normal. Before we left the hospital Scotty wanted to get a picture with the Doctor he say's saved his life. We agree Dr Brockmeyer is amazing and we are grateful to have him as our surgeon.

"Not out of the woods just yet."

Day 9 we are still in the hospital w/Scotty. This week has been quite the roller coaster ride. Scotty does well one day and not so great the next. He is being monitored very closely by the NTU unit. They clamped his EDT on Monday and are watching to see if Scotty' brain will be able to handle the fluid that is in his brain with out the EDT. If, it doesn't he will have to have surgery. They already did a CT scan yesterday and that showed a little bit of swollen glands but, they want to give it more time they will do another one on Friday. Today Scotty got nauseated, is very tired, and not eating. This is hopefully a down day and we are hoping he feels better this afternoon. We will know on Friday if Scott will have to have surgery to place a permanent shunt and that surgery will be on Monday. "Praying for the best and hoping for another miracle."

Scotty's MRI results are back!!!!

TUMOR is GONE!!! Now just the recovery part and CT scan on Wednesday or Thursday to make sure that they can remove the EDT. God Bless!!!

Scotty's 2nd & 3rd Surgery

Scott was scheduled for his second surgery on Monday October 19th at 11a.m. He was really nervous this time around because, he knows more of what to expect. They have asked that we go in at 7a to check in & have his MRI than from there surgery. Scotty's surgery was 6 hrs long and he did well through his surgery. He didn't seem to be recovering as well though he was sleeping a lot & getting dizzy. Dr. Brockmeyer is concerned from the CT scan it shows that he has 2 pockets of air in his head and needs to place an EDT in to drain his brain. On Thursday morning he came in to tell us that he is actually going to have to do another surgery on Scotty that the CT scan shows there is still more of the tumor. He doesn't want to put it off another 3 months knowing that it is the tumor. So, Saturday Scotty had to have an emergency surgery. Which he did very well with and is making a great recovery. They have come into clamp his EDT so we are just crossing our fingers that they will be able to remove it soon. We are also still waiting to hear back from the MRI they did on Sunday after his 3rd surgery. We are all praying that we get good news from Dr. Brockmeyer.

Scotty's Birthday & his 3 month check up

September 29th Scotty turned 11 years old. Since he can't play football he has asked us for a guitar. How could we say no to that right? My family has a lot of talent you never know Scotty could have a real talent for music. Scotty was so surprised to see that he got the electric guitar on his Birthday he is a strong kid. On October 5th we went in for Scotty's follow up MRI and on October 8th we got the results from Doctor Brockmeyer. He said that the tumor was still there that when he did the first surgery that he went in blind with all the swelling. Now the swelling has gone down he can see that there is a lot of the tumor that still remains. He scheduled Scotty to have another surgery on October 19th. Not the news that we were all hoping to hear. We made sure that this week we would do a lot of activities as a family. My heart breaks as a mother the first thing any mom wants to do for their child is make it better and I can't do that. He is scared and hasn't been sleeping well since we got the news.