Billy LaRose Charitable Fundraiser

Sat. March 24, 2012

Breakfast 8:00 AM- 10:00 AM

With Silent Auction & Raffle

*Do not need to be present to win

Silent Auction during breakfast & ends when raffle begins @ 11 AM

Roy City Hope Community Center

5051 S. 2000 W. Roy, UT 84067

Adults $5 Children (under 12) $3

To purchase breakfast & raffle tickets in advance or for any inquiries please call:

Sandi LaRose (801) 782-1005 Becki Porter (801) 675-1336

Mandi Platt (801) 695-7757 Angie Jones (801) 388-7723

Jen LaRose (801) 686-2776 Cindy LaRose (801)648-8025

Connie Waite (801) 710-5036

*Donations can be made at any America First Credit Union to the Billy LaRose Charity Fund

February

Once again we went to Salt Lake, Billy had his normal CT Scan and then we went to see the surgeon again. We were nervous because this appointment could be the difference of having a permanent shunt put in or not.

Again, no change in the CT Scan or ventricles, but we were somewhat shocked at the difference in future treatment the doctor suggested. In January he told us if the hydrocephalus never went away even though it is mild, Billy would most likely never recover 100%. He said Billy would probably get to 90%-95%, but with the extra pressure he would never be able to get over that hump. The doctor said the shunt would relieve the pressure and allow him to be back to normal. But after discussing Billy's current Hydrocephalus symptoms, which are fairly mild, he decided he wanted to wait on the shunt. The surgeon didn't feel like the benefits of the shunt out weighed the possible complications of a shunt at this time. He told us to go live our lives and if Billy's symptoms got worse to come back in. I actually hated this advice more than "wait 4 weeks and come back for another CT". Don't get me wrong I don't want Billy to have another surgery and have a permanent shunt if he can avoid it, but I also don't want him to live the rest of his life at 90%. Billy's 38 years old and has a very long life to live. Honestly the doctor telling us to just go and live life like we did before the aneurysm scares me. I'm not usually a worrier, but this advice leads me feeling unsettled. I'm just not 100% sure this is really all over. Billy obviously still has some recovery, but overall he's doing great for amount of time that has past. My gut tells me to be very watchful and stay on top of Billy's symptoms, but I honestly don't know if that is me just being scared or pro-active.

I know there is no way to know for sure what the future holds, therefore Billy may still need another surgery for the shunt, but I have been trying very hard to live life as normal as I can.

In the last 9 months our family has experienced many trials. In May I had back surgery and had a NO bending, pulling, lifting and twisting restriction for 3 months. Logan had an out patient procedure for some digestive issues, then Billy had brain surgery (14 days in the hospital and continued CT scans in 2012). We also just found out Landon our 5 yr. old is probably going to need surgery to get his tonsils removed. Just when I thought I had learned so much from these experiences, I realize I still have so much yet to learn (more patience and stronger faith). I pray for the strength to be able to continue forward and be a good wife and mother. I pray that I will be able to be there for others in their future trials as they have been there for my family and I. I will "Pay It Forward" when given the chance.

I hope this will be one of my last post because that will mean Billy will never need the shunt, but if that is what it takes to make him 100% I will welcome another trial.

Thank you again to everyone who has prayed for us, helped us give our children a wonderful Christmas, picking up the slack at our jobs and church callings, helping with our children and their activities, etc. I could go on and on, but I don't think my words will every be able to fully express my gratitude and amazement at how giving and caring people are! Your kindness will never be forgotten.

January 2012

We were very eager to go to the doctor at the beginning of January to see if the medicine was working to reduce the fluid on Billy's brain. He had another CT Scan and then we went to the surgeon's office after. Again it wasn't bad news or great news. The CT scan showed no change at all in the size of his ventricles, which is in relation of the amount of spinal fluid he has on the brain. Therefore, he still had hydrocephalus, but it had not gotten worse which is was good. The doctor took him off the medicine and told us to come back in 4 weeks. Those were the words deep down I knew he would say, but oh how I didn't want to hear that. I don't mean to sound ungrateful because we are so blessed to have Billy doing as well as he is only being 2 1/2 months post surgery, but watching and waiting is so hard emotionally. There's no closure, no black and white answers. I learned back in the hospital there were no black and white answers when it comes to Neuro, but as I've said before it's still hard to accept the words, "We just have to wait and see."

The doctor did tell us that even if his symptoms don't get worse, but the excess fluid remains, he still may need a shunt. He said the shunt would help him get back to 100% and without it he may only get to 90%-95%. Bill doesn't want to live the rest of his life at 90% so he has somewhat accepted the idea of a shunt, but like I said before, we will just have to wait and see.

The doctor did release Billy to go back to work part time and to slowly work his way to full time. The doctor suggested about a month of part time, but that we would have to be the judge on Billy's progress and tolerance. Going back to work was harder than Billy thought it would be. He is a salesman and has an office. He is mostly on the phone and computer all day, so he thought a half day would be easy. Sitting for a half day wasn't so bad, but the constant stimuli of the computer, phones and trying to process multiple things at once was very difficult at first. Everyone he works with was great and really tried to help him as much as they could. They were very supportive of him leaving half day and going home to rest, which took a lot of stress off of him. As January continued Billy got stronger physically and mentally. He continued to have pressure in his head, but it was manageable and slowly lessened.

December Progress

Well so much has happen since I last updated the blog. During December, Billy continued to rest and sleep a lot, but gradually would stay up for longer periods of time. He slowly gained more endurance and strength and was able to handle more stimuli than before. He began to do some walking like the doctor wanted, but it was harder than he thought it was going to be. He is very strong and determined so he worked hard and by Christmas Day he was able to go to church for the first time since this all happend and sit on the stand. It was a wonderful day.

Thanks to all of our wonderful friends and family we had a wonderful Christmas. Thank you to all of you who dropped off goodies, cards, presents and food at our door and most of all for your prayers. This Christmas was extra special because we felt so blessed to have Billy here with us and that he was making so much progress. I believe that Billy's life was spared because he still has many things left here on earth to do and I'm so thankful our family has been given that gift.

In some ways this whole experience has been a blessing. Once you are faced with such a major life changing event, you view life differently and want to really live each day like it was your last. Life is so precious and can change so quickly. Remember to tell those important to you how much you love them EVERYDAY!!

Follow Up Appointment

So today we headed to Salt Lake and Billy had a CT scan and then we went to see the Neurosurgeon for our first follow up visit since leaving the hospital. The doctor was overall please with Billy's progress. The doctor said he was doing much better than most people at this stage. He said that Billy is no longer at risk for a re-bleed which was really great to hear and that he didn't have any restrictions on how much weight he could lift (If you forgot, when he came home his instructions were to pick up nothing heavier than 10 lbs.) The doctor wants him to start exercising about 45 minutes a day (walking or riding a exercise bike) and slowly begin doing things he did before as he feels up to it. He said he could start driving, but for the first couple of weeks I have to be in the car with him until I feel like he his ready to drive on his own (He said I should treat him like he just got his permit, lol. Now I have 2 permit drivers, Billy and Logan!!) So that is the summary of the good news!!

Now the not so good news is that Billy has Hydrocephalus. The following are details about Hydrocephalus that I got off of a Neuro website which explains it better than I could. "Hydrocephalus is the buildup of too much cerebrospinal fluid in the brain. Normally, this fluid cushions your brain. When you have too much, though, it puts harmful pressure on your brain.

There are two kinds of hydrocephalus. Congenital hydrocephalus is present at birth. Causes include genetic problems and problems with how the fetus develops. An unusually large head is the main sign of congenital hydrocephalus. Acquired hydrocephalus can occur at any age. Causes can include head injuries, strokes, infections, tumors and bleeding in the brain. Symptoms of acquired hydrocephalus can include

Headache
Vomiting and nausea
Blurry vision
Balance problems
Bladder control problems
Thinking and memory problems

Hydrocephalus can permanently damage the brain, causing problems with physical and mental development. If untreated, it is usually fatal. With treatment, many people lead normal lives with few limitations. Treatment usually involves surgery to insert a shunt. Medicine and rehabilitation therapy can also help."

So this explains why Billy still feels so much pressure in his head and why he wants to sleep 12 hours or more a day. Fortunately, Billy doesn't have all of the symptoms, but he has enough that the doctor prescribed a medication that will prevent his body from producing so much spinal fluid. The hope is that if his body doesn't produce as much, his body will then be able to catch up and eventually start reabsorbing the excess fluid. He has to go back in 4 weeks to have another CT scan and then see the doctor again. If he still has hydrocephalus then the doctor said we may have to start considering putting in a permanent shunt. This would require another surgery (nothing as major as before) where they will place a tube in his head and then thread it under his skin down to his stomach where the excess spinal fluid would drain and then be excreted by the body. We are praying very hard that this medicine will work and then Billy's body will begin to work as normal so he doesn't have to have a permeant shunt. Obviously it's not the end of the world and people live normal lives all the time with shunts, but I really just want to avoid this if at all possible. Don't get me wrong I feel so blessed to have Billy alive and well, but this would just be one more thing! The doctor also said he could not go back to work until after our next appointment January 3, 2012 and if all goes well he will still have to start back part time and then build up.

So after today I have mixed feelings. I'm very happy he is doing so well and overall doesn't have any deficits, but I really wasn't expecting the hydrocephalus so tonight I had a little break down. I'm trying really hard to be strong and positive, but I guess sometimes a girl's just got to have a good cry. After 6 weeks of this you would think I would be more prepared, but I really wasn't expecting this because of how good he has done. I will just keep praying and I know my Heavenly Father will get us through this and one day we will look back and be thankful for this growing opportunity.

Updates

It's been a while since I've posted anything for many reasons. First of all, I thought if I posted everyday that Billy is making progress, but sleeping about 12 hours a day it would get pretty boring. My mother went home about 3 weeks ago so that leaves everything for me to do by myself (Oh how I miss my mom, but she needed to get back home. I am so grateful for everything she did for us). Plus I've started going back to work at the dental office and at Kohl's as much as I can and unfortunately homework, school projects, laundry, dishes and night time rituals never stop and with 4 kids you can imagine how crazy my nights are. Needless to say, I've been a little stressed and when night time rolls around I'm so tired that I usually pick sleep over blogging. Then last Thursday Landon woke up with a fever, threw up at 4am and then Karsyn and Paige got it too. (Now honestly, can the LaRose's have anymore fun than we already are???)

So the last 3 weeks or so, Billy has continued to make progress. His short term memory is getting better and he is getting stronger all the time. He's trying really hard to get back into normal life little by little. He went to Paige's basketball game last Saturday and he was glad he did, but he was really tired once he got back. Then Saturday night we decided the entire family needed a break so we all went to the movies. Billy really wanted to go, but hesitated as well. He did end up going with us and he tried really hard to enjoy himself, but it was really hard on him physically and mentally, but it was another step to recovery. One of his big problems right now is his sleeping is all messed up. He sleeps all day, gets up in the late afternoon and then can't go to sleep again until like 4:30am so the cycle continues. It's really hard for him to stay awake all day, but he is trying really hard. His head doesn't hurt that much, but he still has a lot of pressure in it, which is uncomfortable. His other complaint is that his entire body aches. He said it feels like when you have the flu, and it only goes away when he takes ibuprofen. Speaking of medicine, he is doing really good in that regard. He hasn't taken any prescription pain medicine in a week and is managing with Ibuprofen alone. Overall, we're 6 weeks post surgery and he has made amazing progress. I'm very proud of him and I know he will keep working hard so he can finally have is life back!!

Thanks again to everyone for their thoughts, prayers and kind gestures. Also, we have been given a couple of anonymous gifts so if any of you reading this is responsible for one of those, Thank you so much!! As hard as this has been, I have to say we have been blessed in so many ways!!

Updates

Well things are still going well. Billy is making progress and getting stronger each day. He is still sleeping a lot because his head still hurts and his body aches a lot. He feels like time is going slow, but he has made remarkable progress in 3 1/2 weeks. He still says everything tastes like grease except for fruit so he doesn't get too excited about eating, but he makes himself eat something so he can regain his strength. He also remains sensitive to light, sound and touch, but he has been able to tolerate it a little more each day. Overall I think he's doing really good. Tomorrow I'll give you a summary of his cognitive evaluation. Thanks again for all you prayers, thoughts and support.

Monday, November 7 - Thursday, November 10, 2011

So it's been a while since I updated this, but I didn't want to bore you. Overall the past 4 days have been pretty good. Billy has done a lot of sleeping and I mean A LOT of sleeping. He definitely needed the sleep considering that he was woke up every single hour (even through the night) the entire 12 days he was in ICU and it didn't get much better in the step down unit. I told him not to come down the stairs without someone knowing since he's on pain meds. and is so weak, but there have been at least 5 or 6 times I've turned around and there he's in the kitchen or living room. I've decided this is not a battle I want to fight because there are going to be plenty of others. Overall he is walking around good and really steady. It was a huge blessing that Billy was so strong before this happend, which has helped him be able to get around by himself so soon. He's been able to shower and get dressed by himself, but after he is wiped out and has to take a nap. Taking a shower and getting dressed is typically how most of us start a normal, busy day and yet this task is a huge accomplishment for BIlly at this stage of his recovery. This is definitely humbling and reminds us how much we take for granted. Good health is such a wonderful blessing!!

Billy has been able to watch some TV, but again his brain get tired very quickly. About a 2 hour stretch of talking and watching TV is about as long as he can do right now. It's hard for him to process everything going around him at the same rate he could before the surgery. The doctors tell me he should eventually regain all of this but there is no way to know exactly how long this could take. We have an appointment next week for a cognitive evaluation. Billy can carry on normal conversations and he is remembering more all the time, but like I said he just doesn't have the endurance that he needs. The cognitive therapy will teach him how to strengthen his brain and be able to use his brain for longer periods of time. Physically he is able to move the way he needs, but is limited due to his strength and the doctor's instructions were for him not to pick up anything heavier than 10 pounds and no pulling or straining at all. I look forward to the cognitive evaluation because they will be able to teach me things that I can do to help him as well. One of the other things that Billy is experiencing is at certain times he is hyper-sensitve to light, sound and touch. Sometimes he can tolerate it very well and then in a matter of minutes he needs it quiet, wants the lights off and he doesn't even want me to softly rub his back or touch him at all.

Billy is getting very frustrated with the fact that he's in bed all the time. He wants to be able to do the things he used to do and I tell him he will, but it will just take time. He really doesn't like to hear this and I totally understand how he feels. When I had my back surgery in May after 2 weeks in bed I was going crazy. In theory it sounds so nice to just lay in bed, sleep and watch TV, but in reality it's only nice for about a day or so. He can start walking when he feels like it so we are trying to get in some kind of schedule where he can start walking a little bit at a time.

Today, I was going to Billy's work to pick up something up and he insisted that he needed to go get something in his office. I told him no but he kept saying he really needed to go. I finally gave in so we headed to his work. Thankfully it's very close because he can't ride in the car very long without getting sick. When we got there everyone was so excited and shocked to see him. He talked to a few people, gathered some papers and then decided he needed to turn on his computer to check his emails. Again, I sound like the nagging wife and told him he shouldn't be doing that, but he insisted he had to. It didn't take long for him to start feeling bad so we left, went and picked up Logan and headed home. We had probably been gone about an hour round trip and Billy was truly exhausted. He had to go straight to bed and nap for an hour before he could even think about having dinner. Typing the word "dinner" reminds me of something else that he is experiencing. Since we've gotten home he says everything taste the same or he can only taste the grease or fat in something. The other night he wanted to some chips so I got him some and he said all he could taste is the grease. He's not eating a lot to begin with and now that everything has such a weird taste he is having to make himself eat. I think this is a combination of the medicine he is taking and the fact that he did have brain surgery, however I know it's depressing when you are hungry and craving something, but no matter what, it tastes gross.

The next 3 weeks and possibly longer are going to be challenging for Billy because he is more alert and feeling somewhat better, but he still has so many restrictions. Billy now needs prayers for him to be able to handle this long recovery process and to be a good patient!! He goes back to the Neuro-Surgeon December 6th so until then he is very limited to what he can do. Considering it's not even been 3 weeks since the aneurysm rupture, Billy is doing remarkable.

Thanks again to all of you for your thoughts and prayers. Thank you to everyone who has brought us dinner, picked up and dropped off our children, helped us with things around the house, taken over our church callings and picked up the slack at our jobs, etc., etc. The kindness, selflessness and sincere concern by so many has truly been overwhelming. I keep telling my mother and Billy that we have the greatest family, friends and neighbors in the entire world. I honestly feel extremely blessed in so many ways. I feel like my "thank you's" will never be able to really express how I really feel, but until I come up with something better or get really really rich, I'll have to stick with THANK YOU, THANK YOU, THANK YOU!!!!

1st Day at home (November 6, 2011)

Well Billy's first day at home went better than I expected. I got up 3 different times to get his medicine and check on him, but over all he rested okay. He did almost give my mother a heart attack in the middle of the night. Around 2:30am he got up without me knowing it because he though he heard Paige crying, therefore he went into Landon's room (I don't know why he went into Landon's room looking for Paige, but that's what he did) My mother has been sleeping in Landon's room just so you know. So he goes in Landon's room turns off the fan and pulls the covers back off of my mother in which she about jump out of her skin. He says, "where's Paige?" and my mother says, "She's downstairs in her room.". About this time I woke up and he told me "I think I just scared your mom." He then proceeds to tell me he was looking for Landon. (and just 2 minutes earlier he told my mom he was looking for Paige) I have laughed about this over and over today because I can just imagine my mother jumping and looking up at this man standing over her. I know I would have been scared to death as well, but this is just one of the many funny things Billy has done through this whole process. He has said so many funny things that I haven't put in this blog, but I still might just so I can remember and Billy can read one day. As scary as this whole process has been I have had to keep some humor so I don't go crazy myself.

Billy slept on and off most of the day. The headaches go from mild to pretty painful all throughout the day. We are trying to manage them with pain medicine and salt tablets to keep his sodium levels high. (Keeping his sodium levels high have been a high priority throughout his hospital stay and for the next week here at home as well. Keeping his sodium levels up helps keep the fluid from building around his brain.) Today was a pretty good day!!

Welcome Home Billy!!!

As I got up this morning and began to get ready, we still had not heard about whether we would be going home or not. Finally around noon the doctor came in and said Billy was doing good so they would be discharging him in the next couple of hours. I wasn't completely surprised, but kind of disappointed because as much as I want to come home, I thought it would be good for him to be monitored for a couple of more days. Obviously I'm not a doctor and they felt like he was ready. They told us he would continue to have headaches for days and possibly weeks to come and there is no way to know when they will stop. I knew this, but my question was at what point do I call or bring him back in, if the need arises. Again there is no straight answer for this question either. They told me to monitor his symptoms and cognitive behavior, but to go with my intuition. I hate this answer even though I expected an answer like this.

I began packing up stuff and making trips to the car because over 14 days we accumulated a lot of stuff. When it was finally time to leave they brought in a wheel chair and helped us get on our way. Billy had not been outside for 2 weeks so it was refreshing and weird for him at the same time. He was really making sense, but then he looks at me and says, "Do you want me to drive?". Oh coarse I said no and reminded him not only was he on pain killers, but said remember you just had brain surgery 2 weeks ago. Billy then says "I don't think it's hit me that I really had brain surgery." I had told him this before but he has been so in and out of it since this whole thing started that I truly don't think he really understands everything that has happened yet. I'm not sure if he will ever completely understand. He was the one going through all the pain and confusion, etc which I wish he never had to endure this at all. However, I've been watching him go through all of this and not really being able to help him or prepare for the next emotionally roller coaster ride. He keeps telling me he's fine and everything will be fine and deep down I believe he will be recover completely, but I know we have a very long road ahead of us before that happens. He knows he's weak and realizes sometimes that he gets confused, but he really doesn't understand that it's going to take longer than 2 weeks to be back to normal. I know I'm rambling and I hope I have been making sense.

When we finally got home he was feeling pretty bad so he went straight to bed. After about 3 hours he came down stairs and was talking and ate dinner. He visited for about an hour and then it was time to go back to bed. He gets tired very easy.

So heads up to all of you. As I've said before some of you will get the opportunity to talk with Billy in the weeks to come and you will probably leave that conversation thinking he's back to normal and doing so great. He is doing great and he will be getting stronger everyday, but I warn you he might not remember the conversation or all of the details either. I can't say for sure when this will happen and for how long this will last, but I do know it will happen.

So now that we are home we are beginning a new journey to recovery. I know at some point he will be the BIlly we all love and I pray it will be faster than I expect.

Thanks again for all your prayers and support we would not have been able to make it this far without all of our family and friends!!!

Friday, November 4, 2011

Late Thursday night Billy's head started to hurt really bad. All through the night he was in pain and didn't get much sleep. This was a big contrast from Thursday day, which is so hard to understand how he can go from feeling good, talking and laughing to being in so much pain he doesn't want to be touched, talked to or have any light on. This pain carried over into Friday. Around noon the Surgeon came in to see how he was doing. He decided they needed to do another lumbar puncture to see if the pressures were rising in his head again. As we were waiting for them to come in to do the lumbar puncture, around 1:30 Billy woke up. He wanted to eat, began talking and got up out of bed to brush his teeth and said he felt so much better. You think I should be used to this up and down already, but it still blows my mind. Billy had been given the same type and amount of medicine he had been getting for the past couple of days, so there was nothing that we could contribute to him feeling good all of a sudden. This roller coaster of good and bad times truly exhausts me mentally and physically. I am very happy Billy is doing better and has moved out of ICU, but at the same time the thought of him coming home scares me to death. I just really don't want to go home and then end up back at the hospital.

Billy continued to have a good day until around 6:00pm his pain started to come back. This time it only lasted for about 3 hours and then he was feeling better again. So as we are going to bed I'm wondering if they will let him still go home tomorrow and I really didn't know what to expect as morning comes......

Great Progress (November 3, 2011)

Today was another good day. I was some what surprised when they came in and said they were moving Billy out of ICU to a step down room. He is now in Neuro Acute Care Unit (which is basically a regular room). He walked a really long way today and overall was feeling pretty good. Late afternoon his head started to hurt worse so they are trying to manage the pain because he's still got a while before his headaches go away completely. The other good news is that Karsyn and Landon got to come see him tonight. This was the first time they have seen him since the rupture. They were so excited and so was Billy. Billy wanted them to snuggle with him, but they were a little hesitant at first because they didn't want to hurt dad. Eventually they got up in the bed with him and snuggled with their daddy and I got some of the sweetest pictures.

Billy's primary doctor came in and said he thought Billy was doing really good and if he continued to do well, to plan on taking him home on Saturday. (Yes this Saturday) I have very mixed feelings about this. I am so ready to leave the hospital, but I am scared to bring him home too. I just worry something will happen once we get home and we'll end up back here, but I know I just need to have faith. If he gets to come home Saturday the doctor said he needs to come back to see him in 4 weeks for a follow up, which also means Billy cannot work, drive or really too much else until his follow up appt. RIght now Billy doesn't feel like doing too much because of his pain and weakness, but at the same time he thinks by next week he will be up and somewhat back to normal. I told him that all he can do is rest, but I know Billy and he will try to push it. The fighter in him is what is going to help him get better faster, but I just want him to take it slow and steady. I keep telling him everything is under control, but he worries and wants to be able to be back to normal. So as I'm rambling, what I need you all to do is pray that Billy will be able to allow his body and mind to heal and not push it too hard. His mind is clearer, but he is still having short term memory issues and they say that can last a while, but every patient is different so I will have to be the judge when I think he's back to normal.

So like I said, today was a big and great step, but like I've said many times before I'm not counting on anything for sure, but taking one day at a time.

Wednesday, November 2, 2011

Well today was a much better day. Billy rested pretty good and woke up feeling much better than he usually does. He ate his breakfast and was talking quite a bit and believe it or not it made sense and he seemed to remember everything we were talking about. They were trying to stay on top of his pain medication because once you get behind on the pain medication it's really hard to get the pain back under control. After a nap occupational therapy came in and had Billy get up and sit in his special chair. He sat there for a while and visited with his brother and his wife. Then they decided he could walk to the shower with the occupational and physical therapist who helped him take a shower. This is his first shower since the rupture so he felt like a new man even though he still couldn't wash his hair. He has to wait 24 hours after the staples are removed before he can get his incision wet. When he got back from the shower they took all of his 38 staples out, removed his catheter (hip hip hooray!!!) and took his ART line out of his arm. He now only has two IV's and the leads on his chest to monitor his heart rate. He feels so much better with all of that stuff out of him. After all of this excitement he was exhausted and took another nap. When he woke up his head was hurting a little more than it had during the day, but nothing compared to last night. As of now the night seems to be going well, but it is only 9:00pm. I don't want to sound negative, but I get nervous to be too excited. Overall today was a great day and he made a ton of progress. Hopefully the night will remain low key and I won't have too much to tell you in the morning.

Thanks again to everyone who is praying for us and helping us in so many ways! We are truly blessed.

Tuesday, November 1, 2011

Well today was another interesting day. Billy's mom came to the hospital early so I could get somethings done at home. I spoke with his mom couple of different times during the day and she said he was doing really good. They brought in a special chair and he was able to sit and visit with his mom for a couple of hours and seemed to really enjoy himself. Then around 3pm his head started hurting really bad. When I got to the hospital the pain had intensified a lot. He didn't want to talk or hear anyone else talk. Light was hurting his eyes and he said that the pain was as bad as it was when the aneurysm first ruptured. He also started to have spasms in his lower back as well which is prob. from all the laying and twisting in the bed. The pain medicine wasn't working and he said he couldn't take it anymore. The doctor finally came in and he decided he wanted Billy to have another CT scan. The CT showed that Billy's ventricles were enlarged since the CT they did on Thursday. They think that his pressures were building because the fluid was building up. They were considering putting in another lumbar drain, but decided to try another approach first. His sodium level was lower than they wanted so they gave him a bolus of sodium through his IV and gave him more sodium tablets. They are pushing high levels of sodium because it helps prevent the fluids from building up in his head. The crazy thing is that as much sodium they are puttiing in his body his blood pressure is extremely low as well. The brain is an extremely delicate organ!! They gave him a few other meeds and finally about an hour he started to get some relief. Before bed he was able to eat something and carry on a conversation without getting really sick. So I was totally emotially drained after tonight. It takes so much out of you when your worried about someone and when there's really nothing you can do to help them. I'm trying to remember it's one more day down and were that much closer to recovery.

Happy Halloween (Monday, October 31, 2011)

Today started out rough again. After the doctors did rounds he became restless and angry. He couldn't get comfortable. He wanted the pillow under his head and then out and then in and out. We do this many times a day, but more in the early morning and late at night. He kept wanting to get up and get dressed and wants them to take the catheter out. He was complaining about all the tubes and how bad his neck hurt. He then started to say that no one up here was helping him and he should just go home because it would be the same. Then he kept saying, "I think they keep getting all these tubes and needles out of happy meals." (This is one of those out of the blue statements he makes) I told him that he was getting good care and that we had to stay so they could help him. He was really just angry and frustrated. Once he settled down he began to have a more normal day (not that normal really exists up here). He was able to help occupational therapy give himself a bath and then he walked longer than he has yet, which was really good. Then a doctor from Radiology came in and said they would be taking him down to do a blood patch and an angiogram. After they pulled the lumbar drain out of his back his headaches got worse so they suspected that he had a spinal leak, which causes very bad headaches. (Billy has had a headache since the rupture and they said he will have one for at least 14-21 days, but the spinal headache is much worse and more intense) So for a blood patch they put a needle into his back very close to where the drain had been. Then they draw blood from his arm and inject it into his back. The blood acts like a patch until the body has time to heal the hole. Usually this works very quickly. After the blood patch they did an angiogram to see if he was having any vasospasms. For an angiogram they place a catheter in the upper thigh and then inject dye so they can see all the vessels in his head. During the angiogram they could see that Billy was having mild vasospasms, but they didn't think it was bad enough to treat at the time. It is very likely that Billy will have more angiograms. Depending on many factors it could be everyday, every other day or even 5 to 6 days in between. Again, there is no magic number. After he got back from these two procedures he was in pretty good spirits and the pain was better.

I had already promised the kids I would be home for Halloween so I could go Trick or Treating with them. Billy's dad had volunteered to stay the night. I left about an hour before his dad got here and he took a nap. Bob, Billy's dad, called me around 8:30 and said he just wanted me to know he was having a hard night. He was hurting pretty bad and couldn't get comfortable. This lasted for a couple of hours until finally around 10:30 he went to sleep and slept pretty well.

Sunday, October 30, 2011

I'm sorry if I seem to be repeating myself, but sometimes these days and nights all seem to run together. Really early morning and late evenings seem to be harder for him lately. This morning around 6:30am the doctors do rounds and come in and ask him the normal questions to see if he's confused and he answered them right again. Then right after they left he started asking me, "What are we going to order for the kids?" I said order what. He said, "They want to know what we want to order from Subway?" I told him we were in the hospital and we didn't have to order Subway. He thought about it for a second and then said ok. Then about 10 minutes later he said, Linds, Linds, we need to hurry and order they are waiting." I again explained where we were and what was going on. He did this a couple of more times then finally dosed off to sleep. When he woke up he was better and talking pretty normal. I hadn't seen the kids since Wednesday so Billy's mom and dad came up to sit with him so I could go home for a while. I was able to go home and get some stuff done and spend some time with the kids which was good for me and them. While I was gone, they said he did really well and for the most part visited with them and slept, but no major set backs. Becki, Billy's sister came up at around 7:30 to relieve his parents and then I got back around 10:30pm. When I got there he was watching a movie with his sister and seemed good, but he was having a hard time following the movie, which makes sense because his brain just gets tired so quickly. After his sister left he settled in and slept pretty good.

Friday & Saturday

Ok so I many of you have been wondering about Billy and what's going on so I hope to get caught up again. Billy says the days are dragging, which I can totally understand because he's the one in the bed in pain, being stuck and asked a million questions, but as much as I want this to be over the days are going by really fast because of all the things I am trying to get done.

Friday, October 28, 2011

Today was another up and down day. It started out pretty good. Billy was answering all the questions correctly, physically responding to all their request and making sense most of the time. As I have said before they tell me there will be good days and bad days, but lately it's been more like good half of the day and bad half of the day. So Billy is still in pain, but was trying to eat and he got up and walked. He is very frustrated with all the tubes and mostly the catheter, which I personally know is very uncomfortable. He is having a hard time getting comfortable as well. His body is sore from all the laying and all the pokes and stcks he comtinues to get daily. Later Friday night 2 of Billy's sisters and their husbands came up to see him and he was on a roll. He was making everyone laugh. The real Billy would come out, but we would lose him here and there in the middle of what you think is a normal conversation. I can't help but laugh at him because he says some goofy things, but has no recollection of it. That night he was stuck on using Chinese Food as references to all kinds of things. Some of it made sense and worked with a joke he was trying to tell, but others were just out there, so I've learned you never know what your going to get from one hour to the next. This is all normal from what I've been told and he will continue to have short term memory issues for a while, but that he should eventually regain all of his memory.

Saturday, October 29, 2011
Today didn't start out well at all. Around 5:00am Billy was kind of restless and hurting pretty bad. I was trying to help him get comfortable but no matter what I did he was moaning. As I was talking to him he became confused and his head was really hot (like a low grade fever). The nurse came in and I told him that I thought he was acting different and more confused. The nurse told me that was normal and that sometimes patients have dementia spells because they get woke up so often for so long and they get confused. I could see I wasn't getting anywhere with this particular nurse so I just help Billy get back to sleep, but I knew in my gut that something was changing. I know Billy better than anyone and by this time I've been here a week and feel like I know what to look for now. Shift change was at 7am so around 7:30 the new nurse came in and did the same neuro test they do many times a day. Billy answered all the questions right and physically did everything they asked him to so on the surface everything seemed great. I told the nurse my concerns again and he thought it was all normal, but then Billy started to ask me why they wanted him to play football. I told him no one was trying to make him play football, but he was convinced he had a helment on and they were bugging him to come play. BIlly then said, "I think they are confused and think I'm Logan." (I had to laugh about this so I don't cry) I would exlain that he was in the hospital and he didn't have to play football. He would stop and think and then he realized he where he was. Thankfully the nurse witnessed all this and said, "ok I see what you mean' so I'll talk with the doctors." Shortly after this episode he was talking normally again and ate breakfast like none of it ever happened. Then he got really tired and dosed off to sleep.
Ever since the day of the surgery I have held it together really good. I feel somewhat numb and scared to get too excited about his good days because I don't want to be disappointed. I feel like i"m in surveil mode because I not only want and need to be here with Billy, but I still have my kids to worry about (even though my mother is here which is wonderful, but as any of you parents know, you always worry about your kids), bills still have to be paid, etc. , etc. So I have felt like I have to be strong for everyone and life must go on in a lot of ways. Well this morning I couldn't hold it in anymore. I started to feel overwhelmed and closterphobic and like I had to get out of the hospital. While Billy was a sleep I went and walk around the outside of the hospital and cried to my mom. I felt frustrated , sad, scared and thankful all at the same time. After a good hour of talking and crying I felt better. I felt like I could go back in there and face the day. There were still challenges, but I kept pressing on.
Later that evening they pulled the lumbar drain out of Billy's back because they had shut it off 36 hours prior to see how he would do. overall he had done good, but they did suspect that he had some pressure building up because of his confusion, but the pressures weren't high enough to warrant the drain anymore. Billy was glad to get it out because it's one less tube. He also had to have his ART line redone as well. (The ART Line is an artierial line that is similar to an IV. It is in an artery so it takes his blood pressure and it gives them access to draw blood without sticking him so much.) He has a lot of problems with his ART line so they have had to try to fix it with wires and start a new one on the other hand. Overall he's making good progress, but it's very up and down.

Aneurysms

I've had a few people ask me about what exactly an aneurysm is and what causes them so i'm going to share what I have learned so far:

An aneurysm is a weak area in the wall of a blood vesel that causes the blood vessel to bulge or balloon out. When an aneurysm occurs in a blood vessel of the brain, it is called a cerebral aneurysm.

Causes and risk factors for aneurysms are a severe head injury, smoking, high blood pressure, family history and sometimes, but rarely you can be born with a defect. Then there is the spontaneous (basically unlucky) group that have no risk factors, but have an aneurysm which is the catagory Billy falls into. About 5% of the population have aneurysms and never know it because you only show signs if it ruptures.

So If someone has an aneurysm and it ruptures many people die quickly unless it clots or their able to get into surgery asap. Thankfully Billy's rupture clotted very quickly and the reason we know this is 1. he's alive 2. within 15 minutes of the first severe head pain he felt, he passed his neuro exam 100% 3. his hearing came back and 4. his blood pressure was normal. These were also all of the reasons we waited to go to the ER. I believe with all my heart Heaven Father was watching over Billy and our family.

So hopefully this helps some of you understand more about aneurysms.

Updates

I am little behind on my posts as far as day to day so I'm hoping to get caught up tonight.

Wednesday, October 26, 2011
As I said before, I spent the night at home Tuesday night and Billy's dad slept at the hospital. I called Billy's mom to see if she would go to the hospital in the morning so I could get some stuff together and make some much needed phone calls. Billy's mom said he did really good all morning and even walked up and down the hall with the physical and occupational therapist guiding him. Even though it hurt his head, he did great. He then stood at the sink and brushed his teeth so he really made a lot of progress. I finally got to the hospital around 3pm (word of advice: do not talk on your cell phone when you are not quiet sure where you're going. I knew I was headed in the right direction, but I'm pretty sure I took a few unnecessary turns, but I did finally get here.) Once I got in the room, Billy's mom, brother and his wife where there. When he woke up he was like him old self. His head still hurt, but he was talking, cracking jokes and had us all laughing for about 3 hours. We even took some pictures and he really looked good considering he had brain surgery 3 days prior. After they left, Billy began insisting on having his cell phone. I told him he didn't need it and to rest, but he kept insisting, so I gave in. He started checking messages and called his sales manager at work. He is having some short term memory issues, which is totally normal and at sometimes really funny.

Shortly after he got off the phone, our bishop came by and Billy talked with him for a while. Again, most of it made sense, but he would repeat himself on certain topics, but had no idea he was doing it. Then my mom brought all the kids. I went to the waiting room to see Karsyn & Landon while Logan & Paige went to visit with their dad. Paige made him chocolate covered strawberries and they all made him "Get Well" Posters. By now Billy is getting pretty tired and sleepy so once my mom and the kids left he was trying to settle in for the night. He started to get a little confused and asked me lots of funny questions. (I have to put them in here so I don't forget and so he can read about this whole experience when he's better) First, he asked me what I was doing like 3 times, then in between he would ask me if I had his phone. I would tell him and he would say ok. Then about 10 minutes later he ask me if I knew where his phone was and he told me he didn't want the kids playing with it. I assured him I had his phone and we were at the hospital and the kids were at home so they couldn't play with his phone. Then I was helping him get comfortable in the bed and he tells me, "I don't feel very good, but I still think I can go to Logan's football game tomorrow." I told him he couldn't leave the hospital, but again he insisted that he would feel better tomorrow and he was going to the game. I just agreed with him and knew he would forget what he said by morning if not in the next few minutes. After a few more funny questions and comments, he finally settled in for the night and slept pretty peaceful.

Thursday, October 27, 2011
Today was not a great day for Billy. He was really lethargic (sleepy) and said his head was hurting worse today than before. He didn't want to eat and continued to sleep, but moaned a lot in his sleep. Between 10am-11am he got his normal pain medicine, but it wasn't working as fast as he needed it to. So they gave him another pain medication that acts very quickly and usually helps relax him enough for him to go to sleep. Right after they gave him that last medication his heart rate dropped to 35, which is extremely low. They thought it was from the fast acting medication so they decided they would not be giving him that anymore. Well as lunch came and went, he continued to sleep, not eat and was really sensitive to light and touch. He complained about his head and that his neck was hurting really bad again. These are all possible symptoms of swelling or vasospasms. With a lot of prodding he got up and walked down the hall, which got his heart rate up, but it still remained low. Once he got back to the bed, his heart rate dropped again and stayed very low all afternoon. Finally the doctor came in and ordered a CT scan to make sure the brain wasn't swelling. The doctor also said to stop the lumbar drain and see how he did. The CT came back ok and after not draining spinal fluid for an hour he began to perk up. They decided they were draining too much spinal fluid so they were going to half what they had been doing. I immediately saw a difference in him. He finally really woke up, ate dinner, began to carry on conversations and the headache wasn't as severe. The brain is such a complex and amazing organ. Just by decreasing the drain by 5 cc he became a different person. Today, was like one of those days they said I needed to prepare for. We were very lucky and had a good outcome by the evening, but it was definately a trying day emotionally. I'm very impressed with all of the staff here at the U in the Neuro ICU. They are all very well trained and very approachable, which makes a hard day just a little bit easier.

Recovery

So i know a lot of people want to know how long he will be here and do they expect a full recovery. These 2 most important questions are the 2 they can't answer completely. He has made great progress and the doctors say they really expect him to make a full recovery, but they will be able to give us a better answer between day 14 & 21. This to me has been one of the most frustrating things, but at the same time, I totally understand because anytime someone has brain surgery the outcome is so unknown.

Like I said, Billy is doing great, but the reason he has to be in ICU for a minimum of 14 days is because between day 5 & 14 he is at risk for Vasospasms (which is when the blood vessels constrict and cause stroke like symptoms and if not treated within 45 minutes to an hour can cause permanent brain damage) If he begins to have a vasospasm they will take him down to interventional radiology, where they would go through the femoral artery (in the upper thigh) up to the brain and inject a medication to dilate the vessel. I asked one of the Neurosurgery Residents what were his odds of having a vasospasm. He said they rate aneurysms from 1-4 (4 being worst) and Billy's was a 3 so he said he has a 95% chance of having a vasospasm. But like everything in this situation we just have to wait and see.

So if Billy gets out of ICU around day 14, they will then move him to a step down floor (normal room) for 2-7 days before he can go home. So if all goes really well and he's home in 3 weeks they tell me it will probably be about another month before he can go back to work, but possibly longer. (I think I must need to learn more patience. Here's the hint, "It will be at lease 14 days before we can tell you if your husband will be completely ok".) I'm trying to keep some humor is this situation or I will definitely go crazy.

One of the other hard things about this situation is that my two youngest kids, Karsyn & Landon can't see their dad until he's out of ICU, which like I said before, we have know idea when that will be. Time concept is hard at their age especially for Landon. He asked me the other day when dad was coming home. He was also very upset that dad was going to miss Halloween. I told him we would take lots of pictures of them in their costumes and show dad. He liked that idea, but misses his daddy very much. All the kids do and really just want their dad back. It's been hard explaining what is going on with their dad, but it's the hardest when they ask if dad will be ok and will dad still be able to play with me like he did before?? Those are answers that I still don't know myself. I've tried to tell them that dad is doing really good and the doctors think he will be just fine, but it will take a long time for him to be completely back to normal.

The last thing I wanted to tell everyone is that the doctors and nurses all keep telling me the next couple of weeks will be like a roller coaster. It's very normal to have really good days and then really bad days. He can even have 2 or 3 good days and then decline. They tell me to prepare myself for constant ups and downs because unfortuantely this is the nature of Aneurysms and brain surgery. I'm just trying to plan for the worst and hope for the best. One of the biggest advantages Billy has is that he is young, strong, healthy and a fighter. He will work hard to overcome this trial and I truly believe we will be a stronger family because of it.