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......