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.