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.