Some things are coming together

We still have not talked to Neurology, but we did get ENT. They were able to down size his trach so now he can start talking again. He is still quiet and raspy, but will be back to normal in no time. ENT would like to get the trach out soon. Monday he will have another swallowing test to see if he can start eating and drinking, then he will be able to get rid of a lot of the tubes. This was good news, since the first doctor we talked to this morning said he could not get his trach downsized for 7-10 days. I wish they would not talk out of their areas as it sends us all on a roller coaster.

Early this morning Neal accidentally pulled out his nose tubes and IV. They were able to replace the IV quickly, but it took a while to get the nose tube back in. Unfortunately since he cannot swallow and he needs to take his pills. The tube is back in now and he should be getting his pills tonight. He is able to get in and out of bed and into a chair. He had physical therapy in before he could talk asking him about his lifestyle and helping him bathe, if he could talk, man would he have a lot to say. They were just trying to help, but I know he was saying oh please in his head. He was able to send a text message to Ryan and Leslie since they have been unable to visit and I know that made their day. Mom was able to see him as well, which made her worry a little less. Seeing it is much different than hearing about it, I can understand this. I think we can all sleep good tonight!

2 weeks later

Neal is doing ok. He is still off the ventilator. He still needs oxygen. He failed the swallow test and was pretty upset. He will try again on Monday. Currently I am just trying to get answers and am pretty frustrated. I have never heard from Neurology and have not heard from ENT since Tuesday. I currently have signs posted all over the room for the doctors to call me. It is frustrating that no one will call me and they think it is ok to talk to him. Given the fact that he cannot talk, that does not work very well. This morning they told me they are sending him home or to rehab early next week. I am baffled.

He is still writing a little and I am getting better at lip reading. Thanks to the Whitney's for bringing some treats for the family. Neal has said no visitors as of now, I will let you know.

Neal is in the house

Well some folks saw Neal's sense of humor today and some saw him agitated, but it is him. He is completely off the ventilator and doing fine. He has quite a bit of mucous that needs to be suctioned from his lungs, but otherwise he is doing ok. Last night when his Aunt, Uncle and cousins visited he wrote on the dry erase board what had happened asking if they had heard, so he does now know why he is in the hospital. Today he had quite a bit of anxiety from what I hear and I would assume knowing why he is in the hospital is doing it. Because of his anxiety he received some drugs, therefore he was pretty sleepy. He cracked some jokes with others and pretty much yelled as much as he can at my sister and I! I could not be happier to see it. Imagine how dry your mouth would be without water, I do not blame him for wanting the spongy things on a stick (in proper medical terms).

His blood pressure is low again, not as low as last week but the top number is in the 90s. I think it is related to the amount of fluid he is getting taken off in dialysis. They are planning to get him out of ICU as soon as a bed becomes available. The nurses planned to get some tubes removed from him tonight after my sister and I left. He was so anxious to get the tubes out that he told us to go away! I am ok with that if he is happy. I am taking all card and letters up for him to see. Not much else to report, so I guess that is good.

I bought the nurses some Cheryl's cookies and immediately got better attention, sad but true. I will bribe all I can to get him the best care. Today he was watching Animal Planet and yesterday Lifetime.....hmmmmm I am beginning to wonder what the nurses are doing in there! Now don't get me wrong, we have watched Animal Planet once in a while, but Lifetime, are you kidding me. I left the channel for the Indians game on tonight, I hope it stays on and he stays awake to watch a little.

I am not sure where he will be tomorrow, but anyone that is healthy and wants to see Neal is more than welcome. He still has quite a bit of tubes sticking out of him. I will always have a dry erase board in the room if he chooses to write As I have warned others, he is currently infatuated with the time. So that may be the first thing he asks. I am a horrible lip reader (Denise I need you) so if you have problems, ask him if he wants to write. I still have not talked to ear, nose and throat, so I am unsure when he will be able to talk. First he will have to pass a swallowing test so that he can drink. Currently Neal has a feeding tube.

If anyone has any recommendations for home nurses, I am all ears. Thanks again for everyones help, cards, posts and calls. It is times like this when you realize how lucky you are for your friends and family are and how great of a guy Neal is. I would be happy if I had half the amount of people interested in me! Times like these make you realize what is really important in life.

Update: Neal is being moved to 1007a Doan tonight. For any visitors, ask if he needs suction when you get there and if he does call the nurse. I appreciate everyones help. I am excited to see him in the morning. I do not think I gave enough thanks to Suzy and her family for providing me with lunch and dinner for the week. I greatly appreciate it!

There is no looking back now

The trach is in and you can ask anyone that saw Neal, he is a new man. He is now off of the ventilator, his vitals are still good and he is more responsive. He is still on quite a bit of pain medicine though and that is still having an effect. He does still have oxygen attached to his trach. He did not pass the swallow test, therefore he still cannot drink. My sister and I were convinced he was trying to trick us into giving him water. He even had a minute when he was telling me that he remembered what I had already told him once. He is now really asking what time and day it is. He still does not remember anything and probably never will. Neal still cannot talk, but is on his way there. Since he cannot swallow, he cannot eat, therefore he has to have the feeding tube. I think his weight is holding stable.

Neal's tongue also made it's first appearance today. The only way I can describe it is a dental impression of your molars. He bit the right side of his tongue parallel with his tongue. There appears to be a portion missing, however I think what is still there should be salvageable. We are waiting to hear from ENT to get more information.

Neal will most likely be moved out of ICU tomorrow or Friday. He had been on a ventilator for 11 days and it is amazing how he is the first day off. I am unsure when they will send him home and what sort of therapy he will need. Physically he is still very strong for all he has been through.

It is in

Neal had the trach put in this afternoon. He was not as drugged as I anticipated. I have to say I broke down when I first saw it thinking that I had chosen to do this to him and wondering how we got here. Again I ask why. I came home and looked at his phone and noticed some calls around 9 o'clock the day of the accident to numbers 17, 13, not ever a full phone number so I am thinking he was here for 2 hours alone and hurt. I had just talked to him 2 minutes before that. I thought I was over the fact that I was not here, but this released all of those emotions again. If only. I guess we will never know and I do not know how I will ever leave him again. All of these unanswered questions can drive you crazy. I am sure after a good nights sleep I will be fine again. I have had a chance to figure out what my true emotions are. Unfortunately still no answers. I just cannot believe this is happening. I am in total shock.

On a lighter noted... This morning before the trach Neal was very responsive. He wanted to write and his first question was "was there a bombing". I immediately explained to him what had happened to him and that there was no bombing. It is either the drugs or whatever was on tv that day. His next question was when can I go home. I think he is realizing what has happened and wants to move on. This makes me realize the trach, although horrible, was the best decision.

After the trach, I explained to Neal again what had happened to him and that he was going to be fine and we were looking forward to a transplant. He then, I believe said I have already bit my tongue three times (or he was telling me to shutty, I already told him this). I explained this is the first time he had done this and he seemed to be happy with the answer and move on. Later on I called and the nurse said he was watching tv. I said, great the Indians game and she said no the rodeo! I am guessing he fell asleep while he was changing the channel or could not find the remote or he has taken up a new hobby I was unaware of. I also got to see his tongue today. He bit it on the right side from the back of your throat to your lips. I did not have a long enough look to give my professional opinion, but I think he should be ok.


His vitals are good and by the time I left the ventilator was pretty much turned off, with the exception of a little oxygen being pushed through, but he was initiating every breathe. I am hoping by tomorrow he can sit up more and get his restraints taken off. It is much easier to lip read without the tube in his mouth. Thanks again to everyone that is helping us out.

The next step

Today the doctors informed me that they are going to trach Neal. It may happen tomorrow, but we are not sure. After talking to some people and looking at the pros and cons, it is the best option. He will be more comfortable and will be able to talk and move around more. They are concerned that if they try to pull the ventilator again, they may not be able to get it back in if needs it, then we would be in an emergency situation. I had to sign off of on the procedure which was more than I thought. I talked to Denise and other nurses that I have made friends with along with the doctors and it seems as though there really is no decision. I explained everything to Neal this morning and he nodded yes. I am unsure if he really heard me, but I think he did. If Neal was able to comprehend everything I really do feel like it would be a no brainer for him too, but it is much more stress on me having to make that choice. The trach will be much safer once it is completed and he can get out of ICU. The longer he is in the hospital, the more risk he has of infection and given our transplant timeline, we do not want infection. So Neal as you read this weeks down the road, I hope you agree with my decision and you are in a much better place.

At the evening visit, Neal was pretty agitated. I cannot exactly tell what was going through his head, but I knew he was agitated. His blood pressure is fine, but his heart rate was pretty high. I worry about the stress that is being put on his heart, but it is hard to juggle the blood pressure and the heart. When I left the nurse had given him quite a bit of anxiety and pain medicine to calm him down. He is running a fever again, but that has been on and off for days. The doctors tried to remove his neck collar, but had no luck. In order to remove it he has to be responsive and he was not at all. Again, I wish I knew what he was thinking. Hopefully the trach will allow him to communicate easier. I plan to head up there early tomorrow with hopes that he is getting the trach.

On another note, and I know Neal is going to hate this, but the nurse that helped us in the ER the day of Neal's "accident" lives in our neighborhood. I saw a lady in scrubs walking down the street so I decided to literally chase her down (Ryan I did not take my maglight). Turns out it was the wrong nurse, but now I have a nurse resource close by. She did walk me over to the ladies house I was looking for and we had a chance to chat. Everyone seems confused by the compazine. She suggested I call the ER and ask the question. I will try that tomorrow, but who knows if I will get a response. Yes I am a little bit crazy, yet still on earth enough to admit it. I also got Neal's current med list with hopes to send it on to some friends for review. I no longer trust anyone.

I am not sure who is still reading. I am trying to document things well so Neal will be able to read when he comes home. Thank you to those that are helping with the visits, I really appreciate it. I have been able to work 10:30-4:00 because of you. I will let everyone else know when it is time for full on visitors. Unfortunately now, Neal just gets frustrated since he cannot communicate.

Sunday

Neal is doing good today. We removed his restraints while we were in the room at 9am and he was able to stretch and itch. He wrote a little bit for us. I forgot to write that yesterday when he was writing for the first time what he wanted to know was can we move the transplant up? Then he went on to say ask the doctors and Ryan. Denise and I told him one step at a time, let's get him healthy from this first. Today he wrote that he is having some pain in his stomach. His blood pressure is stable now, but still very low for him. His heart rate is still in the 110s. The other question we get from him is he wants water. Unfortunately he cannot have any. We are working real hard to get ear, nose and throat docs to talk with us. We are requesting that they clear him before removing the tube again. His tongue appears to be pretty swollen again which may be related to having to put the ventilator in. Hopefully I will hear from them by tomorrow. Today they do not intend to do anything.

I am going to try to get some people to visit Neal at 1pm this week as the family has to return to work. I really appreciate everyone that has been helping on the visits. It gives us comfort getting some sort of report.