Another great day! Speech pathology came in and put a Passey Muir cover on this trach. This allows air in but not out so that he can swallow, cough, eat and talk. After dying some ice chips, applesauce, apple juice and crackers green he was given an ice chip. He made the worst face in the world but he finally managed to swallow it. But, it turned out he just let it melt in his mouth and aspirated it instead of swallowing. The reason it is dyed green so they can suction and see if the mucus is clear or colored. Unfortunately, his was light green, so some of it didn't make it into his stomach. But, he was able to cough more and we told him to try saying something...and he said HI! It was really raspy, but it was the best sound in the world. Dr. Patel is going to give him until the end of the week to see if he can handle the cover before he makes a decision to move the feeding tube from his nose to his abdomen.

He managed to sleep 4 hours last night with a small dose of Ambien and I think he will get it again tonight. He was much more alert throughout the day than he had been. He was also run through the mill today. Physical therapy came 1st and he sat on the side of the bed for about 5 minutes. They really wanted him to stand but I talked them out of that. I know they are the experts, but it was 2 therapists who hadn't seen him before and didn't realize how weak he really is. His blood pressure dropped again, but not as low as the first time. As soon as they were finished and he was just getting settled in his chair, Occupational Therapy came in to work his hands and arms. He was so tired from the other therapy that he was barely able to stay awake to try the exercises. I think she may try to coordinate with them so they aren't coming back to back.

After all of his therapies he went back to bed for a nap and I ran out to do some errands. When I got back I found out that he took his oxygen cuff off (pulled it over his head), took the pulse oximeter off of his forehead, and was trying to take out his feeding tube. Plus, he was trying to convince the tech (aide) to remove his catheter! I caught him another time trying to remove things, and he stuck his tongue out at me! He was also able to wink with both eyes this afternoon and bent his legs and kicked his stabilizer wedge out of the bed! So he was feeling his oats this afternoon!

Dr. Patel thinks that in a couple of weeks he'll be ready to move to the rehab hospital. The one that he is going to also has a stroke recovery center that concentrates on the neuro aspect along with the physical, occupational and speech therapies. It is an inpatient facility and I don't have any idea how long he will be there but I know the therapy is intense, 3-6 hours a day/ 5 days a week. Once this hospital is contacted, a team will come to Mayo to evaluate him so that they can start working on his treatment plan. The good thing is that it is about the same distance from the condo as Mayo, just in the opposite direction.

When I looked at what he had written this morning, it was glaring clear! He wrote his name with a lower case b, a "dot", and 2 capital Ls. The next set of letters was supposed to be Haven, but it was too hard for him at this time. We'll really start working with the magnadoodle this week also.

This has been another epic update, but you have gotten everything I can think of that happened today. As I said, it was another great day!

We weathered the storm with no problems. There wasn't much damage on the hospital grounds or at the condo. I did see debris on the way home, but nothing really bad. It's still a little windy and we are going to get some of the backlash as the storm moves north, but only got 2.65 inches of rain instead of the 10-15 that were predicted.

Bill had a terrible night. He was awake all night and his nurse said that for the last 3 nights he had been awake every time she came into the room. She didn't mean that she woke him but his eyes were open and aware when she walked in. After staying with him last night I know the reason. Because he can't talk to use the call button, and because he doesn't have good control of his bowels, they are checking him every hour. So, they are keeping the light over the worksink on, and the door halfway open. And both of those shine right in his eyes. The light was turned out and the door was closed at 5 this morning and the room was darker than it had been all night. I mentioned it to Dr. Patel this morning and he said he was going to make sure they kept the room dark. He was also going to give him something to help him sleep. It's too hard for him to participate with therapy when he's so tired during the day.

He did make a little more progress today as far as using his hands and arms. He also swallowed most of his medicine. The nurse that he had today is one that went on our outing with the LVAD and she remembered him. She was very good with working his hands and arms and trying to get him to communicate. She's also the one who got him to swallow.

Speech pathology came in again today and after he was suctioned, she put her finger over his trach collar and he was able to breathe through his mouth. She tried to get him to try to make a sound when she put her finger over the opening, but he was not able to do that. But, she said she thought that a cap could be put over the trach tomorrow. He would still breathe through it, along with "regular" breathing, but it would not let air out. This would make it possible to talk and swallow and perhaps start eating solid food. Dr. Patel wants to take the nasal tube out since it has been in for so long. If he's not able to swallow well, they will have to put a feeding tube in his abdomen. So, that's the major happening tomorrow. He will also have his next biopsy this week, either on Weds. or Thurs.

At Kari's suggestion I bought a "magnadoodle" for Bill. For you with kids, you know what this is. For those who don't it's a magnetic drawing pad. It has a larger stylus to hold and you just shake it to erase it. So no messy markers or used paper. We'll see how he does with it tomorrow.

It's getting late and I had a pretty sleepless night also. I woke up every time they came in the room. They aren't as silent as they think they are!

It's been a good day again today, but not as good as yesterday. Physical therapy came in and he sat on the edge of the bed again and managed to raise his arm to the railing to steady himself. But, that completely wiped him out and he wasn't very responsive this afternoon.

Dr. Patel said this morning that he thought by the end of 3 months he would be OK. He did order some blood for him late this afternoon to see if that would help his blood pressure some. His numbers were OK, but he said it wouldn't hurt to have the blood. The plan for this week is try to get his trach covered so that he can breathe in through it but not out and then he will be able to talk. He's been trying to mouth words some but it's hard to do without using your vocal chords.

Beryl's leading edge has come ashore although the eye is still 70 miles out. We're getting some horizontal rain and the wind can't decide which direction it's going to come from. The helipad is directly below our room and the windsock was blown down about an hour ago. I've walked the halls to get different views of the clouds and rain. Anyone who knows me well knows that it's killing me to be inside during this. I've wanted to be at the beach all day to see the surf. I did go outside for a few minutes this afternoon before the rain started to feel the wind.

I'm staying at the hospital tonight. We're supposed to get 10-15 inches of rain and the mayor of Jacksonville has declared a state of emergency. I brought a couple of changes of clothes and I have enough of my meds to get me through a couple of days. We shall just play it by ear.

All for tonight. Bill is sleeping and I don't think anything will happen tonight.

What a wonderful day we've had! Bill will hate me for putting this out here, but I know all of you will be just as thrilled as we were...he indicated that he needed a bedpan! The PCT was cleaning him up afterwards when Dr. Patel came in and when I told him what he had done, he almost cried. He kept telling me that I didn't know how excited he was! It couldn't have been much more than me!

Bill continued to do "new" things during the day. He had to have a chest xray and after the technician sat him up to put the slide behind him, he sat there with no support and held his head straight up until the tech laid him back on the slide. He also took his glasses off and rubbed his eyes! I gave him my Diet Coke bottle and he raised it to his mouth. Of course it was closed.

All of this was done with his right hand. When he tried using his left hand on the bottle, he had to use both hands and he couldn't get it to his mouth. But, late this evening, his pulse ox probe was moved to his right hand and before we knew it, his left hand was rubbing his nose! I noticed that he wasn't using the right hand as much then so I asked him if he would like the probe on his forehead and he said yes so they were going to change it out tonight. That may have been a big part of the problem with movement!

He also bent and straightened his knees in bed and flexed his feet. He hadn't done much movement at all with his legs until now.

Dr. Patel doesn't know all of this unless he checks with the nurse tonight. He did say this morning that he thinks he's going to be ok. He is wanting to work more on speech pathology and getting the trach capped. He's also talking about puttting a feeding tube into his stomach while we're working on the trach so that it can come out of his nose. He is doing more swallowing and starting to mouth words a little and he's doing a lot of coughing now. Hopefully when they occlude the trach the next time he will be able to do more than cough.

If any of you have been keeping an eye on our weather, yes, we have a tropical storm warning until Tuesday morning. Depending on what the latest is on it tomorrow, my plan now is to stay at the hospital tomorrow night. We aren't supposed to get a lot of wind inland but we are supposed to get lots of rain. And, from the rainstorm we got the other night that I got caught in, my route home floods.

This has been a long update, but we had an eventful day and did lots of good things!

Dr. Patel was quite pleased with Bill's progress since he hadn't seen him for 2 weeks! Bill had a good morning, started off telling me that they didn't take good care of him last night in front of both the day and night nurses...and then his big silent laugh!

Physical therapy came in and he sat on the edge of his bed, with no support but his arms, for about 10 minutes. First time he sat with no support since the transplant! But, his blood pressure dropped to 69/48 and totally wiped him out for the rest of the day. His mind wasn't as clear after that, although there were some clear thoughts at times.

I'm extremely tired tonight. It seemed like it was a very long day after a restless night. So, I've had dinner and updated everyone and now it's time for bed. Goodnight everyone!

Getting ready to head home for the night. All in all he's had a decent day. He decided that he was not going to cooperate with therapy of any kind so we had to have a talk about that. I feel like I'm dealing with a small child at times but he will just ignore the therapists.

After the last ones left I told him he needed to work with them if he wanted to go home, and they were such pretty girls, too. That got me Cheshire cat grin! Shortly after that he pretended to close his eyes and when I told him he was a big faker I got a huge "silent" laugh! It was so good to see that expression on his face!

He's been coughing a lot more today and getting his lungs clearer so that, even though he still has to be suctioned, he's getting more and more up himself. He did tell me that he wanted to be back upstairs instead of down here. I don't know if he's worried that he'll be left alone too much or what. It is a little unsettling since we have to keep the door closed on this floor and the ICU rooms are all glass. But, we shall see how the night goes. I've been assured that they will continue to come in and turn him every 2 hours, even though there is a sign not to disturb between 11 pm and 5 am. So, we shall see what tomorrow brings.

Good Morning! Bill has been moved out of  ICU and down to the transplant floor! He had been moved right before I got here so it was a little shock to go to his room and see it empty and a regular bed in it. I got hugs from favorite nurses as I headed back down, and hugs from favorite nurses when I got down to his room.

He's awake and aware and communicating some. He has winked, nodded his head, squeezed hands and is coughing. He's moving around some now like he's getting uncomfortable so maybe he'll try to shift himself. That's the only drawback to being here instead of upstairs. The nurse/patient ratio is different and this floor doesn't have the patient crane to move him from bed to chair. But, since this is more of a rehab floor, it's understandable.

I asked him if he wanted to look at pictures of the kids today and he nodded, so I think we'll try that and see if he can identify them...especially if they get him to talk some. I don't know when the therapists will get to this floor today. I saw Dr. Yip a little while ago so he should be in before too long.

We are having to keep his door closed now. In ICU there's a special air filter system but it's not down here. So, for at least a week we will have to keep the door closed and restrict visitors so we don't risk infection. Now the real work starts as far as tracking meds and vitals and teaching. But, I've read through my books and looked at all the charts. And, since we had to chart and keep track of things with the LVAD it won't be that much of a hardship.

All for now. I'll let you know how the day goes. Pray for a good one and progress to be made!