Saturday, December 15, 2018

Here is the continuation of yesterday's post...and today's included. 

Yesterday...Dr. Threlkeld was thrilled to see Bill awake and aware yesterday morning. He thinks he's still on the right track with the meds, and it's just going to take some time to get his strength back. He said for every day in bed, it takes 2 days to recover. So, since it will be 2 weeks tomorrow that he was airlifted, well, you can do the math. He will have a very long road. 

Dr. Morris said his kidneys are functioning perfectly now and he's mainly monitoring for electrolytes and hydration. He adds some fluid, takes away some fluid, adds meds, reduces or eliminates meds, all a big balancing act.

Dr. French came by and we've decided to have the peg feeding tube placed Monday, after seeing how he does over the week-end with the breathing trials.

All of the drs. who listened to Bill said that his lungs sounded clear, but Kim, one of the nurse practitioners for cardiology said he still sounded congested.

But, as I said in the previous post, Bill responded to questions, winked, was very engaged in everything going on around him. He was very focused on the people in the room and tracked different voices around the room.

Also as I said, he still hadn't been switched to the oxygen before I left, but after 12 hours, I needed to leave. Dark, rain, and exhaustion don't make for the best driving conditions and I needed to stop for cat food before getting to the house.

Now for today...I got to the hospital a little later than normal. Since it was Saturday, I left later, knowing traffic would be lighter. When I got to his room, he was just getting cleaned up from using the bathroom. But, his numbers were terrible. He was gasping for air, his heart rate was extremely high, his oxygen sats were low. His blood pressure was normal, but the higher range of normal. His nurse came out as I was gowning up and told the nurse manager on duty to call Dr. Williams to see what he wanted to do. As we were all trying to calm Bill, Sara came in and said that Dr. Williams said to put him back on the vent and the respiratory therapist came in and set it. He was suctioned several times, and instead of the thick mucus they had been getting, it was very thin. But as soon as he was suctioned, he was sounding all gurgly again.

Dr. Threlkeld's nurse Janet, who we've seen before in the office, came in and when she listened to him she said it sounded like everything she was hearing was coming from above the trach, so just at the base of the throat. She also said his collar could use a little air. The insert a little balloon to keep the inner collar tight. She took an empty syringe and injected 1cc of air. The gurgling was immediately gone! Why didn't the respiratory therapist do that? Or the other nurses for that matter? His breathing instantly slowed to normal, and his heart rate normalized and his O2 sat hit the mid 90s. Such a simple fix. She thought that the trial was probably too long yesterday and just really wore him out. 

In watching him, he was not engaged with what was going on around him and was staring mostly at the ceiling, opening his eyes very wide. He was also grimacing a lot like he was in pain. I stood over him and talked to him until he focused on me and then we covered every part of his body, but he denied any pain anywhere. 

Because he's having very loose stools I thought that maybe the "food" was upsetting his stomach some. He can't drink Boost or Ensure because he gets immediate stomach cramps. I didn't remember that bothering him before, so I started looking back over the blog to see and I couldn't find anything.

When Dr. Williams came in I said something about 2 steps forward and 1 step back and he said that the order to put him on oxygen and then back on the vent was not carried out and he intimated that whatever respiratory tech was responsible was really in trouble. It turned out that Bill stayed in trial mode all night! He was never put back on the vent so that he could rest during the night! Dr. Williams said the plan now was to keep him on the vent for today and tonight so that he could recover and that he was going to give specific, explicit instructions for tomorrow. Of course, this set weaning him off the vent completely back by a full day. And Dr. French, the GI doctor, wanted to see if he could be weaned this week-end before placing the peg for the feeds. 

I talked to Mary Rose this evening and she said that the respiratory tech was not the only one responsible, the nursing staff should have seen that he was not on the vent. They are not allowed to set the vent, but they can see if it is set for X number of respirations or if that space is blank. I can tell if the vent is on as a vent or not! So, I need to ask lots of questions tomorrow. The case manager/nurse manager won't be in until Monday. I also want to know if he had been given any pain medication in the night. They have done that before, and just say that he looked like he was in pain. I suspect he may have been given something since he wasn't as focused or engaged.

I will be going early tomorrow so that I'm there if they decided to start the trial early. I don't remember if the drs. rounded on week-ends or not, and I suspect not because they round at 9 and I was there before 9 this morning and don't remember seeing them.

I think I've covered everything. I feel so bad that it was so traumatic for him when it didn't have to be. But, at the same time, I'm not blaming myself. His room is one of the smallest ones in the unit and there's no room for a recliner, so I can't be in the room all night sleeping in a straight backed chair. My shoulder/arm is just now not hurting continually. The blame lays directly with the staff. I will definitely say something when the right people are there. 

I think that covers everything from the last 2 days. I'll let you know what happens tomorrow! Now, I'd better get my clothes in the dryer so they'll be dry in the morning . Goodnight!

For now this post is going to be short and sweet. I think I'm taking my laptop to the hospital today. The internet here at home has been up and down all morning and yesterday was a big day.

The gist of it is....from 9:40 am until after I left last night at 6:30, Bill had been in a breathing trial and breathing on his own! The vent was used as a CPAP machine, keeping airflow, but the actually act of breathing was all Bill. He did so well. The only problems he had were when he couldn't cough hard enough to move the secretions, especially after they turned him. But, after getting a little suction, his numbers would bounce back. His blood pressure and heart rate were tolerating the trial quite well.

The plan was to place him on just oxygen until 9 last night to see how he did and then turn the vent back on, as a vent through the night so that he didn't get into any trouble. But, for some reason there was a snafu of some kind and it still hadn't been done when I left. I told him I trusted the nurses to make sure he didn't have any problems. I also told him there were to be no wild parties or dancing girls and he just smiled really big and shook his head, meaning of course there would be no parties with dancing girls, wink wink. For those of you who actually know Bill, this is a sign that he's coming back. He winked at everyone yesterday and tried to mouth some words. He told me "Morning" when we got there and he told Mary Rose "home", whether he meant he wanted to go home, or he wanted her to go home, we don't know. He also said OK and he was pointing at all the tubes, so today we're going to talk about what has happened.

That's the main event from yesterday. I'll do another post with all of the ins and outs of things later. For now I need to pack up and go. It's an hour later than I normally leave, but it's also Saturday so there should be less traffic, even though it's raining. I need to stop and get gas before hitting the highway and get my backpack repacked. So, until the next update...

Thursday, December 13, 2018

I'm really tired tonight and the last 2 days have been pretty eventful. I'll try to get it all down, without making it really long, yet try not to skip anything. That will be hard to do!

The decision was made yesterday morning to go ahead and do the tracheostomy. It was done about 11 and everything went find. Because they used a combination of drugs to paralyze Bill during the procedure, they did not try to lift the sedation too soon. It was probably about 4 when they started to wake him up.

It took quite awhile before he finally focused on my voice and tracked to where I was. He was still in and out most of the evening until we left for dinner. I say we because his daughter Aimee and her husband Lee arrived in the morning. We checked into the hotel later that afternoon and then met Ryan, Amanda and Daemon, Emily and Bryan, and Mary-Rose, Jack, William, and Petra. We tried to just order pizza and eat in the lobby of the hotel, but found that no place would deliver to the hotel. They will deliver across the street to the hospital, but not the hotel. There is a Wendy's within walking distance so we went there for dinner. Afterwards we met back in the lobby for a mini family meeting.  The main issue we needed to talk about was changing from the nasal gastric feeding tube to the peg tube that goes directly to the stomach. He had one of those after the transplant and hated it. The dr. Aimee and I talked to went over all of the risks and the fact that if there was a problem, he is too weak to undergo a surgery to correct any problem. We think he will probably need to have it, but we want to see if he can be weaned from the vent first. (More on this later). We also nixed the idea of hospice, unless it was absolutely necessary, and we won't know that until he wakes up completely. We then talked about the culpability of the nursing home and the contribution it made to the deterioration of his condition in a matter of 2 days. After agreement all around, the local families headed home, and I took Mary-Rose, Jack and the kids to the hospital as they hadn't been there yet. Bill was still awake, but had been given some pain medication, so wasn't quite as aware of us being there as he had been before.

This morning I went to the hospital fairly early and was there when Dr. Threlkeld got there. He was very surprised to see Bill awake and following with his eyes. He still thinks we are on the right track with the antibiotics and thinks that the trach will definitely help in his recovery. I also noticed that all of the maintenance drugs, the Isoprel for his heart rate and the Propofol for sedation had been removed. He now only gets an IV for some of his meds and of course the antibiotics. I got a huge gift from him today...a wink! He usually reserves his winks for everyone but me. I get the glares and cut away eyes, but not today.

Physical therapy came in and did some range of motion exercises with him. They were pleased at his responses to commands to wiggle and squeeze. The maneuvered his bed into a position that almost resembled a recliner, yet he was sitting almost straight up. He stayed in that position all morning and was able to hold his head up some and it also let him cough some to try to clear the secretions. He continued to track and look around and he would try to get my attention by opening his eyes really wide and raise his eyebrows. He wanted to talk a lot but his mouth is still really swollen from the biter bar and of course he doesn't have his teeth in, so it's hard to lip read. But, he's been swallowing, which is going to be a determining factor for the feeding tube.

The GI dr. came in again and we came to the decision to wait until Monday before doing the peg. We're going to let him get through the week-end and let his lungs recover some before doing it. Mary Rose asked him very plainly if it was OK if we did this, explaining why, and he very emphatically, in front of the dr., nodded his head. The dr. had said it wasn't an emergency situation to get it done tomorrow, so waiting to see if he could be weaned from the vent in the next few days seemed like the thing to do.

Dr. Williams came in and listened and watched and then said that tomorrow they can start the breathing trials again. It should be easier on him this time. So, I'll be going early again, but I'm picking Mary Rose up on the way to the hospital. 

I came home later than usual, but earlier than I had planned. I'm glad I did because once I was home, I really got tired. It was rainy on the way home, and of course dark and those are my least favorite conditions to drive in.  

So, I think I've covered everything. Progress has been made and I think, as before, Bill is going to surprise everyone again. I'll update again after tomorrow's breathing test. Until then, I'm going to bed!

Tuesday, December 11, 2018

I took notes today, I really did. But, I'm too warm and snuggled into my robe to get up and dig through my backpack to get the notebook, sit back with my laptop, turn on the light, and read what I wrote. So, instead I'm sitting here rocking and I'm going to wing it. It actually won't be too hard to do.

Bill was stable most of the day. His nurse Kellye said she had suctioned a bunch of nasty stuff before I got there and, in her opinion, he needed another broncoscopy. I told her that they were talking tracheotomy and she said that had been mentioned. But, nothing had been concerned and she was going to ask pulmonology when they rounded this morning.

Dr. Threlkeld said we were definitely on the right track with the antibiotics and he believed in cheating and playing dirty when it was for a good cause. He said he sounded good, but he always sounds better than his x-rays indicate.

The GI doctor, and I think he said his name was Dr. French, said that his blood count had come up nicely with the unit of blood he had received the other day and they would just continue to monitor, as there was really nothing to indicate putting him through and endoscopy since they couldn't identify an active bleed anywhere.

Kellye did ask Dr. Munday what he thought about doing the bronch and he agreed after looking at his x-ray that he needed one. It was done this afternoon and again, he cleaned a lot of junk out. I know they were sending some samples to the lab again as I went back to his room just as they got him settled down again and the respiratory therapists were just leaving. The plan now was to let him rest the remainder of the day and then try tomorrow to extubate. If they can't extubate by Friday, then we are probably looking at a trach. It doesn't mean that it will be permanent. He had one after the transplant that they thought would be permanent and he had it 2 days short of a month. I told Dr. Munday that I was not opposed to it.

I left shortly after that as he was still sedated and would be through the night. As I was leaving I did get some sad news. The man in the room next to Bill has been extremely sick now and as I was telling the staff that I was leaving for the day his wife came out and told me that all of his lines were being pulled and turned off today. She said they had talked about it before he got to this point and the children were all in agreement that this is what he would have wanted. My heart broke for her, maybe because it really hit a little too close to home. She said that while she was sad, she was at peace with the decision. 

Bill's girls are arriving tomorrow and I'm going to stay in Memphis again tomorrow night. Emily and Bryan and Ryan and Amanda are coming down when Em and Bryan get off work and we are going to have a family meeting. I've told them that while I want to hear their opinions and ideas, the final decision will be mine. I know Em, Ryan and Mary Rose have all said they will support whatever I decide. Harris has said that he trusts me to do what is best for Bill and, even though Aimee hasn't said anything, I don't anticipate any problems there. I still haven't heard anything from Joe or John. I'm not anticipating having to make any major decisions tomorrow night, but at least we will know where we all stand.

So, that's it. It was so quiet today that I actually sat and dozed some. Kellye said they needed to find a recliner for me but I told here there was really no room for one. I was propping my head on my hand and she could see me from the desk and was afraid that I would fall out of the chair! I told her that I was never that deep asleep and was aware of everything going on. Story of my life for the last 20 years!

We got the bill from the flight yesterday...$46,736.60! Luckily we have a membership and a pilot told me that they have to accept whatever Medicare pays as payment in full. He said the memberships are really only beneficial for people who are not covered by Medicare. But, I willed it out and have it ready to mail back to them. I remember with the first flight he took with heart attack #2 it was a mere $10,000! And that was 20 years ago.

All for tonight. I'm not sure if I'm taking my laptop tomorrow, it depends how light I can pack up. I don't want to take an actual suitcase so it may take some creative packing. But, if there's not an update tomorrow night or Thursday morning, you'll know that I didn't take it and it will be updated when I get back home. And with that, I'm going to bed! Goodnight!

Monday, December 10, 2018

Bill had another breathing trial today and he breathed on his own for 2 1/2 hours. But, in the end Mike, the respiratory tech, was not comfortable extubating. He still has a lot of secretions that he can't clear and he was afraid he would get into distress like he did Friday. So, I  think the plan may be to do another trial tomorrow and then make the decision to extubate, or do the tracheotomy. I think everyone is leaning toward the trach. It will be easier to suction it and oxygen can be connected to it instead of using the nasal cannula, or a mask. If you read back through posts of the transplant, he had a trach then and, even though Dr. Hosenpud didn't think he would ever get rid of it, he did after almost a month.

His kidney function is normal, with his numbers being lower than I ever remember them being. He is retaining sodium again, so Dr. Morris increased the amount of water he gets with his tube feedings. He's also added some Lasix again, but that may be added and then taken away and then added again. It's just a balancing act right now. He also had to have some phosphorous again today, but his hematocrit went up after the unit of blood yesterday so he didn't have to have any more.

One thing that I had noticed is that they have been playing with his Prograf level. The Prograf, for new followers, is one of the immunosuppressant drugs to prevent rejection of the heart. I thought about it all week-end and came to a conclusion that maybe they were doing that to keep it at a level that will prevent rejection, yet a level low enough that it allows his immune system to have a little jolt to fight the infection. I asked both Dr. Threlkeld and Cindy, the nurse practitioner for the cardiologists and they were in agreement. Dr. Threlkeld isn't that familiar with the transplant drugs, but he said it made perfect sense to him. Cindy said they usually adjust the amounts continually, but his body did need to be able to fight a little harder since he doesn't have much reserve left.

I came home after he was sedated again since he wouldn't be awake again until tomorrow and I'll go early again in the morning. It was a peaceful drive this morning, very light traffic, even in Memphis. I left the house at 6 and got to the hospital at 7:15. I even got a decent parking place! But, tomorrow could be totally different, we'll just have to wait and see.

My shoulder was good for most of the day, and I was even able to knit for a bit. I'm using bigger needles like I thought and as long as I was sitting straight, it was fine, but once I sat the way I wanted to, my elbow started to hurt. Plus, standing for 2 hours at the side of the bed holding Bill's hand and talking him through the trial, leaning over at times, didn't help it. But, it's manageable with only Tylenol. I may not even take the muscle relaxer tonight. I've got Biofreeze on it now, so I think it will be fine.

There you have it. These days of not much but resting and gathering strength don't lend to riveting reading, but that's where we are right now. More tomorrow, most likely. Goodnight!

Sunday, December 9, 2018

There isn't a lot to say today, there were no major changes. He did have to have a unit of blood again. The albumin they gave him yesterday didn't give him the boost he needed. So, the unit of blood and another bottle of albumin. Austin, his wonderful nurse, was going to draw some more labs to see what his hematocrit was when I left this afternoon.

Dr. Fox said we will try another breathing test tomorrow to see how he does, and he is leaning on performing the tracheotomy sometime this week. He still doesn't think that he will be on a vent forever, whether trach or intubation. But he thinks he'll have an easier time trying to clear the secretions with the trach, and it can be suctioned easier.

Other than that, it was a quiet day. Bill didn't seem to be comfortable today. He was doing a lot of frowning. He also moved his legs a lot. His room seemed cold today, even to me, but it was so cold outside, maybe it was just that.

It was a pretty drive home today. It looked like the trees were all flocked, white and lacy. The roads were clear and there were no problems. I kept checking road conditions and waited until the accidents had been cleared and the power line across the highway fixed. By that time the roads had gone from icy patches to clear.

I'm going early again tomorrow to be there when they start the test. It seems to help him to have me there to talk him through it. And it helps me, being able to look into those pale blue eyes.

All for the way, my shoulder is much better. The muscle relaxer did not make me drowsy and I didn't sleep real well, a couple of hours right when I went to bed and then awake every hour for about 4 hours. Finally really slept from 2:30 until 5:30. I took an Aleve as usual for the slight pain this morning and a little blast of Biofreeze for the couple of aches that were left over. After that, no problems. So, hopefully I'll be healed completely before long. I may try to knit something using bigger needles so the motions aren't as tight as with small needles. Now to find a project!

Saturday, December 8, 2018

Sometimes I hate Blogger! I had a post going and it just suddenly went away. It's done that before, just turns everything blue and poof...gone. So, I'll try to remember what I had written. Usually if it's just off the top of my head, once it's typed, it's gone!

I went to the urgent care clinic and I really should have gone sooner! The Dr. thinks that it is a pulled muscle, but she also thinks that it pinched a nerve in the process. She told me to quit taking what I had been taking and she gave me a shot in the behind and a script for a muscle relaxer. She said if I think it's going to be too strong that I'm afraid I won't hear the phone to cut it in half. I'm to take it bedtime. The shot has worked. There is just a dull ache that is quite bearable. She also said that if my elbow is still hurting after the shoulder is better to consult an ortho dr. for an mri of my neck. That also wouldn't surprise me and one of the places on the list is where I had my ankle looked at last summer.

I'm already back at the hotel. They are gearing up for the winter weather that is supposed to be coming here now. That was the whole reason I decided to stay down here, it was only supposed to be rain. But they are taking precautions with patient care, making sure there are enough warmed blankets for patients who are needing bathing and calling in nurses and finding ones willing to stay over. So, Austin said that since there was nothing planned for Bill for today and the drs. had been in, he would call if anything changed and I could call the unit at any time to check on him. I got some supplies when I was at Walgreens so I don't have to leave the hotel to get something to eat tonight, and yes, I ate a good lunch...spaghetti that was almost as spicy as Steak 'n Shake Chili Mac.

But, enough about me, you want to read about Bill. So, since this could get pretty lengthy,  I could just give you a condensed version, grab a cup of coffee or snack and settle in.

All of his numbers were good yesterday were good, although his hands were still swollen (they were much better today, his bracelets were actually able to slide again). His bowels have also started to move, and here's a little TMI, he got 4 baths yesterday from in the night until I left, if you know what I mean. But, they had been wanting a stool sample from the day he was brought in, so they now have that.

At 9:26 they started the breathing test and he did really well. All of his numbers stayed up. I just held his hand and kept talking to him. Dr. Fox decided at 11 to go ahead and extubate! But, he couldn't get the secretions cleared. They had him on a rebreather on extremely high flow oxygen (set at 15 liters) and he was still laboring. They tried turning it down some and he did not seem to be as distressed, but Dr. Fox decided about 4 that he really needed to be re-intubated. So, he's back on the vent. He also mentioned that they may need to do a tracheotomy to save his throat muscles, plus it's easier to suction through the trach. He had one after the transplant, so I'm not to worried about having to have it done again. And Dr. Hosenpud didn't think he would ever get the trach out and he did. He has surprised so many people throughout this entire process, who knows what he will do next.

They have also started some contact isolation precautions. This means that everyone in the room must be gowned and if he is going to be touched for some reason, gloved. There is also a generic stethoscope in the room for everyone to use. I am the only one who doesn't have to have gloves since I don't mess with any of his IV sites, just hold a hand or smooth a brow. The reason they have done this is because one of the cultures that grew was e.coli. Of course that's found everywhere so it's hard telling where he picked it up. And, for those gowns to be made of paper, they are hot! 

When I left today, (and I am kinda combining the 2 days) his numbers were pretty good. His blood pressure was holding steady again, after dropping after all the trauma from the vent, but his heart rate was going below his threshold. It's set at 80 and it's only dropping into the 70s, which is normally not a problem. The medicine to keep the heart rate up is at a pretty low rate because they do want to wean him off it, but for now, things are holding steady. His kidney numbers are good and they are just going to monitor now and not adjust anything else. They have stopped the D5W fluid (remember on the TV show Emergency how they were always told to hang a bag of D5W?). He is getting all of his normal meds, some maintenance insulin mainly due now to the tube feeding and he was going to get some phosphorous and albumin when I left. The albumin is just to build blood volume some and everything they are giving him can really mess up electrolytes.

Dr. Fox said he is sounding a little junky today, but his xray looks about the same. He hasn't ruled out another broncoscopy and may do it tomorrow if he thinks it's necessary. He wants to wait until Monday or Tuesday before making a decision on if to try to extubate or just go ahead and do the trach. He did say that even though Bill had such a hard time yesterday, his lungs got some good exercise, which is a plus. He also doesn't think that the vent will be permanent.

I did talk to the Palliative Care Team and told them that we don't want to have a meeting right now until we see just how Bill is when he is out of ICU. Dr. Mullinax did come by with a Pastor Joseph and said he understand. It was right after they started the breathing trial he he could see that Bill was focused on me and what I was saying to him and he commented that they haven't found a medicine to take the place of a spouse's love. So, he said that he would continue to follow him and if I needed him for anything to call, he's always available. We then had prayer, and I had to explain that I cry at the drop of a hat, so not to be concerned about that and I was then reassured that God's sees all of those tears and takes them away.

I looked back over my notes from when he didn't want to go to the hospital the time before this emergency and found where I had asked Bill if he was just tired of it all and wanted to stop everything. He told me no that he did not. That tells me that he's not ready to give up, or he wasn't on Nov. 17! He also indicated at skilled nursing and at a prior ER visit, that he wanted to be a full code if something should happen.

I did tell him yesterday that it was OK with me if he did want to stop fighting. I also told him that while I didn't want to lose him, I would do it for him. He didn't give a response either way, but he was working really hard to breathe.

The Social Worker came in and asked if I had had a chance to look over the list of centers she had given me and I told her I had, but that we wouldn't be making any decisions on those until they could be visited. She wanted to know when that would be and I told her I had no idea. Hello! I'm kind of preoccupied here in the ICU! I know she's just doing her job, but where there really is no-one else who could make that decision, until he is stable, I'm not leaving. If the urgent care clinic was farther away that it was, along with the pharmacy, I probably still wouldn't have gone, and the hotel is on the hospital campus, but finding the right center in our can wait. And Bill may not even want to try that again! As Emily said, the dining room may turn into a sick room (although he would hate that).

We did have one very special thing yesterday...we got a new great-granddaughter! I'm not sure what number she is, and I think the numbers in the bio are outdated. But Ariya Faye Haven was born at 3:35 pm, weighing in at 8 lbs. 10 oz. and 20 inches long. Great grandpa missed seeing her picture by about an hour by the time I got it. But, something to look forward to showing him in a couple of days!

I think this tome is about finished. I'm hearing louder sounds from outside occasionally so must be more sleet mixed in with the rain. I'm going to hunker down with my book (wish it was my knitting, but maybe in a few days).