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Wed 8-28-2013 It was a frustrating day for Chris. He had been on NPO (nothing to eat) since midnight in preparation of a procedure that wasn't scheduled until 1:30 this afternoon. The nurse tried to get moved up which couldn't happen. Instead it was almost 2 before they came to get him. He said he had to wait for another half-hour before they started. Well, the procedure was to place, once again, a tube in his chest to suction out an increased amount of air around his left lung. Something they saw on a CT scan done as he was admitted. We were expecting a scope of his throat and the placement of the feeding (P.E.G.) tube to happen today. New plan. The scope will be done tomorrow to see if he may have an obstruction in his throat. If there is, that will be the focus. If there isn't, the focus will be placing the PEG tube, and making sure he can tolerate it alright. No one is really expecting an obstruction. Instead what is believed is that his weight-loss is making him weaker causing him to sometimes not having enough strength for his esophogus muscles to move when he trys to swallow. Lack of nutrition may also be causing his gasping under exertion. He is just getting weaker. If the feeding tube can supply enough nutrition to get him stronger over-all, these other problems may get better also. I want to stress that Chris is eating. He just hasn't been able to eat enough to make up for all he lost in June. On top of that, all the energy he is getting is used up just walking across the room. His nutritional requirements are like those of a long distance runner right now. Hopefully, he will get that by using the PEG.

After talkng to the doctor about the plan this afternoon, I don't expect him home before the weekend.

Thurs 8-30-2013 I got to the hospital at around 9:30 this morning. Chris had already been taken down for the throat scope. He finally made it back to the room at 1pm. He is still sleeping it off. I'm anxious to see the doctor to find out if they found a blockage in his throat. He didn't stop in until 5 last night.

5:20pmAs expected, there were no obstructions in Chris' throat. The PEG tube will be placed tomorrow morning. It will actually deliver the nutrition solution just past the stomach. That way it won't keep him from eating on his own because he feels full. What ever they gave him to sedate him for the scope this morning is taking a really long time to leave his body. He's been loopy all day. Not as bad as he was during the last hospital stay, though.

1:30am I just got a call from the nurse taking care of Chris tonight. He still hasn't gotten the sedative out of his system. She says he's very confused. But more worrisome is that he is having a hard time breathing. They did a scan of his head which didn't turn up anything, of course. And he has been placed on a BiPap. He will be reevaluated in a couple hours. If the BiPap isn't working, he may go on a ventilator. I have been debate when to go back to the hospital. I may wait a little while. I've just been so tired.

Fri 8-30-2013 - Chris has been moved to BMT North again. I got here around 6 this morning. He was still on the BiPap and resting comfortably. He's had a nurse with him all night and a sitter today. At about 8am his blood pressure started to drop. An x-ray shows a new infiltrate in his right lung. Intubation is a possiblity at some point.

9:40am - He is intubating him now. They just feel he is too weak to tolerate the BiPap only while they try to treat his pneumonia. They will do a bronc to try to see what the infection is. The theory is that with his trouble swallowing, it may be caused by something that went down the wrong way. I was told that they would get nutrition in to him while on the vent. The NP on his case thinks he will most likely be on the vent for at least a week.

Chris was a little loopy yesterday. During the evening, he got more disoriented and started to have some slurred speech during the night. A blood gas test showed a high amount of carbon dioxide in his blood. That's why they put the BiPap on him. Which prompted the call to me early this morning. I think that should update the story. (Edit: Later I learned that they initially thought he might be having another TIA. And a Rapid Response team was called. He will probably remember all this later.)

Sat 8-31-2013 Chris did well last night. They had to get a lot of fluid in him to hold his blood pressure, but he's on a very low dose of the blood pressure med now. He may even be off it by the end of the day. Because of all the fluid, he's swelling up a little which actually makes him look healthier. Hopefully he won't need much more and the swelling will not get worse. Two things have come back from all the cultures. His CMV is flaring up again. He will be treated for that. And there is a bacteria growing from the bronc culture. It hasn't been pinpointed yet, but he will be started on another antibiotic for it today. His CO2 levels got better before I left last night. He also is being tested for a neurolgical condition that causes the anti-bodies to attack muscles. This is sort of a far fetched thing really. No one is expecting a positive on it mostly because this condition is mostly seen only in women. But as one of the doctors told me yesterday, "We don't give up around here". It is a simple blood test, so why not do it. We probably won't have the result until the middle of the week. And an MRI yesterday didn't reveal anything unusual. I also requested that physical therapy start working with him. I don't want to his muscles getting any weaker than they have to. My call. He can yell at me later.

Sun 9-1-2013 7:45am The news is good! I got here just as one of the doctors (he's had an ICU doctor seeing him daily) came in. He is doing much better. A scan this morning showed significant improvement and they want to start the weaning process this morning!! It may be rough. His nurse tells me he was a little "combative" when they tried to reduce the sedative last night. But just hearing that they want to work toward extubating is really incouraging. He's still on the blood pressure med. It had been turned off yesterday morning, but that didn't last long. He is on a very low dose and it will be reduced further today. They will also be watching his CO2 level as he is weaned.

1:00pm They tried to wean Chris off the vent this morning. He started to get pretty anxious even though the sedation hadn't been lowered at all. The respitory therapist told me that though he wasn't ready this morning, he could do fine later today. It can be different hour to hour. They just keep trying until he can tolerate it. She will try again later this afternoon. He's been running a fever which spiked last night. They are watching that. Otherwise he seems comfortable and doing fine.

6:00pm He still wasn't able to wean from the vent this afternoon. They will try again in the morning. He's breathing ahead of the vent which means that he's controlling the vent instead of it breathing for him. That should make it easier for him when he is finally able to be weaned. His fever finally broke. And he still seems very comfortable and relaxed.

Mon 9-2-2013 10:30am Another unsuccessful wean was tried this morning. His breathing is rapid and shallow when he's on his own. They will try again this afternoon and keep trying every day if necessary. The PEG feeding tube he originally came in for is scheduled to be put in tomorrow.
5:00pm Chris got a little rambunctious today. I left the room a little after 11 to grab something to eat. He had been getting a little restless, so I stopped to tell the nurse as I was walking out. Apparently, as soon as I left, he managed to pull the wrist restraints far enough to reach the vent tube. Luckily, he didn't pull it out, but it did give the nurse some excitement. She's been giving him small doses of Fendynal to keep him calm. And she's making sure the restraints are tight enough. He's been moved to a room closer to the nurses station so that it is easier for them to hear the vent alarm.

It sounds like the PEG tube won't go in tomorrow after all. A CT of his abdomen showed some dilated blood vessels in his stomach. They don't want to take the chance of hitting one. Sounds like they want a little more time to consult on it. Chris has also started running a fever again.

Tues 9-3-2013 12:00pm Chris managed to tolerate the wean for 30minutes this morning. This time the sedative was turned off completely for the wean which helped. His numbers weren't ideal, but much better than yesterday. They've scheduled another for around 4pm this afternoon. Chris is on a much lower sedative dose with a fentynal drip. He seems pretty comfortable. He's been responsive; following commands and opening his eyes. The blood pressure med is off once again. He's been on and off over the last few days. He may go back on it again today.

Wed 9-4-2013 8:30amThe wean yesterday afternoon was not as successful. He only lasted about 5 minutes. He was alert and was communicating the best he could. The pressure settings were changed on the vent to get his lung muscles to work harder on their own. This was incredibly uncomfortable for him. The sedative and pain killer were turned up a little. Today, the vent pressures are good and he's on the same amount of oxygen that he's been on at home. He was given a couple bags of red blood cells. He's completely off the blood pressure med. And he had an uneventful night. The pulminary doctor tried another wean at around 10am which was not very successful though. He told me that Chris is just too weak yet. And that he expects it will be another week before Chris is able to get off the ventilator. Not very encouraging. When he saw the shocked look on my face, he said, "Oh, but we will take it day by day". Meanwhile, a few little changes are being discussed. He's developed a rash. The Infectious disease doctor will be switching antibiotics to see if it might be medication related. The BMT doc is watching to see if it might be GraftvHost. Chris will get more Lasik to help him eliminate more fluid in hopes it helps him breath better. He was given a different steroid which is helping his blood pressure. I asked under what condition they might be comfortable placing the PEG. I hope to have an answer soon. Chris has been frustrated and impatient with me now that he knows he's restrained. Very understandable. He wanted to try to write something, but he doesn't have the strength to hold the pen. He recognizes everyone who comes into the room. He even gave a wink to an NP that he likes to give a hard time.

Thurs 9-5-2013 9:40am Just to prove that taking it one day at a time is the best advice, Chris has been on a wean now for just about an hour. He's doing well enough that the tube maybe removed very soon. The Pulminary doctor was pleasantly surprised. 10:00amAnd it is out!!!! 12:00pmHe's doing well. He will have a swallow evalutation in just a bit. 4:12pm Chris did not pass the swallow eval. They couldn't get a feeding tube down his throat either. The Neurologist did some nerve and muscle testing today. She said there is something going on. We should hear more tomorrow. For now, he's not to eat or drink anything. The PEG tube placement is scheduled for tomorrow. His throat may just need a little more time. He still has a lot of weakness in his arms. Again, that should get better by tomorrow. Chris has been very cooperative today. He even let physical therapy work with him a little.

Fri 9-6-2013 Chris will go into surgery for the PEG tube at around 2pm this afternoon. He seems weaker this morning. And he's not being allowed to even suck on ice because of his difficulty swallowing. His mouth is really dry. He's been chewing on gum, but it doesn't seem to be helping much. There has been nothing from the neurologist yet. 2:35PM Chris is in surgery.3:25pm He's out of surgery now. All went well. He will be in recovery and then moved back to his room.

Sat 9-7-2013Chris really isn't doing very well today. He's not talking much and stares off into space quite often. He is getting medications through the new feeding tube, but they are holding off on nutrition for a little while longer. They are letting him have some ice chips for his dry mouth. You can see he's having a hard time swallowing with just a small amount at a time. The feeding tube is a little painful. Today is sort of a holding pattern day. I doubt Physical Therapy see him. I'm hoping Speech Therapy will be here to work with him on swallowing. Just waiting to see.

Sun 9-8-2013 9:00am Chris has been sleepy all morning. He'll wake up for a few seconds then fall right back to sleep again. I know he's gotten Fentynal and Adivan recently. I haven't heard when and how much yet. (Edit: He got both at midnight.) The tube feedings started yesterday afternoon. They start off at a slow rate and work up to the recommended goal. So far he's tolerating it fine. They are going to try to get him out of bed and in a chair for a while sometime today. 3:00pm The verices blood vessels in Chris' stomach are worrying his doctor. Internal Radiology will be consulted tomorrow in hopes that a cause can be isolated. The enlarged vessels suggest a back-up in the liver, though all the standard liver tests point to the liver functioning normally.

The Neurologist came by Chris' room today. So far, the neurological tests they have done have come back negative. The one result they are still waiting on is the test of an antibody in the blood stream. The doctor felt it was an incouraging sign that the weakness doesn't seem to be rapidly worsening.
Hopefully, the speech therapist will arrive early tomorrow to do another swallow evaluation. Chris really wants to eat something. He's only allowed ice chips. I left him sitting up in a chair. His nurse (one of the awesome male nurses in the unit) helped him shave which made him feel better.

Mon 9-9-2013 Chris has been sleepy today also. He was sitting up in a chair for about an hour and Physical Therapy got him stand. He was only able to take a few small steps. It was exhausting for him. He's been waiting for Speech Therapy to show up. As of 2:00pm, she still hadn't come in. He's done with most of the antibiotics. His rate on the nutrition feeding is 50ml/hr. He was only at 30ml/hr when he was intubated. The goal right now is 60. So they are really pumping in the calories. Getting him stronger is the objective. He's agreed to work with any therapist that walks through the door. We'll see how long that lasts.

Tues 9-10-2013 Speech Therapy came to see Chris yesterday afternoon. Her recommendation was to have a Barium Swallow Test. They managed to get it done first thing this morning. Chris passed with flying colors. He has to start off with soft foods first, so a milkshake and mashed potatoes were ordered as soon as he got back to the room. He was able to walk to the bathroom and back with the walker. It was exhasting, but he did it. All the tests neurology has ordered have come back negative. There is one more result they are waiting on, but they are confident that it will be negative also. The tube feedng is going well. He looks better today. Still a long way to go. He's already told me he won't work with physical therapy today. I knew it wouldn't last.

Wed 9-11-2013 Chris is starting to experience shortness of breath. He has also been running low grade fevers for a few days. He is getting a CT scan of the chest, abdomen and pelvis this morning. Blood cultures have been drawn also. And he was started on another antibiotic. They don't want to get him out of bed right now. This is quite a set back. He was doing so well yesterday. The one advancement that has been made is that his diet restrictions are less limiting. He should be able to eat what he wants.

Thurs 9-12-2013 10:00am- Chris is being intubated again!! He has been gasping for breath all night. It took me longer to get here than I wanted due to some severe rain. They had tried the BiPap mask last night and talked him into trying it again this morning. It was very obvious that he was just too tired. They intubated almost immediately after I got here. It is a mystery right now. The CT from yesterday didn't show anything new or worse. Maybe more can be learned once he's comfortable.
<10:50am A chest x-ray was done after Chris was intubated. It showed a large infection in his right lung. He most likely aspirated once he was told he could eat. Because he's been intubated twice so close together, they may do a trach. This would allow him to be off sedation and be able to participate in physical therapy so as to get him stronger while still being on a ventilator. It is reversible and it helps protect his vocal chords. 1:35pm Chris is comfortable and resting now that the ventilator is doing the work. Watching him gasp for air this morning was very hard. It is easier to see him so comfortable. It looks like the tracheotomy will probably happen tomorrow morning.

Fri 9-13-2013 9:00am It is hard to sign the consent form for a procedure Chris never would have known was needed. He is having a tracheostomy now. It allows them to remove the tube. By removing the tube, damage to his airway and vocal chords will be reduced. It will be easier to wean him from the ventilator, allowing him to only be on it at night if possible. He will not be so sedated and will be able to communicate. I don't know how he'll feel about it when he's taken off sedation and realizes what has happened. I'm hoping he won't be too upset. 9:55am It went well. He was given something to "paralyze" him. It should wear off in a couple hours. Then they will reduce the sedation. Now he has a tube in his stomach, the central trifusion line in his chest and a tube sticking out of his throat. Not to mention the catheter. If we can get him stronger without further infection, they will all go away.7:00pm Chris is still sedated. He got very aggitated when it was reduced. A wean was also attempted without success. An x-ray this morning showed that the infection is clearing in his right lung, but there is quite a bit in his left. I'm not understanding the ventilator settings and what they mean. But what I do know is that his Peak pressure hovers around 40 which is high. His lungs are stiff. The neurologist testing is still not showing anything. The BMT team is still looking for answers to his muscle weakness. He will be switched to a different sedative tomorrow that should keep him comfortable but alert.

Sat 9-14-2013 My day started with a phone call at 4:30 this morning from one of the nurses taking care of Chris. Happily it was a good call. They had switched his sedation during the night, getting him off that awful Propofol and on to something that just made him calm. He was awake and wanted the nurse to call me and find out when I'd be there. At just before 6am I walked in to a smile.
So, he's on the vent which is working through the trach tube. He's clear headed and able to mouth what he wants and write questions. I got a small dry erase board for him to write on.
This is the second time that they think he aspirated. He has also been receiving treatment for Klebsiella and CMV in his lungs. Both were clearing up before this new infection. Initially, his right lung was infected. That appears to have cleared. Now it is his left lung. A new x-ray was just done. I will probably hear the results by the end of the day.
Physical Therapy will most likely be in today. I know the nurse wants to try to get him to sit on the side of the bed soon.
With all the flooding going on around us, I had the added worry of the creek behind our house overflowing. Thankfully, it never got more than a few feet over the bank. And by yesterday afternoon it was down to what I consider a normal flow level. There is still rain in the forecast, but I think we are going to be ok.

Sun 9-15-2013Chris looks really good today. He still can't speak because he's still on the ventilator. A wean was tried this morning. It didn't last long. They are giving him a rest and may try again this afternoon. Meanwhile, Chris will get to watch the Bronco's game.

Mon 9-16-2013 Chris is doing well this morning. He was on a vent wean for about half an hour yesterday evening. And he's on one right now. He's doing well. It may not be long before he's off it completely. He's anxious to see the Speech Therapist today. He'd really like to eat. I don't think they will let him until the trach has more time to heal and he's able to have longer vent weans.

Tues 9-17-2013 Chris was on a wean for 7 hours yesterday. He's weaning again today. As expected, the Speech Therapist wanted him to wait until he's off the vent to do another swallow evaluation. He's not as frustrated about that as I thought he'd be. Ok course, he's still getting continuous nutrition through the feeding tube. He's really feeling pretty good.

Wed 9-18-2013 Chris isn't doing quite as well as yesterday. He got anxious and had trouble breathing when they put him on the wean this morning. He was taken completely off the IV sedative which may be why he got anxious. He will probably started on Zyprexa today. He's gotten his days and nights mixed up a little, so he's not sleeping at night. Physical Therapy has been ordered for twice a day which may help tire him out and sleep better at night. Another vent wean will take place later today.

Fri 9-10-2013 Chris gave us a little bit of a scare this morning. I was later getting to the hospital than usual. And walked in to find two nurses and a tech hovering around Chris and the lights over his bed on. Turns out minutes before I arrived, Chris dozed off and wouldn't wake up. They were all ready to send him down for a head CT scan. He was responding somewhat to commands. The pulminary doctor and the floor NP decided it had to be medication related. They gave him something to counteract the Xanex he was on to keep him calm during vent weaning. Within seconds he woke up to see all of us staring down on him. We all had a good laugh about it. He's been taken off the Xanex. And will probably be drowsy for a few hours.

Yesterday Chris was sitting up in a chair all morning which was great to see. His breathing during weaning is quite rapid and shallow as it was before this hospital visit. The whole focus right now is getting him stronger and building muscle. Tiny, baby-steps. Physical Therapy really tires him out. All they are doing is what we would call some light excercises; leg lifts with some resistances. Still it really does him in. And he's getting it twice a day. He's also started Testosterone replacement. His level has been low, but because of his history of Prostate Cancer, they didn't want to treat it before now. His muscle loss is out-weighing the Prostate Cancer risk. They will be watching his PSA level just in case.

Sun 9-22-2013Chris is making remarkable progress. The ventilator tube attached to the trach tube in his neck is just pushed on. During a lot of movement (moving him to change sheets, etc.) it would some times pop off. Yesterday when it popped off, he let the nurses know that breathing on his own felt very comfortable. The pulminary doctor on duty agreed to let Chris be taken off the ventilator just to see how he would do. The Dr. didn't think he'd last long, but why not see how long Chris could go. Well, 24 hours later, Chris is still off the vent. He will probably be taught how to work the trach in order to talk today. And it sounds like speech therapy will be in tomorrow morning to do the first swallow evaluation.
Chris has been in very high spirits. His whole posture has changed. He is still extremely weak, only able to get to a chair with a lot of help. He's controlling his legs alright, but is extremely wobbly. There is no way, at this point, he would be able to get out of bed even with a walker.
Physical and Occupational Therapy will be working with Chris 3 times a day starting tomorrow. Unless there are anymore set-backs, the thought is that he will be in the BMT for another week or two. Then he will be transported to the rehab facility (Spaulding Rehab here at the hospital) for another couple of weeks.

Shortly after writing this, I got a phone call from Chris. IT SPEAKS. :)

Tues 9-24-2013 Chris is doing well this morning. Last night was a different story. His oxygen saturation started to go way down after the nurse moved him around to change his sheets. Earlier that day, the trach tube had been replaced with a smaller one. He had been swallowing ice chips for the speech therapist with no problem or pain. Later he started to complain of throat pain. It got worse when the nurse moved him around. Even stranger to me was that she removed the speaking valve for a few minutes, and he was still able to speak. Turned out the trach tube had somehow been pulled and was close to coming out completely. The Pulminary doctor on duty was called to replace it. Easy to do, but strange that it happened.
Chris is still on a high amount of oxygen. A new infection may have been discovered. This time not in the lungs. Blood cultures were drawn yesterday to verify. But at this point, it is suspected that the first cultures were false positives as there are no other symptoms. He may be started on antibiotics again as a precaution.
A new Barium Swallow test is scheduled for today. And if he passes, the speech therapist will want to sit with him while he eats something for the first time.
He had some good physical therapy sessions yesterday. And is looking forward to working to get his strength back. I don't quite understand the change of heart about physical therapy, but I'm liking it.
5:00pmIt was a day of hard work for Chris. Working with the different therapists was incredibly tiring. His swallow evaluation took place directly after a physical therapy session. Because he was pretty tired during the test, it gave a more acurate result. He knew he was having some problems. He's been instructed to continue only ice chips, swallowing hard each time. His work with physical therapy seems discouraging until reminded of what he was able to do only a week ago. He was able to walk just out of his room and back today. Last week, he could only get a few steps from the bed to the chair.
We also learned today that a culture from the bronc wash he had done when intubated the first time is growing mold. Which is surprising since he's never been off the antifungal during this hospital stay. The theory is that he isn't absorbing the drug properly. So, he will be switched to Ambisome; an IV only antifungal. He has been on it before. It is hard on the kidneys. So, I would expect he will be followed by the kidney doctors. And that he will be getting constant IV fluids to keep his kidneys happy. It is not know what strain it is yet.

Wed. 9-25-2013 Looks like things are moving backwards. Chris' heart and respitory rates are up, and his oxygen requirements are higher too. He's halucinating some, though there have been moments of clarity. He told me he had a rough night. I guess he told that to one of the nurses also. I'm sure he didn't get a lot of sleep. But, to me, it really looks like an infection is getting out of hand. Could be the mold that was cultured. He will be getting a chest and head CT scan soon. 3:00pm Chris' trach started to come out again and had to be replaced. I think it is more comfortable now. Respitory suggested having him on the ventilator at night to give him a rest. The Pulminary doctor agreed. So, the vent is back in his room ready for tonight. The head CT looked fine. I'm waiting to hear about the chest CT. He's sleeping a lot today, just barely waking up for the various therapy people that come in now. Physical and Speech were both able to work with him (only bed excercises for PT today), though he pretty much kept his eyes closed the whole time. He was started on the Ambisome yesterday. Maybe tomorrow he will be more awake.

Thurs 9-26-2013 Chris is a little more awake today and clear headed. He was on the vent all night, though one of the other Pulminary doctors suggested that to keep his breathing muscles from getting weaker, Chris should only be on the vent if absolutely necessary. The chest CT scan confirmed the mold activity and possibly viral also. But there doesn't seem to be any bacteria which means he didn't aspirate this time. Though Chris is more awake, he's feeling very weak. He had the speaking valve on, but it takes a lot of effort to talk. So, he hasn't been talking much. He's not on the computer all that much either.

Fri 9-27-2013 Chris is struggling today. He was last night,too. And he's running a fever. He has a lot of thick gunk he's trying to cough up. Pseudomonas seems to be what everyone thinks is causing the infection this time because of the thick secretions. He's had this before. He's being started on an antibiotic that was successful in fighting his particular bug last time. I walked in to find him on the vent this morning. He's off now, breathing through the trach tube, but they are leaving the speaking valve off for now. He is having to be suctioned about every hour. The Infectious disease doctor told me his x-ray from this morning actually shows less infection than the last one. Still, he's decided to hit Chris hard with the new antibiotics. He's still on the antifungal also.

Sat 9-28-2013 Chris still has a hard time on the ventilator at night. Once he's taken off, he seems much more comfortable and relaxed. Apparently, it is the reverse for most people. He still has a lot of secretions that make it more difficult to catch his breath. He has started getting treatments with a special vest that inflates and sort of pounds on his chest. It is designed to help break up gunk in the lungs. It doesn't bother him too much. He actually tells everyone it is fun. But that's Chris. It is hard to tell how effective it is. He's also getting nebulizor treatments. We are waiting to see if the new antibiotics will start doing its work.

Mon 9-30-2013 A lung scan this morning shows improvement which is encouraging. Mold is very slow growing, so identifying the exact strain had not happened yet. But he is still on he IV antifungal. The focus for the Infectious Disease doctor now is to find out if there is a good reason why the antifungal he has been on for the last year has been less effective. I pointed out that the PEG tube may have been placed just past the stomach keeping it from being absorbed properly. He's going to look into it. They will be checking the level of that drug in a couple days.
The discouraging thing is that Chris is still breathing very fast and shallow. They try to put him on the ventilator to give his chest muscles a rest, but he feels like he can't breath at all and panics. They may try again tonight. He wanted to take a break from the vest yesterday, just to see if it mattered. He's requesting that it be started again today.

Wed 10-02-2013 Because Chris' breathing has been so shallow, CO2 built up in his system. This made going back on the ventilator a necessity. Like the last few attempts, he had a hard time on it at first. It was thought that the ventilator was some how defective. He was alright for a little while on the replacement vent, but soon had a problem with that one too. There is a cuff (balloon really) around the trach tube that is inflated while on the vent. It seals the airway so that no air escapes through his upper airway allowing the vent to give his lung accurate pressure. In order to get the correct pressure for Chris, the Respitory therapist had to inflate the cuff as high as it would go. This would seem to indicate that the trach tube is indead too small; something someone (wish I could remember who) thought might be a possiblity a few days ago. Upsizing the trach tube is being considered, but the settings on the ventilator now seem to be doing the job. Chris is resting comfortably and his numbers are fine. The plan once again is for him to be on the ventilator though the night. And off during the day which will allow him to be rested for physical therapy.

Thurs 10-03-2013 Chris was on the ventilator all night. As I understand it, he did not sleep well and was given several different things to try to help him sleep. This morning when I arrived he was very delusional, but in a different way than usual. More like he'd had a crazy dream that he thinks really did happen. One of the meds he was given last night was Ambien. He's had crazy dreams on that before. I've asked that it be taken off his available list just in case it was responsible.
The trach tube was upsized yesterday evening. And he was on the ventilator all night. Physically, his breathing is much better today. A recent head CT scan looked like he may have a sinus infection. An ENT doctor took a look and said there was a lot of mucus but no infection. They also were able to get a current weight on him today. He's 130.6lbs. which I think is pretty close to what he was the last time he was weighed. The nutritionist will be increasing the tube feed rate. Physical therapy got him to stand up and into a chair this afternoon. He did it mostly on his own power today. His oxygen saturation never dropped below 94. Yesterday it dropped into the 70's and he needed a lot of help. I'm hopeful that giving him a rest on the vent at night will only help during the day. But who knows how he will be tomorrow.

Sat 10-05-2013 Chris had a hard time when they tried to get him on the ventilator last night. He had a larger amount of mucus that may have kept him from tolerating the pressure. The night before he did fine. His CT scan from yesterday shows things moving in the wrong direction. And he's having some abdominal pain that is new. A number of new tests have been added to rule out anything else that might be going on. His tube feed has been decreased in case the pain is related. They are collecting sputum for culture. And a broncoscopy wash will be scheduled for later today. His antibiotics were to have been done. They will be switching him to new ones today. He does have a resistant bug in his history. I was told that there are options, but they are worried about over using the antibiotics. Obviously, things change on a daily basis.

Mon 10-07-2013 Chris has had a couple of great days. He's been able to get on the ventilator at night making it much easier to work at getting stronger during the day. Today he walked with only the aid of the walker around the room several times without having to work to breath quite as hard. The physical therapy people have been impressed at how strong he is. He hasn't been getting as worn out after working with PT either.
Despite this, the prognosis is still questionable. The results from the recent bronc wash are only preliminary so far, but there is a bacteria present. The Infectious Disease doctor is worried it is a resistant strain. He is running out of antibiotic options. They have started administering an antibiotic via a nebulizer; making it more concentrated. Meanwhile, we wait to see if the bacteria can be identified. It is the first time this particular doctor has ever been less than hopeful.
Even with this news, Chris has been in very high spirits. He's been more active, searching and reading emails on the computer. And where he didn't even want the TV on before, I find him watching the news in the morning.

Thurs 10-10-2013 There hadn't been too much to write about Chris' progress. Then this happened.
Two women from Physical Therapy showed up as usual to get Chris up and walking. I left the room for a few minutes. When I came back, Chris was still sitting on the side of the bed and his nurse was cleaning him up. I must have looked puzzled, because his nurse held up the end of the PEG tube so I could see it. It had somehow pulled out while the women were trying to help Chris stand up. The little balloon that holds it in was still inflated! I have my theory on how that could have happened. And it must not have been painful or Chris would have known something was about to happen. Now an otherwise uneventful day will include the re-placement of the PEG tube. Chris is taking it in stride. His nurse is not. I'm sure he immediately got to writing the event report the minute he left the room.

Sat 10-12-2013 Chris has been in good spirits and holding his own this last week. He's been off the vent completely the last couple days and, though he seems to be breathing fine, he is very tired. He may go back on the ventilator tonight to help him rest. He took a short walk in the hallway and was able to sit in a chair for several hours yesterday. He's been given the green light to eat, but after a bite or two, he's not interested. He's still getting continuous tube feed, though he is still loosing weight. The antibiotics continue.

Mon 10-14-2013 Chris' blood pressure started to drop early this morning. He called me at around 2:30 after they'd gotten it to stabilize. At that time, we discussed his signing a DNR and refusing medication to keep his pressure up. A couple hours later, he called me talking about wanting to stick around a little longer. When I got to the hospital, I immediately noticed that he was, in fact, getting a blood pressure medication. Talking to his nurse, it sounds like what he was telling me during the second call was that he had changed his mind. He did NOT sign the DNR and asked for the medication. He has been very sleepy this morning. Probably because he was awake most of the night. He's back on the ventilator also. 6:00pm Chris slept comfortably on the ventilator most of the day. He was removed from the ventilator for a few hours this afternoon so he could talk to a number of people this afternoon. He's developed periodic muscle spasms that have gotten progressively worse. Holding and dialing the phone was a challenge.

Wed 10-16-2013 After talking to a number of people on Monday, Chris and I decided that I must be putting an overly positive spin on my posts here. I think it is because I still have hope, and I want everyone else to also. The fact is, although Chris is still being treated, optimism is waning. Chris put it very well when talking to someone. "If I weren't here, I'd be in hospice". This is a true statement. There have been bright moments on this roller coaster. His muscles spasms don't seem as bad, and he is now off the blood pressure medication. He does not require the ventilator. His last x-ray was unchanged and recent blood cultures have been negative. He made several laps around the room twice yesterday with the walker and assistance.
Some of the negatives are that he just doesn't have an appetite and isn't gaining any weight even with 24/7 nutrition through the PEG tube. He still requires oxygen. The infections are not gone. And he can't get out of bed without assistance. It wouldn't take much for things to go down hill very quickly. Monday was a good example.
Every time Chris has been hospitalized this year, the hospital staff is surprised that he walks out again. They just never expect him to. Though they have never once let on about it at those times. They have all grown to love him and are always pulling for him.
It is at these times that end-of-life discussions take place. They are important discussions we all avoid until it becomes grave. It is too bad we wait, but it is something we just don't think about. Thankfully, Chris has been clear headed enough to have these conversations. If once again he is able to walk out of here, the decisions will have already been made.

Sun 10-20-2013 Chris is hanging in there, but things are getting worse. He's developed a fever once again, so an antibiotic has been restarted. He's had a couple irregular heartbeat episodes. He's getting some extra electrolytes to help combat them. There is a Limited DNR order in place now. Limited in no chest compressions or medication to restart his heart. But if he needed the ventilator, it is available. He's been taken off ICU status which in Chris' case doesn't sound like a good thing. It looks like his doctors don't think Chris has much longer. They have suggested his daughter come out to see him.

Mon 10-21-2013It has been suggested to me that if there is anyone who's wanted to visit with Chris, now would be the time to do so. The doctors have indicated to me that Chris will be moving into a more palliative care situation. Chris has indicated that he does not want to come home. So, if you've wanted to see him, now is the time. He has been quite sleepy the last couple days. The Ativan may have built up in his system. We aren't sure. But I don't want that to be a deterrent for anyone who wants to to see him. He's at Pres/St. Luke's - 19th and Franklin in Denver.

Sat 10-26-2013 Chris has been having some great visits with his daughter, family and friends. For now, nothing has been changed with his treatment. He is getting weaker, though. In a few days, some medications will be stopped, and he will be under what is being called Comfort Care.

Sun 10-27-2013 Chris had a very difficult night last night. This morning he has been restless and unresponsive. He will be under Comfort Care starting today. A Hospice nurse will be by some time today to answer questions.