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After a Bone Marrow Transplant in March of 2012, Chris was hospitalized for several serious fungal and bacterial lung infections on Oct, 19, 2012. He lost part of one lung and was treated with a myriad of antifungal and antibiotics. Finally, after two months, he was released. He continues the medications at home and as inpatient at the clinic. You may read the daily blog of this event on page 6.
Mon 12-24-2012 It has been an interesting few days. We tried to make the best of my birthday. Chris booked a room for a couple days downtown. Still having to go into the clinic for several hours every day, we couldn't go far. Chris really wasn't doing too well. He had enough energy to have a nice meal one night. So, apart from the trips to the clinic, that was really all he could handle.
I had a very sobering discussion with one of the nurse practitioners treating Chris. You know it is going to be that way when you are called out of the room to talk. It isn't necessarily something I didn't know, but hearing it added to the anxiety I've been experiencing the last few days. My first question to her was, does everyone feel that the infections will clear up? Her answer was, "we don't know". Things could still go either way. My fear right now is that he catches something else that throws him over the edge. The N.P. felt my fears were not unfounded. "The common cold can kill a transplant patient." was her response. I've been pretty nervous when we are around a lot of people. Especially with the flu starting so early this year.
Here's the latest. Because of the antifungal, Chris hasn't been retaining potassium despite high doses of supplement. Low potassium effects kidney function. And his creatinine numbers have been very high. Today it was decided to hold off on the antifungal for a couple days. This gives him (us) Christmas Day off! So, Merry Christmas Everyone!!
Oh, and Chris still hasn't replaced his cellphone. (He lost his wedding ring also.)
Wed 12-26-2012 Chris found his wedding ring! He was so worried he'd lost it in the yard somewhere. But it showed up in the house.
.Fri 12-28-2012 A new CT scan of Chris' lungs shows a decrease of the infections. That is the good news. It also showed air and fluid in the cavity between the chest wall and the left lung. The fluid can be an idication of infection. But Chris isn't showing any symptoms. Infection is being ruled out for the time being. Chris was a little weaker today.
The CMV is flairing up again. This means more pills. This could be part of why he feels so run down so fast during the day. He seems to only be able to exert himself for short periods before he has to lie down and take a nap.
He has the weekend off from the clinic. Wednesday looks like it might be a busy day with appointments with several different specialists. Further hospitalization has been mentioned. We will see what they all decided. I just breath.
Thurs 1-3-2013We finally were able to consult with a pulminary doctor regarding the air and fluid surrounding Chris' left lung (this is the one that was partionally removed). A tube will be inserted in his chest to drain the fluid and air. The fluid will also be tested for possible infection. It is not expected that there is infection since Chris still isn't experiencing fever. Chris' lung should expand and he should be able to breathe better. If after he's taken off suction the cavity fills again, they will do a sort of "gluing" procedure using talc to help the lung seal to the chest wall. This will all take place inpatient. They would have liked to have admitted him today or tomorrow, but Chris asked that it wait until the middle of next week so that he can spend more time with his daughter before she leaves. Unless, he starts running a fever or has more trouble breathing, he will be admitted on Wednesday the 9th. We were shown the last CT scan today. The infections are obviously clearing.
Sat 1-12-2013 First, Chris' cell number is back in service. You can now easily get ahold of him again. Also, after a short hospital stay, he is now home.
Chris checked in to the hospital Wednesday morning. The doctors consulting on his case talked about the options. Most wanted to proceed with inserting a chest tube. But the surgeon pointed out that if there is no infection, inserting a chest tube will introduce infection. Tapping the fluid for testing for infection was the first step. The roughly 5ozs of fluid drawn was clear of infection. If there had been infection, a chest tube would have been installed. Since it was clear, nothing was done. Any fluid remaining will be absorbed over time. Chris did seem to be breathing a little easier after the fluid was removed. He did experience some chest pains while in the hospital. Several sets were done and were all negative. It is thought that either he had acid reflex or it was related to pain he was feeling near the lung. He was released last night.
Tues 1-15-2013 9:30am Chris is back in the hospital. His creatinin was very high yesterday. His doctor wanted to admit him last night, but Chris protested as usual. Over night he started to develop chills but no fever and decided to call to ask to be admitted. By the time we got to the hospital he had developed a deep cough. He will be moved to a room on the 3rd floor in BMT North. More when I know it.
11:10am He's been moved to 3408 in BMT North which is the ICU of BMT. He is now running a fever of 101 and his lungs, as the NP so eloquently put it, sound "like shit". They were clear when the doctor listened to them yesterday. It is believed at this point that he has the flu. The infectious disease doctor was in to see him and thinks the high creatinin level is part of what is going on. Chris is getting a CT scan and we are waiting for blood work results.
12:00pm The CT scan showed a large area of pneumonia in his right lung. A broncoscopy will be done in a couple hours to find out what the infection is exactly. Pray it is not mucor!
Wed 1-16-2013 Chris is doing much better this morning. The infectious disease doctor told me he is incouraged. We don't have the results from the bronc yet, but from how well Chris is reacting to treatment, the doctors expect it will probably come back as a bacterial infection. Also, the flu tests so far have been negative. His NPO (no eating) statis which he'd been under since entering the hospital was lifted this morning. He's been surfing the web and giving the nurse and myself a hard time. Indications that he's improving.
Thurs 1-17-2013 I've been trying to get some things done here at home before heading to the hospital this afternoon. But I did talk to Chris this morning. He isn't sounding good at all. According to him, there is a bacterial and possibly viral infection in his lungs. He's been told that he can expect a two week stay. He's turned his cellphone off or it lost power and his voicemail is full. I will post the phone number to his room when I get up there.
10:55am I was able to get to the hospital sooner that I thought. Chris has been complaining of bone/joint pain. He's also having some abdominal pain when he breaths too deeply. They've put him on Fentynal. It does make him loopy, of course. As I've mentioned a few months ago, it is hard to see him on pain killers. He drifts in and out. I have not talked to anyone except his nurse yet.
2:30pmSo, here it is. Chris is in pretty bad shape. He has Pneumocystis Pneumonia (PCP). It is a common pneumonia among immune compromised individuals. But that does not make it any less serious. He's been started on antibiotics and on steroids. The steroids are used to reduce inflammation which can get worse during treatment. He is breathing very heavy now like he just got done running a race. And even with the steroid there is a chance he will have to be intubated. Of course, they are trying to avoid that. I was also told that the amount of pain killer is very small. PLEASE DO NOT CALL HIM RIGHT NOW. He is having a hard time breathing and talking makes it worse.
6:05pm As I left for the evening, I was able to talk to the NP. She was waiting for the results of an X-ray that Chris had gotten moments before. She was very concerned that Chris might have to be put on intubation at some point tonight. The oxygen he's on (both nose tube and mask) had been increased to double what he'd been on earlier today. Hopefully they will call me if it happens. More tomorrow.
Fri 1-18-2013 I never know what to expect when I leave for the hospital in the morning. I park then take a deep breath before I get out of the car. Today was a pleasant surprise. Before robing up, I peeked through the blind into his room. There he was sitting up in a chair laughing with the NP I had talked to last night. He's looking better, but they are watching his oxygen level. One of the pulminary doctors was in and mentioned his surprise that it is PCP . Chris gets monthly Pentamidine treatments once a month specifically to combat PCP. The lab is doing further testing on the samples just in case. Still everyone is happy with his progress so far.
2:45pm Chris is doing much better today. And he's starting to get his appetite back. He's off the oxygen mask and his levels have been very good today. There is some pain when he coughs. And he's not as winded when he speaks. He should have no problem talking on the phone now.
Mon 1-21-2013 I haven't been at the hospital with Chris the last few days. I think I got a touch of food poisoning and want to make sure I'm completely well before going up there again. So, I don't have too much new information. I do know that his creatinine has dropped to under 2. (Normal is around 1) It hasn't been that low for quite some time. I hope tosee him tomorrow.
Tues 1-22-2013 I saw Chris this morning. And was able to talk to the nurse practitioner and several other specialists while I was there. His creatinine level has been very good, holding right around 1.8 which is pretty remarkable. The nurse practitioner tells me that they have singled out the actual bacteria that is causing the infection and it is not PCP as originally thought. One of the pulminary doctors was skeptical all along. It is Klebsiella. The treatment has changed. He is no longer on Prednisone (or it was reduced back to the level he was on before.) And he's on a different antibiotic. His oxygen requirement has gone done from 12 Liters to 7. And it doesn't look like he's been hitting the pain button too often. That being said, he is very confused at times. He does know where he is and all, but he will some times start talking like he's working on the car, for example one minute and talking about what the doctor said the next. He's also been extremely tired both yesterday and today. He has a nurse that is a little more on the ball today and actually talked to me about it before I even entered the room.
Chris is also having a very difficult time with his new phone. I think he is accidentally turning the ringer down. And I don't think he understands the incoming text indicator yet. It also doesn't have the best battery life. So, if he doesn't answer his cell...
Thurs 1-24-2013 I'm being told Chris is doing better. His creatinine is holding. I think it was 1.7 today. His nurse got him up walking yesterday a couple times; just in the room in the morning and up and down in the hallway a couple times later. Today he walked up and down in the hallway a couple times again with the nurse and one more "lap" with the physical therapist. He's been very resistant to walk with the PT people. I haven't quite understood it. He wants to walk, but usually sends them away when they show up. His leg muscles are very weak and "burn" with very little walking, and he's never off oxygen. He really didn't have a chance to regain much of his strength from the last hospital stay before he had to go in again. So, he really needs PT. It will probably be another week or so before we can think about him leaving the hospital.
Mon 1-28-2013Chris has been moved to another room. He's out of BMT and in a regular oncology room on the 3rd floor. He's also dumped that Win8 phone. It stopped turning on anyway. I brought him his new replacement this morning. He seems well enough to me to come home. The issue is the lack of strength in his legs. We will see what the doctor says today.
Wed. 1-30-2013 Chris'legs are still pretty weak. He is determined to get around by himself though he's reserved himself to using the walker to do it. Even with the walker he does collapse at times. His legs just give out. We will be going home with a walker when the time comes. Physical Therapy is in his future. We don't know as yet whether it will be out patient. His creatinine has gone up a little. It is again over 2. He finished the antibiotic for the current infection yesterday. And there has been a slight reduction of the GVHD drugs.
Thurs 1-31-2013 Chris will be coming home today. He will have home physical therapy and will be on oxygen for a while.
Sat 2-2-2013 It hasn't been too bad so far. Chris has been able to get around without the walker, though there have been a couple times that he was glad it was there. The oxygen machine is working out very well at home. Dragging tanks around when we go out is quite a pain. The first physical therapy session went well, as I understand it. I was not able to be around when he was there, but Chris seemed happy about it. I do worry about leaving him alone when I have to go to work, etc. He does try to do too much when I'm not there. I know a few people have mentioned visits and it would be great if everyone interested could plan on early evenings during the week. Any time during the weekend would also be helpful.
Wed 2-13-2013 Chris has been home a couple weeks now. It has been up and down. Some days he seems like he's improving, then the next he sleeps all day. He's still on oxygen, but is able to get around without the walker most of the time. It will be quite some time before we see him back to where he was before the pneumonia. I'm still having to leave him alone in the evenings which worries me. But he has had a few friends stop by while I'm not here. His brother was in town for a short time which was a great help. We were also reminded that we are coming up on one year since his transplant. It is hard to believe. He starts long-term follow-up testing next week.
Tues 3-26-2013 It is hard to believe that it has been a month since I last up-dated. The news is mostly good, but there are new challenges. Chris has been getting much stronger. He went from using the oxygen only at night to not at all. And he takes the stairs a little quicker. This week, though, he was started on a daily infusion of an anti-fungal med after the discovery of yet another fungus in his good lung. This one is Fusarium. A CT scan yesterday shows that it is decreasing already. In the meantime, a trip to a Dermetologist resulted in a biopsy of a spot on his shoulder that came back as positive for melanoma. It will need to be removed and a lymph node will be biopsied also to make sure it hasn't spread.
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| The brusing at the top is the area where the lymph node was removed. |
Chris is home and the only thing different is the 4 inch incision on his shoulder. Its as if it never happened. We even had a late lunch at Olive Garden. So far so good.
Fri 4-12-2013 We got the pathology report back regarding the melanoma. All indications are that it did not spread. It looks like the surgeon got it all, though the clean margins on one side was pretty tight, so there is a possiblitlity he may go in again to make sure. We will know more at the follow-up appointment.
Thurs 4-18-2013 After a follow-up with the surgeon today, it was decided to go back in to make sure to get good clean margins around the melanoma sight. The surgery is scheduled for tomorrow at 1pm.
Fri 4-19-2013 After another late lunch at Olive Garden, Chris is now home. The surgery went just as well as the last one. The incision is a little longer and curves around at the bottom now, but he doesn't seem to be in any pain. We follow-up with the surgeon again in about a week.
Thurs 5-2-2013Well, everyone, Chris is back in the hospital. I'm not sure there is a definitive reason. He's been complaining of a pain in his side when he coughs and periodic headaches. And he's been very tired. I believe they are worried about his kidneys again, also. Recent scans and x-rays have shown some sinusitis, air around the lung and unresolved infiltrates. He's had sinus cultures and an x-ray already today. He's in room 3213.
Sun 5-5-2013 Chris is home now.
Sat 5-25-2013 Chris has been doing fairly well lately. He's being tapered off some of the drugs, specifically the immunosupressive and steroids. It doesn't reduce the pill count much. He's still has all the antibiodic and antifungals that he takes several times a day. He's still having a hard time eating. Food just doesn't taste good. But he tries. His weight has been stable at around 145. So, the goal has been to fattin him up. Unfortunately, even ice cream doesn't taste good now.
He's been doing well enough that I am able to take a trip to see my family in a few days. He has a very good friend who has offered to stay with Chris while I'm gone. I am very grateful.
Tues 5-28-2013 Well I'm holding off on my trip hopefully for just a day. Chris had what at this time is a mini stroke. Thankfully it happened during a clinic visit this morning. He just slumped over and was unresponsive for several seconds. He initally could only move his right leg and arm. But gradually, he was able to move his left side so that by the time he had been moved to the ER, he had almost full function. He's been admitted for the night. Hopefully he will be able to come home tomorrow.
Wed 5-29-2013 Chris is doing really well. He had an MRI which was "unremarkable" (nothing unusual was found). He had an Ecocardiogram which was negative also. He's getting a chest x-ray now to make sure his central line hasn't moved. If that turns out to be alright also, he will be released today. All his favorite specialists have been by to see him even if they really didn't need to. And his appetite has picked up. I may be able leave tomorrow if everything continues to go well.
Tues 6-4-2013 I left for Illinois on the 30th and had a very nice visit. It was a great break for me. But I did come back a little earlier than planned. Chris is in the hospital with pneumonia once again. He's back in BMT North at PS/L. His breathing is very fast as if he's running a race. There has been talk of putting him on a ventilator. If his breathing doesn't slow down he may be placed on one. He's been drifting in and out of dream states which is common for him when he is sick and on a pain killer. He's on a few antibiotics now until the a culture can be identified. Then the meds will be scaled back to the effective one.
6:30pmThe pulmonologist still doesn't think Chris needs to be intubated. But to give his body a rest, he's been fitted with a BiPAP mask and is receiving bilevel positive airway pressure treatment. Almost immediately after the mask went on, Chris started to breath more comfortably.
The outlook is positive. The feeling is that he will recover from this latest bout. They expect him to be here for at least a week. I'm expecting it to be two or three.
Wed 6-5-2013 11amChris' temp has been running normal since last night. I guess it was 103 when he was admitted. He was also on blood pressure medication to keep the pressure up. That has been stopped and his pressure has been stable. His kidney function is also good at 1.3. And so far the BiPap mask is working for him. Intubating is still a possiblity if his breathing gets worse.
Chris has been halucinating quite a bit today. I have seen him do this before, but it is causing some concern as I'm told he had an unwitnessed fall when first admitted. He will be getting a head CT today to make sure there isn't a problem. He was able to have a short conversation with Brooke this morning. He knew he was talking to her and was responding to what she was telling him. All good signs. He has to remove the mask to talk though. That's why he had to make it short.
Thurs 6-6-2013 Chris is a little more with it today. He still wakes up talking about something he was dreaming but instantly recognizes were he is when he opens his eyes. That was not the case yesterday. He is off the BiPap for now and was on the regular oxygen mask all night. He's still on a high level of oxygen. They got him up sitting in a chair for a while, and tried to get him walking across the room. That didnt work out so well. His blood pressure dropped pretty low when he was standing. Maybe they will try tomorrow. He's been eating ok. Not as much at dinner than at breakfast this morning. But he is eating. And he's back giving everyone (including me) a hard time. As his doctor said, "he must be getting better".
Phone calls still aren't a good idea right now. His oxygen drops when he talks too much. We are still trying to avoid the ventilator.
Fri 6-7-2013 Chris is very disoriented today. When asked where he was and what year it was, he told the NP that he was at the Roosevelt Hotel and it was 1973. He fiddles with the sheets, tubes and wires thinking they are something he needs to work on. He's been asking about things that don't make sense. Yet he knows he's talking to me. I wish I had a recorder with me. Physical Therapy came in to move him around a bit. I guess sometimes some light excercise can help with disorientation. Surprisingly he didn't fight or argue with her but he was too orthostatic to stand on his own. So, all she was able to do was hold him up while the tech changed the sheets on the bed.
He has a tech sitting in with him. You have no idea how comforting it is to me to have someone there when I want a break. I'm going home at night, but he had been pretty stable mentally.
He's been breathing better. They've been doing blood gas testing everyday. His CO2 level is a little high today. However, they are hoping to be able to remove one of two of the oxygen sources he's using now. A chest x-ray was done this morning.
Sat 6-8-2013 Once again, I don't know what to expect when I walk into Chris' hospital room. He actually called me last night and had a pretty lucid conversation with me. This morning I got there to find that he was heavily sedated and in arm restraints. Seems he got rather difficult early this morning - hell bent on getting out of bed. He is still orthostatic and would just pass-out if he stood up right now. They tried to reduce the sedation while I was there, but he just started thrashing around and yelling at everyone to let him get up. They had to turn the sedation back up again to calm him down. His oxygen started to tank while he was struggling. The doctor and NP know he gets a little disoriented when he gets sick, but he's been able to come in and out of it before. They may do an MRI. That decision hasn't been made yet. He did have a head CT a couple days ago that didn't show anything unusual. So, the pneumonia is the priority right now. The X-rays have shown that there is still a lot of active infection. He still has someone watching him today, and his nurse has been very attentive. I decided to leave and go to work for a few hours. There was no change when I went back at about 4pm.
Sun 6-9-2013 Chris is still being heavily sedated. (Dexmedetomidine, Adivan, Fentynal) And he is still very disoriented. The nurse (he is her only patient today) said he knew his name and where he was, but he thinks its 2022. The Pulminary doctor who has seen him many times in the hospital over these months, thought it was the worst he's seen him. He also told me that the latest X-ray was worse than the previous one, which was not what I expected to hear. Everyone keeps asking me if anyone has talked to me about intubating him. I guess that might still happen.
Keep praying everyone!
Mon 6-10-2013 Chris was resting much more comfortably when I arrived this morning. But that was short lived. The Dexmedetomidine (aka Precedex) had been increased over night from .7 to 1.2 in hopes of keeping him in a more even state of calm without the ups and downs he'd been going through. But within the first hour of me being there he got extremely aggitated. His oxygen level dropped to the low 50's as he struggled and was excedingly slow to recover. Once again intubation is being discussed. His latest x-ray showed no significant change.
11:30am No intubation today. The Pulminary doctor felt Chris was about the same as yesterday when he saw him and didn't feel intubation was necessary at this time. He did have to have the nasal oxygen tube put back on with the mask again. Yesterday and through the night it was only the mask. Since he wasn't recovering fast enough when he struggled, they thought it a good idea to add the nasal tube. They may leave it in place and just turn it off and on as he needs it.
I have to say that all the nurses and techs that have been sitting with him have been very attentive. They have been concerned about cleaning and moisturising his mouth and keeping him comfortable. I know he's being taken care of. It helps that they all know and love him. But more so, they are doing their job. Refreshing after experiences at other hospitals with both Chris and my Dad.
Tues 6-11-2013 There has not been much of a change today. I guess he gave the night staff a hard time. Today, though, he seems less aggitated. There are orders to switch his sedation meds. He's being taken off Precedex and they stopped the Adivan. The new medication (name escapes me now) is less a seditive and more to treat his aggitation and disorientation. I brought up concerns about nutrtion. He hasn't been able to eat in several days. Hopefully, that will be addressed soon. Again, today, he has a very attentive tech sitting in with him.
Wed 6-12-2013 As I write this, Chris is being intubated. Not because it was an emergency, but so, as the Pulminary doctor put it, to help turn over every rock. They will be able to do a broch and an MRI. The doctors and staff feel as frustrated about everything as I do. My first question to the doctors was "will he ever get off the ventilator?" The Pulminary doctor sounded very confident that at this point he would. This was based on his oxygenation being 100% at rest. I brought up nutrition again this morning and was assured that it would be started today.
Yesterday afternoon, he was a little more with it, responding correctly to me and his friend, Steve. However, he would suddenly want to get out of bed, trying to pull the oxygen mask off. When that happened, he would go into a panic, turn blue and start grabbing at anything he could get his grip around. It could have become an emergency situation at any moment. I'm being reassured, that intubating will protect him.
4:30pm Chris has been resting comfortably on the vent. He certainly didn't like it much at first, but it looks like they've gotten the sedation right. He's been switched to Propofol which has an amnesia effect. He most likely will not remember anything later. They may supplement with Fentanyl if he gets too aggitated, but the idea is not to have to use it. He will be assessed each morning to see how disoriented he is. He's had a bronc and MRI today. The possiblility of a spinal tap has been mentioned to me. They are searching for any possible neuroloical reason for his disorientation.
Thurs 6-13-2013 Chris did very well last night. I'm told he was cleaned up this morning before I arrived. The sedative was reduced at that time to evaluate him. He did get aggitated which is expected. But it is also good. I will worry if he stops fighting. Nutrition was started last night finally. He actually gets "meals" also - extra nutrients and protein. The other benefit of the feeding tube is that they are able to give him the Noxafil. That is the anti-fungal he's been on since December or so(and will be on the rest of his life). We had tried to give it to him a few days ago, but he wouldn't swallow it. An IV antifungal was started, but it isn't as good as the Noxafil. The last thing I wanted to see was for the fungus to take over again. 10:00amThe first report on the bronc is that he has CMV in his lungs. He's had CMV before, but I've never heard it to be in his lungs. That my explain his feeling so fatigued the last few weeks. He will start treatment for it today. I'm sure they will find more, but thats the first hit. The MRI was clear as I suspected. 10:45am The Pulminary doc was in. He wants to leave Chris on the ventilator for today. And try to wean him off tomorrow. They will give him Zyprexa which is an oral drug. Let it start working, then lower the Propofol and see how he reacts. Again, more could still pop up from the bronc, but at least they have something to treat now.
Fri 6-14-2013 Chris tried to open his eyes a little for me when I first came in today. I couldn't tell what he was thinking. But it was good to have him look at me. I got here as early as I could, so that I was sure to be here when they tried to wean him from the ventilator. I was very excited about seeing him off it.
We were all ready to start weaning Chris when the results of his latest CT scan came in. Good news for the most part. The infection seems to have gotten better. However, there appears to be more air and fluid around his left (now partial) lung. Before they wean him, they want to draw off some of the fluid and insert a chest tube to suction off the air. It will be easier to do all that before he comes off the ventilator. The likely reason the air pocket got bigger is that after a lobectomy, a small stem is left. It is basically the old air way to the now absent lower lobe. Sometimes, the pressure from the vent can create a hole at that stem. All that will happen late this afternoon. My only worry is that he will likely be given a pain killer again. Assuming his disorientation would clear up when off the ventilator, it will probably start up again on the pain killer. We will wait and see.
7:50pm Chris had the chest tube placed late today. They drained off 30cc of fluid and 150 of air. His nurse tonight was his night nurse before he was placed on the ventilator. She was commenting on how strong he is and told me she had to call a "Paul Bunyon" on him that night. I had to laugh because we'd heard that code on one of his last visits and had a good laugh about it then. The plan is still to wean him from the vent tomorrow.
Chris definitly understands what is happening. He opened his eyes and looked at me this afternoon. And he seemed to understand what I was telling me. It was heartbreaking. He looked at me with a sad expression and gently shook his head. I really hope he can settle down when they start to wean him.
Sat 6-15-2013 Chris was resting comfortably when I arrived this morning. I arrived early enough to catch his night nurse as she was leaving. She told me he did well. He has been given Zyprexa, and the Propofol is being reduced. We will see how clear headed he is as the Propofol dose is lowered. I was under the impression that he would be completely weaned from the ventilator today. In fact, they will only start a wean to see how he does breathing on his own. I'm told it can take a couple days to wean him completely. 4:00pm Chris has been basically breathing on his own all day. His sedation has been reduced to about half of what it was. Which means the grouchy Chris is starting to appear again. Communicating has been frustrating, he's managing fairly well, using the only sign language he knows - "the bird". He's more upset at having wrist restraints than having a tube down his throat. The sedation will be increased a little and the ventilator turned back on to give him a rest tonight. The weaning will continue again tomorrow.
Sun 6-16-2013 Once again the ventilator has been switched to wean mode. The sedation was reduced even further. For a short time it was switched off completely. He started to have a hard time breathing through the tube and was coughing a lot, so to relax him, the sedative was turned back on. He is very clear headed and knows exactly what is going on. I told him he could yell at me when they removed the tube. He nodded in agreement. Despite that, I'm looking forward to the tube removal. And I'm hopeful that he does well enough for that to happen very soon. 3;45pm Chris has been off the ventilator a little over an hour now. Not an easy thing. He was coughing quite a lot after the tube was removed. He sounds like a frog right now, but his throat doesn't seem to be too sore. His oxygen has been great just on the nasal tube. And they may try to have him sitting on the edge of the bed in a little while.
Mon 6-17-2013 I can't tell you how wonderful it was to see Chris' name on the caller ID when my phone rang this morning. It was even better to hear his voice at the other end. It is going to be a long haul once again. But he's doing well. He was given the green light to eat just about anything he wants, not that anything tastes good to him so far. And they were able to get him in the shower which was quite an ordeal. He doesn't have the strength right now to even sit up straight. It did wear him out. Soon after getting him back in bed, he was fast asleep.
Tues 6-18-2013 It is the seemingly little things that tire Chris out. He started bugging the nurse early this morning to help him shave. He'd grown quite a beard and wanted to look nice for his daughter who would be here today. Just sitting up in a chair made him extremely exhausted. The therapists have been trying to work with him. For the most part he's been cooperating. The chest tube was removed this morning. But he has developed a rash that has been biopsied. The rash could either be GVHD or a reaction from one of the medications. He's finished the heavy IV antibiotics and back to his normal oral regimen. If it is medication induced, the rash should clear soon. Eating is still a challenge. Putting him on a feeding tube has been threatened. Yesterday he was willing to try anything I suggested. Today, not so much.
Thurs 6-20-2013 The chest tube was removed yesterday morning. He's been able (with a lot of help) to walk a couple feet using the walker. Chris also made the decision to go on the feeding tube. He can still eat and is trying, but even if everything tasted great to him, he still wouldn't be able to eat enough to pack the pounds on. The feeding tube should offer continuous calories while he tries to find what tastes good. You can't tell when he's all covered up, but he really is skin and bone. Even after the "University Episode" he weighed more than he does now. I haven't asked how much he weighs. I don't want to know. He still isn't sleeping real well at night. He falls asleep quite easily during the morning. I brought his guitar to him today. Hopefully, he will try to sit up more to play.
Fri 6-21-2013 Chris is about the same as yesterday. He's very tired and his breathing is more labored. He is starting to get nebulizer treatments and Mucanex to try to break up some gunk the docs are hearing in his lungs. His rash tested positive for GVHD, so the Tacrolimus was increased slightly. It is already starting to clear up. Since he's been here he's dropped roughly 12 pounds. Pounds he can't afford. He's down to 132. He's still trying to eat.
Sat 6-22-2013 Chris called me last night. He was very excited to tell me that (with the nurse's help) he had been up walking around the room. He didn't tell me if he'd used the walker, but my guess is yes. He had been sitting up in a chair about three separate times yesterday also. He used the walker around the room two separate times while I was there this afternoon. He can't go very far before he's totally winded. But every day is a little better. He's trying to eat, ordering something for each meal no matter how small. He has been coughing a little more and has been bugging the doctors to give him something to suppress it. They want him to cough, so they won't give him anything other than Mucanex. He got very anxious about it. So, I stayed late to help calm him down enough so he could sleep. They are going to try Ambien for him tonight.
Mon 6-24-2013 Chris seemed a little weaker and was breathing a little harder yesterday. He slept quite a bit all afternoon. And was starting to say strange things again. Making sense one minute and not the next. He did pretty well at lunch and dinner, eating more than just a bite of things. This morning he was better. I noticed his oxygen was up to 6 liters from 3 yesterday. Maybe that has something to do with his weakness yesterday. He had been exercising a lot on Saturday, though, which could have worn him out, too. He's had problems with the feeding tube coming out. It goes down his nose. He's had to have it placed three times now. He will be getting an ultra sound of his belly to see if he can have a "G" tube inserted. It would go through his abdomen instead of down his nose. He could also be send home with it. There is also talk of moving him out of the BMT to a regular oncology room in the next couple days. The Infectious Disease doctor tells us the bacterial infection has cleared. They are still treating for the CMV. But all his meds have been switched to orals. He's getting pretty ornery, but is still willing to work the physical therapists. I always feel sorry for them when they walk through the door. He gives them such a hard time.
Tues 6-25-2013 Chris has been moved from the BMT critical care unit to a regular room on the 4th floor (4203). He's doing very well, working very hard to get stronger. He had a very hard workout session with physical therapy and wanted to skip the wheel chair in favor of the walker walking from the old room to the new one. They followed him with a wheel chair, but he never showed any signs of needing it. His appetite has also been much better. He ate most of breakfast and all his lunch today. He had apparently pulled the feeding tube for the third time over night. They are going to give him a day or so to see how well he does picking up weight without it. He has officially been given outside food privileges which will help.
Thurs 6-27-2013 Word on the street is Chris is being sent home tomorrow. He's still dropping weight. He's now down to around 125. But he is tryng to eat as much as he can.
Sat 6-29-2013 Chris is now home from the hospital. A Physical Therapist will be working with Chris at home starting today.
Tues 7-9-2013 Chris has been home a little over a week now. About all I can say is that he's hanging in there. Breathing is a challenge and he gets extremely tired rather quickly. He is trying to keep busy as best he can by working on fixing some tape machines. He's been eating much better. I've been making him at least two ice cream shakes a day which he looks forward to. Weigh-in at the clinic today showed that he's gained a couple pounds. So, we are headed in the right direction. Physical therapy really tires him out. But he is still happy to work when the therapist arrives.
Fri 7-19-2013 There hasn't been much improvement in the last week or so. Chris is still very short of breath. And though his appetite is better and his taste is improving, he really isn't eating enough. He gained a couple pounds but lost them again. His muscles are getting stronger, but with the shortness of breath, he runs out of steam pretty fast. After a visit to the Pulminary doctor who had very little to say about his breathing, Chris has been pretty depressed. I'm doing what I can, making sure he eats and takes his medications. He gets a milk shake at least twice a day which I "spike" with Ensure powder. He still doesn't like the taste. But I'm pretty firm about doing it.
Thurs 8-1-2013 Chris is currently in surgery as I type this. He had a couple more spots of skin cancer that need cleaner margins. He will be home this afternoon.
Chris really hasn't been doing any better in the last few weeks. He is still weak and needs oxygen continually. He is eating, but doesn't seem to be gaining any weight. He will be up a few pounds one day and down the next. I try to make at least a couple milk shakes a day and push food at him every day. But I'm not always able to be consistant. The project I've been involved in all year is coming to end, so I've been trying to work on it as often as I can. That keeps me from being home weekends and most evenings. Between that, my business and keeping track of his meds and dr appointments (both change constantly) some things do slide. There have been some additions to his medications that hopefully will help his lungs get back in shape.
Tues 8-27-2013 Today Chris had both a clinic and pulmonology appointments. He is still gasping quite a bit. He has lost more weight; now at 120. And he's recently has a hard time swallowing. The consensus is that a feeding tube would help get more calories in him. But finding out what might be going on with his swallowing is first. So, Chris is being admitted to the hospital this afternoon for all the necessary procedures. The goal is to have him out and home on Friday.