One Month and One day

The PT guy comes in the morning. He does a few leg exercises then takes Tracy out on his walker. Tracy gets anxiety out in the hallway and they bring him back. When he gets really anxious he has to pee and he only has seconds to take care of that. I am almost ready to suggest depends or something. But I doubt that would go over well. Then Tracy says it would be easier if it were just me and him doing the walk and I say I am ready when you are ready and we sit and wait all day until he is never ready for the walk. By 6 pm yesterday I was quite frustrated as it was clear once again that we were not doing the walk and left the hospital until I realized I had nowhere to go! The nutritionist has come also. Tracy I think knows what he has to do and I am not sure what the hold up is. I think a lot of it is mental. Since about 6 months ago he really lost his confidence in a lot of things. Well actually most everything.

He has been up all night unable to breathe and now he wants a klonopin which is anti anxiety. If he gets one now he will be asleep until 5 pm so I hope he does not get one.

Employee Discount

The nurse tonight is horrible. The bad thing about being changed out of ICU is the nurse to patient ratio is noticeably different. She messed up the sleeping meds they are supposed to be given once at around 10 then again at around 3 am to keep him asleep all night. She gave them all at once which caused Tracy to really zonk deeply out and his blood pressure to drop 70 over something. She did the nebulizer treatment and forgot to hook the oxygen back up so his O2 sats dipped down in the 80s rather quickly. So one minute all was well the next his blood pressure and oxygen were dropping and we could not get Tracy to wake up. The nurses aide was the one who saw that the oxygen was not hooked up and checked about the meds. So I am thankful for the one with the less education. His O2 is back up and the aide is checking the pressure every 30 minutes and she thinks as the sleeping meds wears off the pressure will go up, his heart rate is fine. Then when my heart settled back down, I noticed that his tube feeding was coming back out of his nose. The rate was set way off. And backing back up.

I wish I could see the future. There is slow progress or sometimes I think I am making up the progress. It is sad that I am hoping we can get back to where we were at before this began which was really at a bad place. I do not know which doctor to believe. Certainly I like Dr. Law and I think he is smart. He has been right about Tracy pulling through, but he has no pull at Cleveland Clinic (which is where our insurance will pay 100 percent) and is having a hard time getting through to anyone. He honestly says that there is not a chance that Tracy would be put on a list now because he is too sick. Even though it could take up to a year to find a lung, he is too sick now for one. Dr. O'Mara believes that Tracy can get much better without a lung transplant with just the trach. I need to talk to him more but he is hard to catch. He does not have a practice. He is only an ICU doctor part time. But i would like to get a name from him. We do not have enough doctors :). Dr. Doom thinks Tracy should be dead.

Even if we do not need full time home health care our life will be hard when we get home. The feeding tube will need to stay in place for awhile because wasting is a disqualification for a lung. That takes maintenance and certainly Tracy can not go anywhere with it. The trach will need maintenance. Joshua will actually have to be trained also. There needs to be two people in the household if possible to learn how. I guess if the other person in the house were Nancy they would not do that. Tracy is so weak, so frail, so tired. HIs life is still very precarious and I think that if he crashes again I would let him go. The two mistakes made by the nurse tonight if not caught would have been almost enough to set him way back again to deciding between life and death. So I wish I could see the future. I hope this was all worth it to him.

Off topic...not that I really have a topic...but I get an employee discount at the coffee shop now.

MRSA and out of ICU

I guess i do not understand his form of MRSA. It is in the urine and although he is being treated, he will always have it and always be contagious. In ICU I had to wear a mask, gown. Here they do not require it. It does not seem to bother him physically and is not changing anything except they added an antibiotic. We did view it as a set back and his spirits low. Both of ours actually. Any improvement is hard to see and he is frustrated. Maybe soon he should have a few visitors to encourage him on. We did get moved out of ICU and the room is 339. He was a little anxious to be off of the ICU room, but maybe being in a regular ward where the nurse/patient ratio is not as high will force him to move around which is what he needs to do. I really want to be home soon. It is hard to believe it has been 29 days since we have been here.

What Have I Done

So Tracy could not sleep with out the vent. I think it was largely anxiety because the Respiratory Therapist said physically nothing was wrong. His chest sounded clear, his heart rate, blood pressure, etc was fine. He says he is very short of breath today and no one's spirits are good at all today. It is just so hard to be the cheerleader when the team is quite hopeless. The trach is going to be permanent. He says he can not breathe very well at all though even with it. They want to do PT - he does not want to. I do not know what to do. They are talking about having some home health care person come live with us when/if we get home and even Law is changing his three weeks time period. Long term rehab. We will go bankrupt. I feel so hopeless. What have I done?

slitting my wrists

So Dr. Law had a good trip. He is pleased with progress. Tonight Tracy is going to try and sleep without the vent. This is making him very very anxious. Tomorrow they are going to try and go all day without the vent and a couple more days of that and he can move to a regular room. He also is able to eat and drink liquids and soft foods. They are going to put in a different trach valve that would enable easier talking and breathing. This is as simple as pulling something out putting something in. It is not a huge deal and if he goes home with it, then I will have to know how to change the valve as well as other maintenance. Joshua will have to learn also or maybe William. Just so that if there is a problem there is always someone at our home that knows how to handle it. Dick was here today and he had nothing to say about Tracy but lots to say about himself. I now have the power to request nurses that we want for the following day. Travis or Cynthia do scheduling and they tell me who is on and I tell them who I want. It is sad that I have been hear long enough that I have some influence in decision making.

Dr. Law is so happy with progress that he sees us going home in THREE MORE WEEKS. PLEASE NO. I am going to go insane. Alan and Karen are coming up next week to help with things and I appreciate that. I can not leave Joshua alone that much and although I will not be staying every night I do not think, Tracy does want me here and Dr. Law is going to request a private room so that I am able to stay with Tracy on the regular floor.

Our goals for tomorrow are to not call the nurse unless there is a dire emergency. One of the nurses said that she saw my look of horror when Dr. Law said THREE MORE WEEKS and that perhaps if we could show that we were not requiring a lot of nursing care that the timeline could be shortened. So we will not call a nurse unless there are major blood issues.

SIGH

Tracy is just fine as long as he knocked out on oxycontin or klonopin. He has been up for 10 minutes and must be incredibly thankful that I saved him for a life of misery.

People on our Side

So apparently Dr. Law is not leaving until Saturday. He is bringing his laptop so that he can check into the lab work in the mornings and he now has my cell phone number so that he can call me. He has also spoken to his colleague with instructions to show me the chest xray or anything else I ask for regarding any tests that have been done. The CRP and WBC are both down (good news) the RBC is inching up (also good news). The chest x-rays which had slid a bit is noticeably clearer again. Dr. Law called the pulmonologist in Rochester and apparently if Trawick does not get cracking with either trials, transplant or something then Dr. Law said he would. It would be better if it came from a pulmonologist. Dr. Law will take it in his own hands if he needs to. He said he would be a patient advocate along with me to get things going and keep things going.

He also had apparently heard about yesterday and the bad attitude of the staff and was very unhappy. He called in a few nurses and respiratory people and although not the ones directly involved, they were the superiors of the other ones. There will be a meeting today. Dr. Law stressed that there have been many studies that show the brain is the most powerful organ involved in healing. Having a positive attitude helps, having a negative attitiude hurts. He also stressed that he has known Tracy for many years, that he has a good idea of what kind of person he is and what he is capable of overcoming. The staff at this hospital do not know him. He was quite angry, but made his points on many levels. The head nurse today was very sorry for what happened yesterday and during this morning's meeting was going to bring up that not everyone patient was heavily sedated. At that Dr. Law brought up that even heavily sedated patients can hear and perhaps predictions on survival were better discussed in the nurses lounge. Later that nurse stopped me in the hall way and said he was on all day and to get him personally if I had a problem. He has come into talk to Tracy a few times today. This morning all who come in have been very update, pointing out the good things. There are still bad things and we are aware of those.

Tracy is feeling better this morning. Right now he is sitting in a chair and that went without a hitch. Hannah is coming up later on. Then they will do another spontaneous breathing trial. Yesterday he was on for 4.5 hours. They hope for more today. If this rate keeps up Dr. Law hopes we will be home within 7 to 14 days. Those numbers seem huge to me, but at least the word home has been brought up.

So now that I am full of cautious optimism, it is time for someone to come in and squash that so we can continue the up down pattern.

Staff's Positive Attitude

Today started off with the primary care doctor telling us about the blood results that came back in our favor. Certain markers that predict the bodies ability to recover are heading in the right direction and the latest chest x-ray showed improvement. Then when the respiratory therapists and nurses were doing the rounds they stood right outside of Tracy's room and spoke of how terrible Tracy was doing and how they did not think he would make it. I can not believe that they did not realize that we could hear all that was being said. After that they came into the room and started calling Tracy Trace which we he is never called by me and really over explaining all of the medical terms. This all really bothered me as since Tracy is a clinical pathologist he understands his blood work better than they ever could. They are hardly our friends so to make up cute nicknames was inappropriate. It is also difficult enough for us to try and have any kind of a positive attitude given our situation at hand but to have the majority of the staff saying out loud in ear shot that he does not stand much of a chance is frustrating to say the least. Anyway, I guess I had enough today. No more nicknames and more of a positive attitude at least in our earshot. Certainly Tracy has no chance if he gives up trying. We are not naive that he is serious, but without hope there is nothing. When Tracy is discharged, I plan on buying the "power of positive thinking" and passing them out to the staff.

Good News and Bad News

Good News: Tracy got out of bed for a bit today and sat in a chair. He had to be lifted into the chair and the whole thing was rather stressful. But he was happy that he did it. He sat for awhile but after was very very tired. His spirits this morning were good and hopeful. He says he feels better than he has since he has been into the hospital. Albium is up a little (over 2). They dropped a couple of drugs. They lowered some of the settings on the vent and he was able to handle them this morning.

Bad News: White blood count is higher, CRP is higher, RBC is lower. Dr. Law was concerned today. They have run more blood cultures but do not expect results until tomorrow. They started him on another antibiotic this morning. This evening he had lots of anxiety. He REALLY does not like for me to leave the room even for a quick bathroom break much less a trip home to shower. Everytime I have left he has had anxiety which makes his settings on the vent and his heart rate go nuts which causes the machines to beep and causes more anxiety. He is not as hopeful tonight. I hope we can sleep some tonight. And tomorrow's blood results are going in the right direction.

When I see him struggle so much to just sit in the chair, the first thing I think is what have I done to him. Were my decisions made with his best interests at heart or mine?

Better Days

The last couple of days have been busy. Tracy is doing well. They did the tracheostomy today with the hopes that he will be able to get off of the vent earlier. Dr. Law (the optimistic one) thinks it will be off by Sunday or Monday. The other doctors are still convinced he will not ever get off (or he will die).

Tonight he is off of the sedation meds and alert. Quite surprised by all that has happened actually. He has smiled a couple of times although other seems quite concerned that he has a trach and a feeding tube. We are slowly explaining the siutation and I hope he will understand our decisions. I guess if he makes a full recovery it will all be worth it.

Baby Steps

Things are going okay today. Yesterday was a gloomy day with a lot of pessimistic doctors and respiratory therapists. Today though Tracy did a good job breathing on his own. The vent tube was still in but he was doing the breathing. He did that for about 2.5 hours. He also was awake enough to communicate with hand signals and blinking of eyes. We tried to get him to write something down or use the keyboard of the computer, but neither worked well. He will probably still need a temporary trachea tube in place of the tube that goes down his throat before he is completely off. Things are better today though. His blood work also is looking pretty good. Most things that need to go down went down and the things that needed to go up stayed the same. So baby steps.

Trach Decision

They are doing the trach thing on Friday. It is temporary. They will run the vent through the trach so he can be more comfortable. It is likely he will have to keep a trach of some sort until we have more concrete answers. One doctor up here is very gloomy and not hopeful at all. Tracy's primary care doctor is optimistic (cautiously so). We are all aware of what the situation is. I mean we have been stuck in ICU for a week so clearly Tracy is not in the best of health, but we would not be doing all of this if we did not feel there was a future and hopefully a productve meaningful one. Dr. Law (the hopeful one) has said that there is a long road ahead and is going to come up with some new names to help. Tracy today has been more alert and can respond to basic commands like wiggle your toes and squeeze my hand as well as shake his head yes or no to a few things such as are you cold, do you know where you are, etc. He has said he is not in pain but does gag quite a bit. I do not blame him and I hope the trach vent works better for him.

Another day

Today is its usual good things/bad things day. The good thing is that Tracy is occasionally awake enough to respond to yes or no questions such as squeeze my hand if you know who I am....he does know who I am :) and his stomach does not hurt. He did however think a dose of oxycontin would be a good thing. They might try to do another run of breathing on his own today. The blood counts are extremely slowly inching up. The bad news is that they are talking of a semi-permanent trach tube if they can not wean him, plus that he might have congestive heart failure. Neither are what we want. They would never be able to get Tracy lucid enough with the current vent in for him to help make this decision. So it would be up to Trevor and I. They did a CT scan and we are waiting on those results.

Up and Down Day

It has been a usual up and down day. Most of the blood tests are coming back better. One of the doctors has said that the chest x-ray looks "much better" and another says he sees a "tiny improvement". This morning one doctor said that it could be weeks before they even try to wean him and then 20 minutes later they were reducing his sedation and doing a test run on weaning. Tracy did attempt to breathe on his own which was good but was also quite distressed which caused him to breath too fast and too hard, so they stopped and have now heavily sedated him again. I was happy that they tried and very happy that Tracy tried, but it was also incredibly stressful. I do wish that it appeared that we had one doctor who was kind of coordinating things instead of many doctors seemingly doing their own thing without talking to anyone else. It is also stressful when the nurses change and you have to get used to a new personality again. We will be here for awhile.

Prayer Requests

Tracy is in critical condition in ICU at Cayuga Medical. He was initially brought in for atrial fibrillation. The doctors found at that time that he also had pneumonia and was dehydrated. They were able to get the atrial fibrillation under control and then the pneumonia caused his already damaged lungs to reach their limit and he went into respiratory arrest. The doctors, Tracy's children Hannah and Trevor and myself made the difficult decision to put him on a ventilator to give his lungs a chance to recover from the pneumonia. We have seen some improvements in him due to the help of antibiotics, fluids and supplemental nutrition. The ventilator was difficult to place due to the scarring from the earlier radiation therapy in his trachea. Unfortunately the vent tube cuff had a problem today and they had to reinsert the tube. This was again a difficult and scary procedure. Tonight during a position change, Tracy's heart rate went very high again and his blood pressure dropped considerably. His red cell count was low from this morning was low and they were not sure if the sudden change in his condition tonight was partially due to the low count and they would like to give him a blood transfusion soon. To complicate things further because of the previous stem cell transplant, they are having a delay in getting an appropriate match for his mixed blood type. They are hoping tomorrow to start to try and wean him from the ventilator.

Specifically we need prayers for:

The blood transfusion to start soon and to help stabilize his blood pressure.
A restful night's sleep for Tracy.
For the supplemental nutrition to help raise his albumin levels.
for his glucose levels to fall into the normal range
for the lasix to help clear the fluid in his lungs
for the antibiotics to continue to help clear up the pneumonia
for his other organs to remain healthy and problem free
for the doctors and nurses to continue to give Tracy the best possible care
for tomorrow when they start to reduce the medications that sedates him and to wean him from the ventilator that he is as comfortable and relaxed as possible.
for the weaning from the ventilator to be successful
for tracy to feel the love and support of his family and friends who surround him.

Start of a New Year

The night was calmer than yesterday was. His vital signs are stable although he is still largely unresponsive unless he is moved and then he is not happy. They are keeping him pretty sedated as otherwise he would pull the tubes out.

The plan is that we are treating Tracy with the deepest hope that he will recover. Therefore Dr. Law suggested that we insert a temporary feeding tube as well as IV hydration so that Tracy will have all of the strength that he needs to fully recover. Dr. Law is the most optimistic doctor that has been seeing Tracy and he wants him to fully recover, so I am putting a lot of faith into his judgment. I think he understands based on his email reply what we hope to achieve. He also has been Tracy's primary care doctor for many years and likes Tracy and wants the best for him. I do not know how long they believe is a reasonable time to decide if the antibiotics are helping or not. They are doing another chest xray and arterial blood gas this morning. I believe if the chest xray shows signs of improvement (the last two showed no change) and the blood gas levels have dropped well then that is good news. I do not know how they will decide to reduce the ventilation or if they know how well that will work. Questions for this morning I guess. I hope that when Tracy recovers he will think we did a good job making decisions for him. Trevor and Hannah were actually great yesterday. It was obviously a really emotional day for us all but I think the three of us did a good job. We have formed a new bond that I hope can continue. I think that will please Tracy.