Ken is tough

It is Tuesday, almost lunch time. I have been talking to doctors and family all morning. We have a new lung doctor this week. She saw Ken yesterday and today. She is an associate of Dr. Clark, so she has been aware of Ken for a while. Today she is suggesting that we insert a tracheotomy in Ken to give him relief from the standard respirator. I have been so confused. So let's start back a ways and see if I can make sense of all this for you.
Ken has had a battery of tests, blood test, lung washes, biopsies in surgery, all kinds of things they are checking. He has only so far had 1 test come back with positive rhino virus (common cold) and Dec 3rd as positive for a fungal infection. But no other positives. So today, Dr. Matous, his oncologist, talked to me more about what Ken is going thru and what to expect. They suspect and are confirming by order of elimination that Ken's lung issues have been caused by the bone marrow transplant. Before when he was on the respirator, he responded well to the high dose steroids and that is typical for these kinds of lung issues. So, he responded, they lowered the dose and got him off the respirator. Then he was sort of ok, but slid back and was having trouble breathing again. He stats went up and they had to put him back on the respirator. You know all that. But today, Dr. Matous is telling me that this time, they are putting him back on high dose steroids and they expect and hope that he will again respond well to them. But this time, they are going to be slower about bringing him back down off of them. They will go at a much slower level, so he will be incubated on the respirator for quite a while longer. I said 2 days, 2 weeks, 2 months??? The doc said not 2 months, but maybe 2 or 3 weeks. Wow, that is hard to wrap my brain around. He is not very comfortable like this. However, they just found some more proprovol and have hooked it up. So they can get him off some of those other pain meds that they were using to sedate him. He should do better on proprovol. Yeah. So, back to what they are going to do next. His lung doctor, suggested that we put in a tracheotomy for Ken. She said they don't usually do it till day 14 - 21 in respiratory patients. But since Ken was on the vent for 8 days before and this is day 3 this time, and it looks like he will have to be on it for quite a while, they think it best to put it in earlier than later. So why the trach? With it instead of the respirator that is down his throat, they will still be able to control his breathing and help his lungs. It will still be a respirator breathing for him, just thru the trach instead of his mouth. He won't need as much sedation, he will be able to learn to talk (though not right away) and he will be able to work with physical therapy. If we left him on the respirator, he wouldn't be able to talk, there is some risk of the longer the tube is in, it could damage his vocal cords and his trach tube could swell and become infected. Plus, off the respirator and onto the trach is more comfortable for the patient. Things move fast here. They just sent the surgeon into talk to me and explain the procedure. They are considering doing it at his bedside this afternoon. So, it is my decision. Wow, how do I know what to do. I couldn't make this decision alone, so I called Dr. Weyant, his surgeon from Univ of Colo hospital. Dr. Weyant did Ken's thoracic duct ligation in April and Ken and I trust him. I wish he were taking care of Ken now. But I talked to him twice on the phone this morning and he agrees that this procedure would be the best for Ken. He says that with the trach, Ken would actually be able to breath easier and when he starts to breath a little on his own, it would be easier. So he would probably get off the vent a little faster. He also told me to be encouraged that since Ken was able to get off the respirator once before, he should be able to do it again. It may take a few weeks, but he should be able to get thru this. Let's hope so. I just feel like we keep sliding backwards because they keep putting his recovery back farther. I now have to learn to look at the whole picture. And that picture is that I want Ken to heal and come back to us. It shouldn't matter how long it takes.
I am a little scared as to what it will mean for me. Ken hates to wake up and not have me here. I realistically don't think I can stay here 24/7 for 3 more weeks. Can I? Will I be able to do that and not go nuts? That is so minor compared to what Ken is going thru. I feel so selfish thinking like that, but the counselors here keep telling me to get out and do things for myself. I want to see Norah when she gets here tonight. I can't wait to see her.
So, I am going out to lunch while Ken is still asleep. I need to check into my new hotel. They are doing the procedure later this afternoon. Then we will see what happens after that. I hope they will keep him comfortable and sedated for a day or so while he gets used to the new trach breathing for him. Then I hope he understands when they wake him up what is going on. I just want this to be a step in the right direction. So I will let you know how it goes. They are going to do it in the room, so I guess I get to watch. Maybe not. They are going to use the same incision they used in March for his biopsy, so there won't be 2 scars. I'll blog again tonight to let you know how it went. Till then, hope you are eating some fun Christmas cookies. Enjoy your day. Bev