Going down

Dr. Law must have ESP and I do not know what I would do without him. He calls from home to check on us - truly a caring doctor. I told him basically what I told Alan and he was able to access today's blood work online. The CRP and white blood count are both up indicated inflammation of some kind. It could be bacterial or a virus. He called in a heavy duty antibiotic and it has been picked up and started on tonight. The good news is that both the red blood count and the albium both continue to rise. The albium is a general sign of over all wellness. A low albium is a bad prognostic sign and when Tracy first went into the hospital his was extremely low. Today it was very close to normal. The red blood count also had been quite low in the hospital and it also is up. I still do not like where we are at the moment. I still am scared. But my heart is not quite as heavy now that we have a plan on board. Dr. Law said to expect improvement in a day or two with this antibiotic. I hope Tracy can keep his spirits up and be able to fight for another chance.

Not doing so great

Tracy is not doing so great. I think he is glad to be home. I certainly am glad to be home. But physically he is doing poorly and in turn it is hard to remain positive. The appointment at Cleveland Clinic is March 9th. I hope that goes smoothly and he can get on the transplant list ASAP. At this point however I am not sure how we will ever make it there. Tracy is not able to get around much and he still does not eat enough to maintain weight so is very weak. I think it has become a vicious cycle as he will never get stronger if he is unable or unwilling to try and exercise a bit or eat something. I do not see how I will get him to the car much less to Cleveland. Maybe something will change in the next couple of weeks. He is also worried about going on long term disability although that is the least of my worries at this point. The LTD is set to start about the same time we go to Cleveland.

Tonight

...has not been especially great. Night is really hard. Tracy really does need to be on a vent at night, because of CO2 build-up but that means long-term care facility and no Cleveland Clinic. He is disoriented and not very nice. Luckily not very strong either so his threats are idle as far as I am concerned. Today though he said again that he thought he was dying and this time I should not try anything heroic. I asked if he thought he should be in the hospital and he responded with an adamant no. I do not want to be there either. He is not eating or doing the breathing exercises that would reduce CO2 build-up. Exercise is not top on his list either. This is so incredibly hard. Regardless, I am glad to be home. Two of the nurses that liked us and live near us stopped by last night which was nice. They said they thought Tracy looked better and for us to not expect too much too soon. So maybe I am just reading too much into everything.

We are Home

We are home with lots of supplies, machines and instructions. I am scared that I will not do a good job but so glad to be out of that place. Dr. Law referred to it today as the "Tower of Doom". I want not only for Tracy to be well, whole and happy but to also take great immature joy in saying I told you so to the naysayers at Cayuga Med.

Home Sweet Home!!!!!

not going home

I am not sure exactly why the vent needed is not approved for home use. I did not even know that the FDA had to approve vents for home use. But, there is not a company that will supply one that we need for home use. The machine that they use here at the hospital is first of all not insurance covered, not approved for home use and a cadillac model of vents....several thousand dollars. So it is not like I could buy one privately and figure it out myself :). There are CPAP machines for home use, but just not ones that go with a cuffed trach. They can not take the trach out or go with an uncuffed trach nor can they use a mask type CPAP because the air would just blow out the trach and never reach the lungs.

Tracy has said that he will not go to a long term care facility...that he is finished if that is what the rest of his life looks like. I do not blame him, I would not want a future of hospital living for the rest of my life either - it would be like prison.

adam said this morning he was seeing what else he can do or other options that might be available. He was even somber this morning as we got this far and now very slim chance of ever coming home or having a quality life. For reasons that neither Adam or I understand it is possible the type of trach that Tracy needs now will disqualify for him lung transplant even though having a new lung would make it so that he does not need this type of trach. He probably will always need a trach due to the radiation therapy damage to his neck area. But he could then have an uncuffed trach and not a cuffed trach which apparently makes a huge difference to lung transplant people.

How is he doing?

I really do not know how to answer that anymore. I sometimes see improvement, but lately I wonder what I have done with my decisions. His breathing is still very labored so I am beginning to think that Dr. O'Mara was wrong that he would see some improvement in quality of life with just the tracheostomy. The peg tube placement went fine, so Tracy will get calories even if he does not feel like eating. It has been 40 days and so far we have just seemed to make things worse for Tracy without much reason beyond a lung transplant to be better. From what I have read, it is likely that Tracy will not be accepted for the program until he gains about 20 pounds and that is the least of our worries. His history of CLL and also the ankylosing spondylitis may make him not eligible either. I think the diagnosis of Graft vs Host disease might hinder his chances also. I think one of the reasons the doctors at Strong have been dragging their feet on him getting on the transplant list is that they do not think he will be able to get on the list. It could be four weeks before we even know if they will consider him for evaluation for transplant. Then there is a lot of testing that has to be done that would take several more weeks. So at best we do not know if he is a candidate for another 6 weeks. Then it could be months before there is a match.

Tracy is also going to have to really work to get better. I do not know how much work he is wanting to do. So far it does not seem like much. He is still very weak, but laying in bed is not going to help that. I really can not tell if he does not want to be better or if he is still just sick. I don't want to do tough love and start sleeping at home if he really needs someone up here.

Apparently his white blood count went way up yesterday and that is a good indication that the infection is not any better. That will also keep him off of a transplant list. He has lots of confusion during the night making sleeping impossible for us both. The confusion could either be drug related or infection related.

We both have said that we would not want extraordinary life saving measures if there was no hope for quality of life. I wonder if I went too far.

:(

we are back in ICU :(.

And yes you oh so very nice nurse Linda, I am crying again today. That was nice of you to point out in disgust to your fellow nurses. Why does it bother you so? Have you lost all compassion? I have been here nearly 24 hours a day for 35 days trying to help and love my husband. Do you not think I see how sick he is? Do you not know how scared I am? Do you think after what I hear you nurses say (and you do not really bother to say it behind my back) that I trust to leave him in your care for a second? I do not want to be back in ICU with people like you to care for him. That makes me sad that I have to. It makes me sad that my husband is suffering. When I am sad, I cry. So sorry.

Day 35

Tracy has a new infection of at this point unknown origin. He is very weak, tired and does not have an appetite. He is on multiple drugs to help his appetite none of which seem to be working. I have been told by Dr. Law to make him walk even if just a few feet several times a day. I am trying, but apparently my powers or persuasion are not as strong as his weakness.

The antibiotic is prescribed to run until 2/8. It is our desire that we leave the hospital on that date and handle things as needed at home.

I need prayers for this antibiotic to kick in, for his appetite to improve and for us both to have the stamina required to get over this illness.

Mica