Reality Check

Again, I'm so sorry that I've been absent from blogging this past weekend. It came to my attention through a couple of family members and then friends that dad was doing really great and things were going well. - I had a couple of conversations with mom and had to have time to figure out how much info to provide and how to give a realistic view of what is actually going on. It is very difficult for me to do so - much harder than I expected. Dad is still doing about the same and continues to make small steps forward and sometimes small steps back. I don't want to concern or depress anyone - but I do think it is important to give a clear view where dad is at and what the immediate future looks like. First and foremost - I don't want to hurt dad by giving more information than he would want given - but I feel some information is important for all to know.

Dad continues in the Pulmonary ICU at the U of M Hospital. He is totally bed ridden and all that entails. The nurses give him daily baths, clean him, brush his teeth, wash his face and neck. They change his bedding, his gown, and any other physical needs he has. He is hooked up to a respirator through his trac and is unable to speak so he can't say 'go away I want some lone time', 'get out of my hair', or 'I really need a beer.' For the most part dad understands what is going on around him - but does at times get confused. Some of that confusion has to come because he is unable to ask questions to get his own clarification. He experiences a lot of aches and pains and some days prefers to be sedated so as to not have to deal with it. There are times when he asks mom for medication for pain - but when the nurse comes in he says no. They have staff that come in regularly to help move him on the bed to keep from having bed sores (over 4 weeks in bed now). When they bring dad out for Ultrasounds, CT Scans, X-rays, Surgery's - - - it takes a BUNCH of people to get him to and fro. There are several towers with meds on them that need to be brought, one person just needs to use the vent bag to keep dad breathing, then the people who actually push the bed - - - It is an entourage fit for a wedding party! Doctors, residents, specialists, nurses, technicians, therapists, etc. continue to stop through out the day to do what ever they do. The other day a doctor looked over every inch of dad to be sure there wasn't a tick (bug) or something basic they had missed. She even said with all the baths and stuff there shouldn't be - but she had to be sure. (I think things like that have to be humiliating for dad.) Dad can not: Lift his head (he can roll it from side to side), his arms, shoulders, legs, or feet. He can't twist or move just enough to get comfortable. Mom and the nurses try to make him comfortable - but sometimes within a few minutes it isn't just right and there is nothing he can do about it unless he wants to go through the process of trying again. Most all of you reading this know dad pretty well. He is definatly one to be in the background working or helping - not one to draw attention to himself or ask for help. Because he can't move - he is still unable to use the call button for help. Some people have been wondering why mom is staying there and why she doesn't come home for a few days to regroup. Mom doesn't even feel like that is an option for now. She leaves for the evening and night - but usually dad is sudated and sleeping when she leaves. During the day he can't use the call button if he needs help or is in pain. The chemo treatment he is on - it make him naucous - he had no way to tell someone unless they can see his face. Again - there are doctors, techs, nurses, therapists etc. coming in and out all day. Some have questions and others have information for the folks. In the last couple of days mom has signed a number of permission forms for some procedures they are going to be doing. She just needs to be there until dad can advocate for himself - which is going to be a while yet.

I know that is a lot of info to process and it is not a pretty as a picture I usually paint - I just need everyone to know that when we say dad is very sick - it is an understatement. When I say I'm proud of mom and she is doing an unbelievable job - I really mean it! And when we ask for prayers - they really need it and really feel it or they wouldn't be as strong right now as they are.

Today there are a few things going on. They are going to be putting a filter on a main vein / artery to prevent clots from going to his heart or brain. Then the will be taking him off the heparin so they can do a colenoskapy - or something like that. They are STILL looking for a cause to what is going on with dad. They are continuing to treat him for the Vasculitis but they aren't sure if that is actually what it is.

I have to head off to work - I'll check in with mom after lunch and give an update for how the procedure went - sorry this blog was more of a downer than most. I don't plan to do this very often - We just wanted everyone to be back on the same page and know that we have a long fight ahead of us. The MAIN prayer for now is that dad needs a diagnosis so we can begin to treat him and get him heading on the road to home!!!

Much Love to All from Mom - thanks for your concern, thoughts and prayers!