I have so many questions...and no answers. For those of you who are Facebook friends and saw my post yesterday, you know that it was a very frustrating day. I have been talked down to as if, because I'm not a doctor, I don't know anything! I am finding that a nurse will try to find the answer to a questions, a nurse practitioner not so much, and a dr. just kinda says "because I'm the dr.".

My notes from yesterday are a jumble, bouncing back and forth, with thoughts and questions mixed in with things going on. Instead of trying to make sense of them, and making this easily readable, I'm just going to type them, to give you a sense of how the day really went.

Nov 2 - Lots of coughing today. Still achy and cold. Apparently stopped breathing treatments yesterday. O2 staying in the mid 80s - finally got to 90. Cut Zyrtek to 5 mg instead of 10 and discontinued Bactrim-again. Ordering xray to see if changing - better or worse - and mild muscle relaxer that won't make him sleepy. Need to see why Bactrim was discontinued from either Dr. Edwards or Chandra or Denise. May need to call Stephanie about that. Cindy ordered breathing treatments to resume. Dr. Fox increased oxygen, looking @ xray. More Lasix IV has been ordered. Why will no-one listen to me?!? The Lasix pull is now affecting his mind. He looked @ the date and thought it Feb 18 (2/18) and that it was almost time for his birthday! Had 1 breathing treatment at noon. Why do those and therapists always show up at mealtimes? I am so frustrated! He really wants to feel better and go home. I know he'll be here through the week-end. Dr. Threlkeld still thinks it's residual pain from that antibiotic, his white count is up but thinks that's from prednisone. Xray showed a little more cloudiness in lower lobes than before so increase in Lasix due to that. He can't concentrate on anything and didn't eat anything except applesauce for lunch. Finally got into chair, walked fairly well at 4, O2 only dropped to 91.

Questions I have - Why taken off Bactrim? Donor heart was exposed to CMV virus and Bill had not been, hence the Bactrim. I asked once about taking him off the Bactrim when we were at Mayo since it can affect kidney function and Dr. Patel said that dealing with the virus would be far worse than treating chronic kidney problems...Is so much Lasix contributing to the muscle pain and confusion?...Would he benefit from the new non-invasive vent at night that pulls CO2 out of the lungs?...What about in-patient rehab, a benefit or no?

Now you have a true picture of how the day went. It's so frustrating when no drs come in. Dr. Threlkeld is the only consistent one and he usually has to defer to cardiology and pulmonary. He just monitors antibiotics. I didn't ask him about the Bactrim interfering with other meds, but it hadn't so far. 

Mayo has the contact information for the transplant coordinators here, and Baptist has her contact information along with all of the Drs. and their information. I can't make them use them, although it would be nice if I could just call them and hand the phone to whoever.

I was asked in an email about inpatient therapy for him that was closer to home. There is one in Jonesboro that most of the local drs. use for their patients. Bill and I have talked about it. I truly think he needs it, even if only a couple of weeks. I reminded him of how much stronger he got in Florida when he was in skilled nursing and that I could still be there every day. The only places here are just regular nursing homes that do very little therapy, so those are out of the question. And, because the internet is so lousy at the hospital, it's hard to do any research there so it falls to doing it at night when I get home, or early in the morning, like now. 

There you have it, a day in the life...I'm going later today, I have some business to take care of and I want to try to vote as long as I can get in and get out. If I'm there right when they open it shouldn't be too bad. So, I will probably miss the drs. again. If Bill's mind was better at remembering things, he could ask the questions and then just tell me what they said, but that won't happen either. I could apologize for the rambling post, but I'm not going to. It's as true a picture as I can give. There are some thoughts that I didn't write down, but they were too depressing even for me to think them, so I left them out. It's kind of like if I put it out there it's true and if I don't then it's just a thought, so we'll leave it at just a thought for now.

Hopefully the next update will not be so negative.