Please Pray

Monday, when we had an appointment with our doctor she said, first of all, that they would call us.  Second of all, she said that if she went the route of using the cefotaxime that a PIC line would be put in.  I hadn't heard from them so I thought I would call the messaging service to see if lab work was in. There was a message that said that the "CD4" was 18, "which is low" she said, and reiterated that we want it to be 180 to be in remission.  I don't know why she called it CD4 and not CD-57.  More importantly, if that is our level then we have gone backwards and it is worse then when we first started treating this disease.  She then goes on to direct me to "continue the cefotaxime as an IM injection and continue the doxycycline". What? No mention of flagyl, the other antibiotic.  So, I am confused and frustrated, but still enjoying my IV free day :)

You are probably saying, "call them and get clarification". Yes, that is our first response as well. However, the problem is any time we have called to do anything other than make an appointment, we hit a brick wall.  If you want to speak to a nurse or any person in the office, they take your information and say they will call you back.....they have never called us back.  Thats if you are fortunate to get a warm body to answer the phone.  One time, Chris called and left a message on the message machine, someone called him back but then said they couldn't talk to him because he wasn't the patient.  So, they called me and when I asked for clarification I was told that if I had questions I needed to make an appointment. 

You might say, "so make an appointment"....yes, thats really our only option. Keep in mind that appointments are made for the next day and any appointment not on a Monday takes Chris from work and it is a pain to figure out what to do with the girls. I can't take them or I don't concentrate (if you're a mom you will some idea of what I am talking about) and honestly, neither does Chris because he's trying to help me out.  

Right before I was going to call her office, a nurse from Quality Infusion called to check on how the IV "yanking" went (my words, not hers :)  ).  I told her we did the dose first thing yesterday and then pulled the IV. She laughed.  I explained the "message" from the doctors office and she said "absolutely not. Do not do the injection. You tell them you can't". Its so nice to talk to someone who knows how you feel.  I explained that the telling them wasn't the problem, its getting a hot body on the phone to tell it to that was the problem. She agreed and encouraged me to make an appointment.

I called and explained that I either needed to speak to someone to get clarification on lab work or I needed to make an appointment for as soon as possible to get clarification on lab results and instruction left by Dr. Salvato on the messaging system. The lady said, "I can take your information and leave a message for someone to call you back or you can make an appointment". I explained that every time I have left a message requesting someone to call me back, no one ever did. She preceded to schedule an appointment and the earliest they can get us in is Tuesday at noon.

Good news is I am IV free till then but the bad news is our levels are lower and thats five days without IV medicine, the only medicine that has shown signs of working.  We could go ahead and do injections till Tuesday but then thats less medicine to use as IV and we lose 50% of the medicine each time we inject it.  

Please pray as we make arrangements to go Tuesday.  It is VBS week at church and so Chris is super busy and for him to get away during that time will be extremely difficult.  I would go by myself except that I need someone to go with me to be my brain since I don't remember well and I don't process what I hear well.  Even right now, if it weren't for Chris agreeing with me, I would be second guessing that I actually heard her say they would do the PIC line if she chose to use the Cefotaxime. I just listened to the message again and she doesn't say "cefotaxime"...she says some other medicine.  I have a made a list already of questions including asking about the ultra sound done on the gallbladder. It was never discussed with her and we left her office Monday completely forgetting to ask her for more clarification on that.

Till Tuesday, I will do my best to not dwell on this but enjoy the days I have no IV.  The only way I can put it is I feel like chains were taken off.  It feels good to be "free".  The girls are going to spend the night at their God Sister's place tonight and Chris and I are going to an Astros game with our church.  Then, tomorrow I get the opportunity to witness Chris help one of my best friends renew her vows with her husband.  No better weekend to be IV free.