Sunday April 30

It's been a week since I've updated.  

Monday - We finally got to the hospital around midnight.  I got settled and ready for bed.  Colin was already there by the time I got there.  He was camped out in the chair next to my hospital bed.  Woke up Monday morning and waited for the docs to make their rounds.  Dr Gonoza was on call.  He basically said that my counts are starting to trend down and they are going to do some more blood work.  He said that it's going to take a few days.  He consulted transplant infectious disease for their input.  Basically we are waiting.  They are also going to consult a pulmonary doctor as well because of the pain I'm having when I breathe.  

Tuesday - we had a pretty sleepless night.  Colin was up most of the time with me as well.  Bill came in before 7 to check on me.  Everything looks good on my labs.  They are still waiting to see if any cultures will grow.  It takes a couple of days.  Bill left.  I showered and changed my clothes.   The docs made their rounds.  I was told the same thing pretty much.  We are waiting on the bloodwork.  Colin and I spent the day being lazy.  I am having a lot of pain.  I've been taking the meds around the clock between all the new antibiotics and pill changes.  In the afternoon the infectious disease doctor stopped in.  He examined me and went over the different meds with me.  They stopped a couple of times to see how I'm feeling and if it was helping at all.  They don't think it's the pneumonia causing the pain but can't be sure.  He wants to wait and see if the cultures grow.

Wednesday- woke up, got dressed, changed and ready for the day.  Bill came in bright and early.  He went over my labs.  I needed Magnesium and Potassium so he put the orders in for me.  He left and said they would be back to make their rounds.  Dr Gonoza came around and said we are in a holding pattern.  They want to wait for the rest of the bloodwork to come back and go from there.  Colin and I watched tv most of the afternoon and then played cards.  We try to keep busy.  Sometimes it's a lot harder than others.  He decided to make a trip back to Lancaster and go hunting since we are just waiting.  Turkey season starts on Saturday.   We have been doing nothing but arguing so it will be a good thing.  Mom has off work until Saturday so she's going to come to Pittsburgh and relieve Colin.  Colin got packed and left early.  Mom drove and was here in Pittsburgh a little before lunch.   She stopped and got Panera which was a nice treat.  We just watched tv and hung out the rest of the day.  We had leftovers for dinner.  We went to bed after dinner.  

Thursday - woke up, was up all night off and on with all the meds and ivs.  Mom kind of got to see why I don't sleep and i get so miserable.  On top of it all my bag leaked.  I hopped in the shower and cleaned myself up.  I put on a new bag.  I had breakfast and we went for a walk to keep moving.  I'm starting to have more pain.  They can't explain the source of it and are going back and forth on whether or not they should scope me.  They said they would let me know.  Once again it's a waiting game.

Friday - mom is still with me.  She has to leave today because she has to go back to work tomorrow.  The doctors made their rounds and told us basically the same thing.  We are waiting on the cultures.  Dr Gonoza said that he definitely wants to do the scope and that it will be Monday morning.  He said he thinks it's necessary.  He also said he would consult with dr Lopez to make sure everyone is on the same page.  Dr Lopez was in agreement so I'm getting the procedure on Monday.  I called Colin and told him,  mom left after lunch to head back to Lancaster.  They left me here in Pittsburgh.  They might as well do their thing because I'm in the best place I can be.  After mom left I just watched tv.  I of course got hooked on say yes to

the dress.  My favorite!!  I had my dinner and went to bed.  I'm still having a lot of pain.  They are giving me meds around the clock.  Hoping it's a better night tonight and I can get some cat naps in at least.  

Saturday -

Nothing new to report.  I was up all night in pain.  It's getting worse from the neupogen shots.  My bones and joints ache.  Dr Lopez made his rounds and said to prepare for the scope.  He said they are definitely doing it on Monday.  I am in so much pain that I spent the day in bed.  I have to relax and hopefully work through this pain.  I watched tv all day.  I spent the day in bed.  I got up and walked to the nurses station a couple of times.  It was an uneventful day.  Colin called and checked in with me a couple of times.  I keep telling him everything is good and to have fun.  He sent me a picture of a turkey that he and Daryl shot.  He is a pretty big bird.  Im really happy they got one.  I hope he gets another one.  I had a bag explosion again and had to clean myself up.  This whole bag situation sucks.  I cleaned it up, showered again and went to bed.

Sunday - woke up early when they did my blood work.  I was able to get about a four hour stretch of sleep in last night so that felt really good.  Dr Lopez made the rounds this morning.  He said to take it easy today and not over do it.  He is still waiting on results from all the bloodwork and the neupogen shot reactions.  He said he will see me tomorrow.  I called Colin and told him what the plan is.   We don't know a time yet but they said they hope it's first thing in the morning but they can't make any promises.  I'm just going to take it easy today.  Mom is going to drive out after work so she can be here for the procedure so I'm not alone.  She will get here around 10 or so tonight.  They just brought my lunch tray so I'm going to eat now.  I'll try to post after my procedure depending on how i feel.  Have a good day!!  Keep me in your prayers tomorrow!!