Day 5 Was Not the Best in Boston

This morning Nate left.  Boo on that.  He was really great to have around.  We woke up to several voicemails from Trent's Dad.  Trent had been trying to call me last night and I had left my phone in my coat pocket that was hanging in the closet so I didn't hear it.  Trent was panicking.  One of the nurses had asked him why he had Lasix on his medication list at home.  She said it is prescribed for those in congestive heart failure.  That threw him out of whack.  The nurse didn't happen to notice the "PRN" on the med list-meaning the Lasix are only taken as needed.  So Trent thought she said he was in heart failure.  He had so many drugs yesterday that they have not fully cycled through and he is still loopy.  So everything he hears gets skewed in his mind.

Trent is still having trouble gripping things and therefore I have to spoon feed him.  I am not sure how many glasses of ice and juice got spilled on him today.  He keeps trying to do it himself and it always ends up in his lap.

On rounds Dr. Sugarbaker told us that because the tumor in Trent's lungs has invaded the pericardium there is no use in doing the lung surgery right now.  We are being referred to Dr. George, a medical oncologist and Dr. Benhini (or something like that), a radiation oncologist.  Hopefully between all three doctors, they will come up with a plan by Monday.  Right now I have a million questions but no answers.

Trent has been having regular chest x-rays since the surgery yesterday and today they found he had a pleural effusion on the right lung.  So they did an ultrasound so make sure.  They also did an ultrasound of the left arm and did not find a clot.  When we got there this morning his arm looked much better and felt a little squishy like a normal arm.  After the ultrasound on the right lung they "tapped" his pleural space with a long needle (they went in through his back) to remove fluid from around his lung.  The ended up taking out about 400cc of fluid.  After that was out Trent was able to breathe much better.  He has been doing breathing treatments every six hours and that seems to loosen things up a bit so his coughs are much more productive.  He suctions out his own mouth when he coughs and I have to say, that sound is pretty gross.  They removed one chest tube today and that lessened the pain a little bit too.

Trent was able to get up today to walk around a bit.  They have these cool rolling walkers and then a nurse walks behind him with a chair in case he gets tired and needs to sit.  He was doing really well and was able to take two laps.  The whole time he was saying, "I will beat this, I am never giving up."  That attitude got tired when he did. 

Not a great picture but that is what he looked like all day long.

 Toward the end of the day Trent was pretty agitated.  He was mad because a radiation doctor came to speak with him and I was not there to hear it and he didn't understand what he said.  I was out in the waiting room trying to let him sleep and not bother him.  So because I missed it, I was on the outs with Trent.  I asked the doctor to come back and repeat what he had said, which he did.  I didn't miss much.  Trent is feeling frustrated that we keep getting bad news and there doesn't seem to be an end in sight.  Honestly, when they first said that chemo was back in the plan for us, I wondered if it was Heavenly Father's way of sparing Trent's lung.  Maybe the chemo will shrink all the tumors and we could save at least a part of Trent's lungs.  Who knows?  I tried to take the positive spin but Trent was not listening.  He doesn't want to do four more rounds of chemo.  No one has ever said anything about how many rounds yet, he just picked a number out of the sky.  I told him he only had to do one, then one after that, and so on.

Sometimes it is exhausting to be positive when I just want to scream, "How much longer can we do this?"  It kind of took its toll today and Trent was being impatient with me and that hurt!  I was really bugged.  So I decided it was best if I left.  I cried for about 3.2 seconds and that was it.  I don't really have time to cry.  I can do that later.  Right now I have to make sure I know EXACTLY what is going on with Trent's treatment and what questions I should be asking.  I left a note for Trent's nurse that under no circumstance should a doctor consult with him unless I am present.  Trent never remembers what they say anyway.  I guess the days of leaving him alone to sleep are over.  I am going to camp out in his room all day.

Today is a day I am glad is over.  I think the week is starting to catch up to me and I need sleep! Hopefully tomorrow is better than today.