Surgery No.8

Yesterday we went to see Dr. Gouw.  Trent was uncomfortable and very tired.  We both were.  It had been  a rough night and we were feeling it.  We had to have labs done before we met with Dr. Gouw but Trent's port was not pulling blood.  It would flush just fine but when the nurse pulled back all she got was the saline she flushed with.  So she put TPA in it to break up what we assumed was a small clot.  It takes a couple of hours to work so she drew blood from his arm and we went to see Dr. Gouw.

The Lasix that Trent had been taking for three days already had not really done its job.  Actually Trent's legs were more swollen than when he started the Lasix and his abdomen was just as tight.  When Dr. Gouw saw that he ordered another week on Lasix and added Spironolactone.  The two drugs together will hopefully pull all the excess water from Trent's body.  Dr. Gouw also suggested a paracentesis, a procedure in which they use a needle to pull excess fluid from the abdomen, guided by ultrasound.  Because the hematomas are causing so much trouble, Dr. Gouw also suggested having Dr. Carr take another look at them to possibly surgically remove them again.  Hopefully putting out these two fires will make it a lot easier for Trent to breathe.

We talked about the other side effects from the Pazopinib that Trent is experiencing.  There really are very few.   His feet are peeling and he has been tired but that is all that can really be attributed to the new medicine.  I had Dr. Gouw feel the area where the sarcoma was growing again on his ribs.  It used to be the size of a shooter marble and very easy to feel.  It is now barely detectable but it could also be being masked by all the fluid on Trent's abdomen.  I am hoping that it really is smaller and that the medicine is working.

After the visit with Dr. Gouw we went back to the lab to see if the medicine worked magic in his port.  Unfortunately it did not.  The nurse decided to leave the little bit of TPA in his port to see if more time would help.  Eventually the medicine metabolizes so it won't be harmful to his body.  We will probably try the TPA one more time in the next few days before they have to insert a dye and scan to see if the catheter is still in the right spot.

Last night was another very difficult night.  Trent was very anxious and needed some soft music, specifically a CD of religious lullabies that was nowhere to be found.  I looked in every conceivable place and couldn't find it.  Finally I found the case but no CD.  Ugh!  I remembered I had uploaded it in iTunes.   It was magic!  As soon as I pushed play, Trent was calmer.  By the second song he was much, much better.  Crisis averted this time.

Today I got a call from Katie and Jan.  They informed me that Trent is first on the schedule for Dr. Carr in the OR on Thursday to drain the hematomas.  They were having some scheduling problems trying to get a radiologist from the U to come do the paracentesis while Trent is under sedation.  But it turns out that Dr. Carr is also a radiologist and can do the procedure himself.  That is convenient isn't it?  I talked with Dr. Carr and discussed maybe putting in drains to keep the problem from recurring.  He is hesitant because that is more stuff that I will have to take care of.  However, I have done that before and know exactly how to do it.  Dr. Carr will make that decision during surgery.  He asked if I had anymore questions and I told him that I did but that he probably couldn't answer them until surgery.  Half in jest, I told him I would love to be in the room so I could peek over his shoulder.  He is going to see about getting a video done for me.  I know it is sick, but at least then I know what is going on and what questions I should be asking.

In the meantime I have turned my focus to more homemaking things.  In my attempt to be domestic again I made suckers for Jarom's cub scout den today.  I misread the thermometer and they turned out like taffy.  I tried again and somehow I burned the next batch.  I really think the thermometer is broken.  Anyway, right after I poured the liquid into the molds, Mallory stubbed her toe on the cabinets and fell into the suckers.  She burned her fingers so badly!  I was worried that we were headed to the ER but as I put her fingers in cold water it immediately hardened the candy on her fingers and it came off without taking her skin off too.  I think we were pretty lucky with that one.  Between her and Trent I have probably filled ten ice packs today.  

I have been enjoying unemployment but am starting to feel the urgency of getting work.  I have loved spending time with the kids and being more available for Trent.  I have even done a couple of crafts (gasp) and it makes me so happy!  I feel a little more like myself and that has been nice.  All I ever wanted was to be a wife and mother and the last few years I haven't really gotten to do that.  I feel like I am more nurse and employee.  I have to come to terms with the fact that my life is not going to be what I wanted it to be and that has to be okay.  I have to trust that whatever my life ends up being is what was meant for me and will ultimately be better than anything I could have planned.