This to shall end

Just when we thought things would start to get back to normal they spun out of control for us.  We got home a week ago today and for the first few days things seemed to be going along just as usual.  Lots of nausea and fatigue, but that was pretty normal for what Steve had just been through.  On Wed. the nurse from home health came to draw labs and to give him some fluids.  I had left to run kids to soccer and basketball when the nurse called and said that I needed to come home and take Steve to the ER.  He was not making any sense and he was very confused.  I hurried home and headed up to the hospital.  The doctors there were unfamiliar with bio chemo and the effects. It was very frustrating.  It was very scary for me because this was not normal for him. This kind of thing has never happened.  He couldn't finish a sentence or a thought.  He would make crazy sentences and switch words around and even letters in words.  He didn't know what day it was and he couldn't write what he wanted.  They did a brain MRI and chest x-ray, blood work, and an EKG.  All of which came back good and clean.  So they sent us on our way.  AHHH!!! he was still not able to make clear sentences.  They had him sign out and he could not write the date or time.  I looked at the nurse and said, "Can't you see he is not stable and not okay?"  She just said, "We have done all we can do here.  We are an ER so if he needs more help you'll have to go some where else."  I was not comfortable at all leaving with how he was at that time.  I called down to the Huntsman and talked to his oncology team.  They felt like he needed to be seen by a neurologist.  They recommended that I take him down to the University of Utah medical center ER.  So off we went to the 2nd ER for the day.  I took with me the disk of his MRI and his EKG and copies of his lab work so all that wouldn't have to be redone.  When we got down to the U, it was crazy.  We sat and we sat and we sat for over 3 hours with nothing being done.  When we first got there, Steve was doing much better so they wouldn't even give us a Neuro consult like we really needed.  Talk about more frustration!  After about 2 hours of just sitting and waiting, Steve started to lose his speech again.  I asked to nurse to come in and see for herself.  Finally they decided to get a neuro consult.  The neurologist came in and did a series of tests and felt like they should rule out some big things.  By now, Steve had had enough.  He was done.  They didn't seem to know much about Bio Chemo either.  In fact they said they had to look it up and read up on it when we were there.  He had lost all confidence in everyone there.  He decided to check himself out AMA (against medical advice).  Talk about a bad day!! By the way, it was our 15 year anniversary, one we won't forget anytime soon. We got home around 1:00 am.  We were both spent.  Maybe a good night seep would help?  We gave it a day, and when we woke up this morning, things were still not good.  Still couldn't form complete sentences and he was still really confused.  I talked him into coming back to the hospital to finish the tests that they wanted to run but couldn't because he ran.  I called the on call oncologist to see if we could by pass the ER this time and just get admitted.  I was afraid if we had to go the the ER again, that he wouldn't last the wait that is inevitable at the ER. Luckily he mad that happen.  So, here we are back at the Huntsman again.  So far today they have done a chest x-ray, blood cultures, blood testes, head and neck CT, 30 min. EEG, he has been evaluated by the neurology team and is now hooked up for a extended EEG that will last all night.  We have accomplished more in the few hours at the Huntsman than we did all day at two different ER's.  They are just on it here.  There is a chance that we might not find anything but a least we will be able to rule out the big stuff.  We should have more answers tomorrow but for now, we have one unhappy guy who is just so tired of all this stuff.  He has been through so much already and it just seems to keep going on and on.  This to shall end.  It just seems to be an endurance test at this point.