Saturday, February 18, 2012

The End of Week 11 at U of M


Sorry I haven't updated you in awhile but it has been a bit crazy for me.  

Tuesday treatment, number 23, was good and was Tracy's last.  

They also scheduled Tracy to have surgery to put in a feeding tube.  This would allow her body to have the sensation of actually eating a meal.  It also gets that stinking tube out of her nose, which was driving her crazy.

However anesthesia with the ECT treatment in the morning and again with the feeding tube placement, along with a doctors’ meeting at 4 PM, was too much in one day, for both Tracy and me, so I put a stop to the feeding tube for Tuesday.

My brother Ron was the first to show up for the doctors’ meeting, another five-plus hour trip for him (his second in two days). Next came Dan Longo, who had an hour trip, followed by Lisa Harrison, who brought Drew along with her.  The meeting started with the five of four doctors, two social workers, the nursing manager and us.

The meeting went well.  All of the doctors stated their positions and allowed us to ask questions.  The doctor that had said they were through and didn't know what else they could do changed his tune.  All of us had questions for the doctors and I feel they answered them honestly.  I was just kind of awestruck by the one doctor's change of attitude as he was now suggesting that maybe Mayo Clinic, Cleveland Clinic or John Hopkins could be second opinions (actually third).  However there was a consensus that we would stop the ECT treatments and slowly decrease the Ativan (which at the time was six mg per day).  They called it a watch and wait.  

I left the meeting feeling better, but somewhat hopeless.  It was really great to have friends and family here supporting me.  Drew once again made me so proud, as he asked some very thought-provoking questions.

Dan and Lisa returned to Troy to celebrate Valentines Day with their families, while Drew, Ron and I headed back to Tracy's room before dinner.  Thanks again to you guys for giving of your time.  FYI - dinner was at The Blue Tractor and their Baked Mac & Cheese is awesome.  But stay clear of the Deep Fried Mac & Cheese.

We then met Dante Burchi about half way between Ann Arbor and Troy so he could get Drew the rest of the way home.  Thanks Dante.  It was so nice to have Drew here, he is such a comfort to me; Tracy and I are so blessed by him.

By the way, Tracy was not forgotten on Valentines Day; I got her a dozen roses, which made her smile.

Tracy's feeding tube surgery was scheduled for 1 PM Wednesday, but Ron and I were awakened at 7:15 that morning by a nurse saying that she thought I wanted to be with Tracy before her surgery and that it had been moved up and they were already there to take her down.  So out of bed, clothes on and I was off to catch up.  I arrived at Trace's room just as they transferred her to the transport gurney.  We arrived at the pre-op room around 7:30 where we waited and waited.  Ron worked on things in the hotel room while I waited alone with Tracy until Sarah Harfield and Debbie Paquet showed up with cookies, candy and lots of love!

They finally took Tracy in for the surgery around 1 PM and told us it would be about an hour or so.  Ron and I headed back to the room, more work for him and finally a shower for me.  Debbie and Sarah went and had lunch.

We rendezvoused back in the waiting room for Tracy around 2 PM only to wait another 45 minutes before they let me in to see Tracy.  She looked GREAT!  No more stinking nose tube.  She had had a great morning responding to the nurses with and us with smiles and short answers.  The best was when one of the nurses asked her name, to which she responded Tracy without any hesitation.  She also sat up in bed on her own and I supported her for probably for a couple of minutes.

Ron decided to stay another night and I was ever so thankful.  He says, "That’s what brothers are for".  His care for our family throughout this journey has been such blessing and a comfort to us.  He says I am sure you would do the same for me, and God willing I will never have to, but I would.

Thursday was also the introduction of Dr. Robert Paretti.  He is Trace's new lead doctor until Tuesday.  I like him, he is a can-do kind of guy, let's try some things, or as he calls it "we are going fishing".

He has re-ordered some tests and tried some different vitamins and steroids too. 

Tracy slept most of the rest of day and had a pretty good night.  Ron got up Thursday morning and left before dawn.  I hated for him to leave, but had Val Sanger and Janice Crago, sorority sisters of Tracy coming later that day.  This would be Val's first visit and Janice's third visit.

They arrived around 5 PM and they looked so thin and beautiful (description provided by them, but true!) I hardly recognized them.  I quickly gave them Tracy's report and headed home to Troy to spend the night with Drew before he went to our church's student winter retreat.  It was great to be home with him and Murphy and sit on our own sofa.  The sleep was not as good.

I got up and did a little work, cleaned, packed my laundry and dropped Murphy off with the Harfield's.  I couldn't go home without stopping by my SoRoSbux, so that was the next stop before heading into the office.  Suffice it to say I finally arrived in Ann Arbor around 1:30 Friday afternoon.  Tracy was having an EEG so I met Janice and Val at Angelo's, my favorite restaurant.  

When I finally got to Tracy's room she seemed somewhat agitated, not real vocal, but alert.  We stayed until around 6:30, when we went to dinner.  

After dinner we returned to Trace's room where I stayed until 11 PM, Val and Janice left around 10 to give Tracy and I some quiet time, as they said.  I was glad I stayed; Tracy had a fever and I also found out they had inadvertently changed her dose of Ativan again.  I forgot to mention that they changed the Ativan from 6 mg to 4 mg on Tuesday evening. They don’t like to decrease a medication by more than 20 percent at a time, which that change did. The nurse was just following orders but contacted the doctor who agreed that it didn't seem right and ordered and extra 0.5mg until the morning when the lead doctor would be in to sort it out.  Before I had left Tracy's fever had subsided almost a full degree and was only slightly elevated.

I returned to the Med Inn met with Janice and Val for a while and then headed to bed with my sleep meds.     

I will close here for now.

God Bless and "Never Give Up... Never Ever Give Up!"
Rob

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