He's Home!!!

After 16 long days, Joe is finally home from the hospital.  The homecoming was anything but smooth.  In fact, it was a disaster.  Before I get to that, I'll update you on what has happened since the last update.  Joe did have the G-Tube stomach insertion surgery.  He could not stop vomiting and so they inserted a tube from the outside of his stomach, into the inside.  It's similar to an ostomy, but not as complicated or intrusive.  He has a tube with different caps to hook it up to a suction machine, manually pump or just have it drain into a bag with gravity.  It isn't ideal, but it does bring Joe relief.  He does not get as nauseated as he was and he has not vomited since they inserted the tube.  Joe is THRILLED with that.  The bad news is they found the cancer is spreading on the top of the intestines, which is causing some of the narrowing.  It is squeezing his intestines which is painful and problematic.  For that reason, he has to stay on TPN (IV nutrition) and clear liquids only.  He is not able to eat or drink anything besides clears.  Luckily cherry popsicles, red jello or fruit punch all fall within this category.  Joe had the hospital staff all laughing because everything Joe wanted was the 3 items above.  They would just tell the kitchen staff, don't bring anything in that room unless it is red.  One food handler brought him a whole tray of red jello and red popsicles one day.  We all laughed! 

The hospital tried everything to make his homecoming smooth, but it did not go well.  They released him around 1:30 PM, with 12 prescriptions, home health care, Pallative care, deliveries set up to the home and pages and pages of instructions.  When we got home, I called all the different companies, per my instructions, to let them know Joe was home.  The girls had all his prescriptions filled so everything was there.  We had everything perfect for Joe.  Then we found out the doctor changed his TPN recipe and we had to wait for a new delivery.  The nurse wouldn't come out until the delivery arrived.  Once it arrived, I called her.  She got called to another "quick" job and didn't end up showing up until 8:00 pm.  She arrived and said she didn't know Joe had a Power port (IV access through his chest instead of arms) and didn't know he had a G-Tube.  She couldn't handle either of those.  She called her boss, apologized and said someone else would be coming out.  Apparently no one was available, and they had to call another company.  That company could do the power port, but not the G-Tube.  That nurse arrived at 10:00 pm and did get Joe started on IV's.  He was going down hill so fast, I thought we might end up back in the hospital.  Then the suction machine delivery got all messed up and they called me at midnight saying they would deliver it between 1:00 am - 3:00 am.  I told them not to bother because there was no one here to show me how to use it.  I just handled the bag via gravity method, emptied, measured, cleaned it and took care of it the way the nurse in the hospital taught me.  So somehow between the hospital staff, doctors, insurance company, home health care companies, everything was a disaster.  Joe and I and the girls were all so physically drained, that it really started to wear on our mental exhaustion.  Lots and lots of tears yesterday, but we are re-bounding today.  Here is a picture of Joe when we first arrived home.

Joe Home At Last

Joe was up throughout the night for various issues, but this morning he did drink some juice, ate a popsicle and even read the sports page.  They are sending a new nurse out at 2:00 pm to start training me and the girls on how to set up IV's, change the TPN, take care of the G-Tube and who knows what else.

On a go-forward basis, Joe has agreed to start the Case Study Chemo treatments. The side effects should be minimal and we just pray it works.  Dr. S. said traditional chemo or any type of invasive surgery could kill Joe at this stage. I have to say that I have never in my life known anyone like Joe.  He is trying everything in his power to fight this nasty disease, despite all that he is going through.  It truly is his family and support group (all of you) that gives him the strength to fight for us all.  Please pray for healing and pray the case study works.  Thank you all so very, very much. 

Love,
Sherrie