We are home!!!

Sorry for missed posts...I've totally lost track of time and days. 

After my early morning post on Wed,  I managed to go to bed and get 4 hours of sleep.  Lisa was still pretty out of it, spiking fevers, aching and not very friendly.  It came as a big surprise when around 2:00 the nurse informed me that she was being discharged?  Huh?  Back home a temp over 101 was a guaranteed stay.  At St Jude, based on the procedure she had done and there 99% certainty that the fever was due to the antibody they were comfortable discharging her. 

We were released with antibiotics that I had to run thru her line once a day and some Tylenol for fevers.  No pain relievers were prescribed because of her adverse reaction to the meds in the hospital.  Lisa perked up a little bit when we left the hospital and wanted to spend time outside. She wasn't up to walking on her own but was happy to be pushed around in the wheelchair.

Thursday we ended up having the whole day off because they moved all of our appts to Friday.  We slept in, spent some time strolling around and then went to the McDonald house so Lisa could play.  She ended up taking a 3 hour nap. She still wasn't herself.  Not a lot of energy, no appetite and having aches and pains.

Friday morning came with the hope of going home.  We spent 4 hours in the morning getting labs drawn and seeing the docs.  Lisa was not very cooperative at all.  For a place that says "yes ma'am, no ma'am" all the time, Lisa's behavior, shouts of no, and outright refusal to listen made her really stand out.  While I'm certain that they are used to seeing all kinds of behavior, for me, it was very disturbing and frustrating.  She rarely acts like that and it was non-stop.  At 1:30 we finally got the ok to go home.  I had already talked with travel and they had reserved us a flight.  I had 3 hours to get the final paperwork tied up, feed us and pack the rest of our belongings.  Lisa was groggy, in pain and no desire to eat or talk.  She sat in the wheelchair for the whole time dozing.  We left for the airport at 4 and the only time she walked all day was to get into the shuttle.  We needed a wheelchair to use in the airports.  She was hurting too much to walk much further than the ramp.  She slept the whole flight.

She perked up when we arrived and she saw Mike waiting with the car.  We got home around 10:30pm and the kids had decorated and made a cake.  Lisa seemed very happy to be home and she actually ate a sandwich and two bites of cake and then it was back to bed. 

She has spent most of the day sleeping today.  She is still toying with a fever and right now is cuddling up with daddy and watching the Michigan game.  I am pretty much emotionally drained.  It is always hard for me to take her into the hospital walking, skipping and jumping and bring her home a crumbled shell of herself.  I keep hoping she will bounce back in the next day or so and make this all worth it.  If not, Mike and I need to really consider whether or not continuing with this treatment is worth it and really improving her quality of life.  We are do to go back in 28 more days, so we have some time to decide.

Glad to be home, but going to take some time to get back into the groove.