We're Coming HOME!

We are FREE!!  Owen broke out of the hospital around 2pm on Wednesday.  It was such a busy day.  We had to pack, do a ton of paperwork and I had a refresher on the Milrinone pumps.  We finally made it to the RMH in time to settle in before dinner.  We were originally going to stay at a hotel nearby, but it turns out all the sick people from RMH were sent to the same hotel.  No thank you.  At least I know our room at RMH is super clean as I have lived here for four months.  Owen was super excited to explore outside and see his friends. We spent the last two days driving around, catching Pokemon and enjoying the amazing weather.  I can't put into words how wonderful it feels to be outpatient! 

I realize I have been spoiled inpatient with pharmacy preparing all his medications.  Thanks to Stacey for bringing me an extra pill cutter at night because mine was crushing the pills instead of cutting them.  The resident that ordered the meds wrote some random dosages, so I was cutting a lot of the pills into quarters.  We got that issue resolved!

The pharmacy that delivered all the infusions supplies brought a "fanny pack" for Owen's Milrinone pump, which is just not gonna cut it.  I called and ordered a small feeding pump backpack from his Gtube supplier and that should be a much better option (I'm hoping).  

Carson is flying up tonight to help me pack up the car and he'll drive home tomorrow.  I got rid of so much stuff and my trunk is still overflowing!  We came here with one suitcase on life flight.  Where does all the STUFF come from?!

We had labs this morning which Owen was super anxious about. He hasn't been poked in over four months which was a great break, but now we are back to frequent labs.  He was amazing and we got the blood and his levels were all perfect!  We went to the treatment room and had vascular access do a PICC dressing change and got the hook up on his favorite supplies.  We then headed to transplant clinic .. all vitals are stable and his weight is creeping up.  We saw Dr Bernstein and he gave us the go ahead to go home with a promise that we will call for anything.  We will be back in a month for a clinic visit and will followup closely with his AZ team this week.  

We fly home to Phoenix first thing tomorrow morning!!!!  I could just scream with excitement because we are so thrilled!  What an incredible blessing.  When Dr Rosenthal brought up the idea of going home I may have thought he was crazy for a second.  I slept on it and still didn't know if we were making the right decision, which is why we called a care conference.  It felt right and everything fell into place.  Now that we made this decision, it feels SO right!!!  Next time I post, we will be HOME sweet HOME!