Thursday, August 29, 2013

coming home

2 months and 5 days ago my life changed.  When we found out Capris diagnosis we prepared for her death.
Day 1- She was purple, not breathing, lifeless. she was intubated and rushed to primary's
Day 8- She had her first heart surgery, placing a cathader into her heart and stretching out her pulmonary valve.
Day 28- She went into SVT then Vfib and had to be shocked twice and given CPR
Day 30- Her oxygen dropped down into the 50s, she was grey and lifeless, I thought we were going to lose her.
Day 40-We were told Capri had MRSA and needed to be moved to an isolation room away from all other babies
Day 50- Capri is being released from the hospital and will get to come home to be with her family.

In 50 days our world turned upside down, we were told our daughter was going to die and we needed to prepare for that.  We watched her suffer, cried at nights wondering if she would ever come home.  The thought of her coming home was something that I didn't think was going to be a reality.  But we are here and she is coming home.  Miracles really do happen.

We spent the day at the hospital "rooming in"  We learned how to use our oxygen tank, feeding machine, pulse ox machine, and stethoscope.  We discussed Capris future and signs of heart and liver failure.  We met with the pharmacist who showed us the extensive amount of meds she will need all day and all night long.  I have wrote these on a white board in our kitchen, have it posted in our room, and have it in my phone with alarms going off every 4 hours to administer them.  Trying to hold the syringe with the medicine, while kinking the feeding tube and opening the medication tube, then getting the medicine in there without it all squirting back at me is quite the experience.  Im sure it will get easier as time goes on but i sure could use a third hand.

After looking at all the meds, listening to the doctors talk about the oxygen tanks we will need every month, all of the supplies for the feeding tube and cannula, it made me very grateful for Mikes job.  He works at such an amazing company that cares about their employees and their families.  They have great insurance that will help us pay for the massive amount of medical bills we will have in our future. His boss has been so understanding, letting Mike take time off to be here to help me while we figure all of this out, I cant imagine going through this with some of the other places he has worked at.  Im worried about me going back to work in October.  On one hand I have to because we cant afford for me not to, but on the other hand I don't know how I am ever going to leave the house with all of this equipment let alone figure out a babysitter or a way to have Mike leave earlier and I work later so we don't need to have a sitter.  Why cant money grow on trees so that wouldn't need to be a factor.
In the end we will figure it out and make it work, we always do.  Capri is alive and she is coming home.  Nothing else matters