Wednesday, July 17, 2013

On The Edge

I've been on the edge of my seat for the past 24 hours waiting to hear if Stephen was going to be re-admitted to CHOP. His visit at transplant clinic went well on Monday morning, but by the afternoon I had received a call from the doctor that his white blood cell count is dangerously low again and they wanted to admit him to the hospital for three days so he could receive three more infusions of the neupogen.  He has no signs or symptoms of an infection and the last thing I wanted to do was to admit him to the hospital, so I kindly asked if we could come up with an alternative solution.  My alternative solutions were two either 1) do the infusions as an outpatient since they only take an hour and I would bring him each day (and stay at The Gift of Life House) or 2) do the infusions/injections myself at home.  Through my fellow-kidney Momma's on Facebook, I had learned previously that neupogen could be given as an injection instead of an infusion, so I asked the doctor if we could do that.  Plus, I feel like this is going to be an on-going issue for Stephen, so we need to come up with an alternative solution besides admitting him to the hospital each time.  The doctor indicated she wasn't aware it could be given as an injection, but said she would conference with the pharmacist in the morning and let me know this afternoon.  And she was really sympathetic to my plight about the need for me to be at work today....finally, someone who understands the need to try to have some normalcy in our lives!!


Luckily, my friends were right! And I can give Stephen three neupogen injections at home and then we can check his white blood cell count next Monday when we're back in transplant clinic! What a HUGE sigh of relief!!  We had so many other appointments scheduled this week (GI nurse, physical therapy, occupational therapy, attorney meeting to do our wills, etc) and not only did I not want to have to reschedule them all but I definitely DID NOT want to be back in the hospital all week or spending the week with Stephen in a hotel room!  The whole "sleep in a pack'n'play" is not really working out so well for Superman.


And even better yet....the new specialty pharmacy I'm using (another Kidney Mom recommendation) is on top of the authorization process and I should have the medication by Thursday.


So bad news we're battling this problem and poor Stephen has to get an injection the next three nights, but good news that we don't have to be admitted back to the hospital. But I don't think he's bothered by this what-so-ever! :)


1 comment:

  1. He sure looks happy and healthy...........and yes, he is Superman, but you are SUPER SUPER MOM! You are an inspiration and very admired.