Ohh....big sigh

Wow, I am wiped out!!

We got to the hospital at 7:30 yesterday morning and didn't get to leave until after 6 tonight!  At around 5:30 the hospital went dark.  Completely dark!  A power outage.  When we left at around 6:30, I noticed that the stop lights weren't working but then I noticed the traffic.  Rush hour traffic times 10 since none of the traffic lights within several blocks of the hospital were working.  It took forever for us to get anywhere.

The entire morning was spent in Immunology clinic going over and over symptoms of each one of the kids.  Shelbie's immune system still hasn't recovered from Chemotherapy two years ago.  She will need to remain on IVIG or a new option SCIG.  SCIG is the same medication as IVIG only we would do it at home once a week.

It consists of two needles that are placed subcutaneously in her stomach then the plasma is pumped through.  They brought me a box of literature.  Literally, a 3" thick packet of things to read about this drug.  They insisted that she have a test run tonight.  Shelbie was not at all happy about that,  Not in the least but the nurse who came in to do it was super sweet and talked with Shelbie a long time before starting the procedure.  We have a few days to decide if we will make the switch.

The advantage to SCIG is that there are virtually no side effects.  A little soreness and itching at the site of injections but that's it.  No ER visits and meningitis.  The disadvantage is that she has two needles once a week instead of one IV once a month.

I can tell already that this will be a long, long post so I am going to break it up in several posts and just cover each kid individually.

Today is biopsy day!  I hate the schedule today.  The kids are all going in a few hours apart from each other so they will be scattered in different rooms most of the day.  I don't know how I will juggle it all but somehow, it will work out.  My sleeping patterns have been a mess since being here. I can't fall asleep until after midnight and I am wide awake at 4:15.  I try to go back to sleep but the combination of anxiety and pain is not conducive to sleeping.  Such is life.


  1. sounds like a touch decision. But I know you guys will make the right one, you do such good research on everything and you know your kids. Hope the test run went well. Good luck! you guys are in my prayers!


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