On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Wednesday, September 29, 2010

Busy Times & Line Repair

Things have been busy.  I apologize that there haven't been updates on Erin's progress in the last two days.   I have been having a hard time finding time to write.  It seems that the three days that John and I are home together I just cram every minute with all the things I need to do for the entire week.  I really appreciate all of you who have brought in meals.  Seriously, just eliminating the time to cook has give me more time to accomplish other things.  Thank you!

Erin is doing better.  The blood work drawn today from her central line showed no sign of infection.  That is good!  Hooray! The sores on the top of her head are also looking much better.  My mom took great care of Erin for the past 3 days.  Her hospital room is nicely decorated with some window cling pumpkins and some streamers lining the cork board.  I made a big crawly spider in the parent break last Friday and it's stuck on the door by the window to scare away infectious things.  I also brought some window clings with me of fall leaves to put up tomorrow. 

Erin is currently taking a few medications through her IV.  She is taking Vancomycin (antibiotic) Fortaz (antibiotic), and Caspofungin (anti-fungal).  She is still taking Septra on Mondays and Tuesdays to prevent pneumonia.  She will take Septra until a few months after she is done with her 5 rounds of chemo.  She is taking Claritin orally before she goes to bed to alleviate her slightly runny nose so that she can sleep better.

Tonight was a bit of a scare.  My mom and the nurse found some blood on the floor and blood all over Erin's top and they realized that her central line had broken.  Again.  The tube was just hanging on by a little thread of tubing.  This makes the 6th time her line has been repaired.  The nurse clamped her line.  They had to take the dressing off of her central line, the head nurse repaired the line, then our nurse put on a new dressing and now Erin is asleep.  It wasn't as easy as it sounds though, because Erin was kicking and screaming through it all.  The nurse had to cut the tube off where the two tubes come together.  We have to wait 4 hours before we can make sure that her line is working.  So, at midnight the nurse will check her line and then we can start up all her medications again since they can't run through her line during the 4 hour break while the glue on the line dries.

Oh well, things are hard sometimes.  I have set myself up to expect that things will happen so it doesn't get me too down when something bad does happen.  Hopefully we only have less than 2 months left of this and hopefully her line won't need to be repaired too many more times.  The more they repair it, the higher they have to repair it.  Eventually they sometimes have to just take the line out and surgically put in a new line.

John's dad was scheduled for open heart surgery today (his second one) in Las Vegas, Nevada, but there was a hang up that two of the suction machines weren't working so the surgeon re-scheduled the surgery for Friday.  His father was in the pre-op room when he found out that they were going to postpone his surgery.  Please send prayers to the Hughes family for John's dad to have a successful surgery. 

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