Fun Stuff Since Coming Home

Audrey had such a sweet Independence Day!  We were blessed to have visiting Aunts and Uncles and cousins with us for the celebration, so we had fun attending a parade and having a barbeque together.  I smiled as the float for Primary Children's Medical Center went by during the parade, and remembered how last year the sight had made me cry with a broken heart that my two month old baby was still in Salt Lake without us.

It has been a full two weeks since our hospital discharge!  We have tried to get back into the swing of things, but keeping her medicine on schedule plus getting to her doctor appointments has been a busy job on top of restarting all of our normal routine.  Not to mention all of the planning and decision-making over heading East for her next treatments.

I wanted to share with you some fun photos from our last couple of weeks, and a cute story or two. 

Getting back on continuous pump feeds has been a drag for Audrey.  Literally. 

  

She wants to crawl, and she has this tether attached to her all the time.  If we aren't fast enough to help, she has figured out now that she can crawl to the end of her leash, turn around, grab the cord and pull the backpack closer to her, and then crawl as far as she can again. 

Good thing we have the tube very well secured to her diaper!!  (We are now double pinning it to the thickest part of her diaper, our way of preventing the tube from ever pulling out.)

Getting used to the picc line has been a learning experience.  Every eight hours we have this routine.  First, we have to pull out a medicine "pod" from the refrigerator and let it warm up to room temperature over the next half hour or so.  Then, (after cleaning our hands) we use an alcohol wipe to sterilize the end of her line, and flush some saline through it before connecting the medication pod.  To prep the saline syringe, you have to take it out of the package, take off the cap, and push the air out of the syringe, which is initially kind of stiff.  The nurses usually clear the air out of the syringe by pulling back on it a little, and then pushing out the air.  It is smooth and easy that way, but it occurred to me that if this is supposed to be sterile saline, why are we pulling room air into the syringe?  I learned why.  If you just push the air out of the syringe without pulling back first, the stiffness causes it to give unexpectedly and you shoot out a little fountain about five feet into the air.  My stubborn germophobia has me doing this most of the time, but yeah, it's pretty goofy looking.  The medication pod goes on next, and that little thing is a technological marvel.  The first night we got home, the home health company thought they might have forgotten a pump for the IV med because that was how it was administered at the hospital.  Turns out not so, instead we have these nifty little pods designed by an astronaut that automatically distribute the medication slowly over a specific amount of time.  No pump needed.  At the end of that time, we remove the medication pod, clean the "hub" again with alcohol, flush it again after my little Old Faithful Geyser routine, and flush it one last time with stuff called heparin, that prevents clotting in the line.  I'm going to get that honorary nursing degree yet.

Her home health nurse comes once a week to change the picc line dressing, which is a sterile procedure needing masks, etc.   Audrey amazed her by not crying once during the dressing change.  I even got a huge smile out of her for a photo!

Her labs last week were gorgeous, showing that her infection is well on the mend, and the doctor just wanted to finish out the six weeks of antibiotic to be cautious.  We will hopefully get to have the picc line out when we see him again a week from today.

In the meantime, have a wonderful Independence week!  We have so much to be thankful for in this nation.  I had the opportunity to sing in a spectacular celebration that was broadcast to the troops, and I confess I could not hold back the tears when we sang the National Anthem.  We are so blessed to enjoy the freedoms that we do, to study and express ourselves, to work and especially to worship as we choose.   Happy Birthday America!