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At the Moment...

February 3, 2013
I just consumed what seems like my one thousandth grilled cheese sandwich on 12 grain bread in the last three months.  Lucy and I headed out on an adventure to leave a special Valentine on the office door of our special friend Andy.  Sadly we couldn't get to Andy's office so we changed course and headed to the cafeteria instead, but not without first sending our special Valentine through the hospital mail system :).  This adventure is only the second time in three months that our girl has wanted to go for a walk in her wheelchair, it hurts her to sit for too long.  Getting Lucy in her chair is an adventure in and of itself that takes longer than you could ever imagine.  Since we made all of the effort to get out I sucked it up, sacrificed my taste buds, and headed to the cafeteria where I ordered, you guessed it, a grilled cheese sandwich on 12 grain bread with french fries so that the world's greatest french fry licker could lick the one or two, if she is really daring, french fries that she so loves.  While waiting for our order several of Lucy's pumps starting beeping and alarming alerting us that our adventure was coming to an end.  When we returned to the floor we discovered a crack in Lucy's TPN tubing that most likely happened the night before while changing out her TPN.  Great, here's hoping that no bacteria snuck in while we weren't looking and that we have enough TPN left to last us until 8pm tonight when we change TPN bags again.  We replaced the cracked tubing, reset her pumps, put her back in her crib, hooked her back up to everything: wall oxygen, pulse ox, cardiac monitor, apnea monitor, blood pressure cuff, and called it a day.

Lucy is now sleeping and I am relishing the quiet of the afternoon, well as quite as an afternoon can get in the hospital.  We are currently drowning in the sea of uncertainty, but are working towards scheduling another ERCP with placement of a permanent metal stent.  Where and when this will happen, we are not sure of that just yet, but when we know I'll let you know.  In the meantime, the biggest gun antibiotics that we have available are keeping the infections at bay... for now.  We have what seems like a million obstacles in our way, but I have faith that things will work out to be in Lucy's best interest.  Like I have mentioned, we are so blessed to have so many who know and love our girl.  Everyone wants what is best for her, it is overwhelming in a good way!

I am so thankful for dry erase board books (thanks Janice & Jules!), Crayola Color Wonder products, anything with adhesive even if it is 1001 foam alphabet stickers (thanks Deane;), the inventor of "sticky notes"(Drew actually knows of the guy...yeah I'm married to a geek:), chocolate covered almonds from Trader Joe's (thanks Gina:), fresh produce and yummy salads (thanks Heather:), adorable Baby Legs(thanks Kate :), iTunes, green tea, Excedrin Migraine, and Netflix just to name a few.  I just wish the hospital wi-fi worked better during the daytime.  As for now if we want to watch anything without hundreds of pauses for streaming delays, we have found it best to watch things after 10pm.  This just means that I have spent way too many nights staying up way too late.

I can't believe that it's February already...time flies even when you are not having fun:).  When asked how long we have been here, our answer, "almost three moths with a ten day vacation home for the holidays".  I often get asked if I work here, my answer, "no, we just live here".  I have yet to drop a hair dryer in the toilet this admission... seriously, I have done this more times than I care to admit.  Drew joking says to me, "babe whatever you do, don't plug it in!".

Thanks as always for your thoughts and prayers, love and support. 
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natb said...

still praying for you! You are a rock to Lucy, just like your mom is a rock for you! I know God is going to use you guys in big ways through this experience (I'm sure he already is).

~Jana~ said...

You are amazing!! Your strength is second to none! Hope that you get some answers and make some progress this week.

Carrie said...

So nice to meet you and your wonderful family last week at duPont. So glad I found your blog so I can follow your story. You are an amazing family and I pray that God continues to give you the strength everyday to continue this fight.

(Patrick's Mom)

Carrie said...

So wonderful to meet you and your family last week at the Chronically Cool Families meeting. Your story is inspiring and I admire your strength. So glad that I found your blog and can follow along in your journey. Praying for your continued strength throughout this journey.

(Patrick's Mom)