Friday, December 7, 2012

Getting by...


All of the e-cards that you have sent us...we hung a 6th string yesterday!
How are we doing?  We're getting by with a little, more like a lot, of help from our friends.  Long admissions, especially during the holidays, are tough.  I am in total denial that Christmas is just around the corner.  I really do wish that all of the decorations would be put away this year.  Selfish, I know, I love Christmas decorations, love, love them, just not this year.  I guess it's a good thing that we have been staring at the same four walls for weeks on end, there is nary a Christmas decoration in sight, except for the few things Lucy has made.  I don't have the energy to focus on all of the "stuff" that accompanies the holiday, but I do have in my heart the meaning of season, and am so grateful for the true meaning of Christmas.


We hung this on the door...just in case Santa walks by :)

Medically speaking, Lucy is dealing with full blown pancreatitis, her lipase is close to 4000!  For those of you who know these lab values, this is insanely high!  In other words, she is in a lot of pain:(.  We have shortened the time between her scheduled doses of dilaudid in addition to changing her fentanol patch every 48 hours.  This combination has kept us on top of her pain for the most part, she only required a few PRN doses of dilaudid in between scheduled doses yesterday.  The amount of pain meds that our girl requires is "impressive", everyone keeps telling us this!  We know her body metabolizes meds differently, but if you or I were on what Lucy is on we would be out cold until the year 2014!

So much love...

Lucy's bladder issues are huge, we are not sure we are going to be able to wait until her next surgery to fix them, they are that bad!  Lucy's bladder spasms are awful, we can not keep a catheter in place, unless we use a Foley.  The Foley balloon is irritating the urethra thus causing more spasms.  Her urine is full of sediment that keeps clogging the catheters, requiring us to change her Foley every couple of days.  In fact, while we were up at Jefferson this happened to Lucy.  After her procedure we noticed that her Foley bag was not as full as usual, and that her bladder was distended well over her belly button.  We tried flushing her catheter , but it was clogged, nothing was able to go in or come out.  We had no other choice but to replace her Foley.  Lucy has a large hypospadis, tear of her urethra, that makes cathing extremely painful and difficult, this will never heal as long as she has an indwelling catheter going into her urethra.   Our urologist came to see us yesterday and she is recommending that we move forward with the suprapubic catheter placement sooner rather than later, as in next week.

Friends young and furry...

We are taking things one day at time, I really can't think much further into the future than that.  We want to thank all for your thoughts and prayers, love and support.  We love hearing from you and visiting with you.  Sorry we missed you yesterday Kristina and Emily, she loved her Elmo balloon and ladybug :)
I love my daddy!

4 comments:

Khanh said...

My prayers go out to Lucy and your family through this hard time. She is a tough girl and will battle through this. The last post was very cute and heartwarming especially the letter to santa. Have a great Holidays and I hope that Lucy comes home soon. :)

Khanh said...

My prayers go out to Lucy and your family through this hard time. She is a tough girl and will battle through this. The last post was very cute and heartwarming especially the letter to santa. Have a great Holidays and I hope that Lucy comes home soon. :)

Kristen said...

I am just catching up with all that you have been going through. I am so sorry to hear that Lucy has been so sick. You will be in my thoughts and prayers for sure. Stay strong Marletts! <3

Kristen

Jen said...

Continuing to pray for Lucy & all of you!
~ Jen Semple