Wednesday, December 8, 2010

Some things…

I know, I am behind in updating.   A friend asked me recently if no news was good news?  I think, that recently, no news means that I have been too tired to blog and I don’t know how to put into   words all of the things that have been going on in our world.  I want so badly to write about nothing…about mundane everyday things… about how the stress of the holidays is overwhelming right now.  In reality, the stress of the holidays is a welcome stress, it is something that most everyone is feeling at the moment, and sharing feelings that most people are experiencing makes us feel “normal”.  It is something that we can talk to others about, because we know that what we are living with, feeling, and experiencing is so very different and difficult to talk about.

We often get asked how we are doing, Drew and I, and how the other kids are handling things.  It is impossible give a simple one word answer to this question. There are moments where I want to shout to the world “don’t you know our daughter is very sick and ‘blank’ doesn’t matter” and other times I just want to go on living like none of “this” is even  happening. Some moments are better than others; but, overall we are all leaning on one another, gaining strength from one another.  I love how when one of us is down there always seems to be one of us who is there to pick the other one up, I guess you can say that this  is one of the many blessings of having a large family, someone is always there for you when you need them and vice versa. 

Again we were at DuPont yesterday, this time to get yet another KUB (kidneys, ureters, and bladder)scan  of Lucy’s belly.  Dr.R wanted this scan to examine Lucy’s bowels, tube placement, and to see how constipated she is.   Lucy has been experiencing increased belly pain in the last few days that has been consistent; in short, she is miserable.  Her bile output is yucky, and she is vomiting when we try to push her meds into her j-tube.  When I spoke with him later in the day in regards to Lucy’s scan he said that she has stool that is impacted on her left side but is not totally impacted, however, it needs to be remedied.  By this he was telling me that we need to go back to using enemas and suppositories to get things moving and keep her from getting totally impacted.  Ugh…this is a regimen that neither she nor I like to do.

In addition to all of the belly pain, Lucy’s autonomic dysfunction has progressed, Dr. R is describing Lucy as having  an “autonomic storm”.  Her pulse ox, which measures the amount of oxygen in her blood, is all over the place but lower than we have ever seen it.  Her heart rate continues to remain high, and her coloring well…she looks pretty pale.  She is having more periods where she looks dusky and her skin is mottled.  Discussions about transfusion and just how exactly we are going to do this for Lucy were had.  Vein access and hypoglycemia are some of the hurdles to getting Lucy transfused. 

We are scheduled to see Dr. R tomorrow,  my list of things that we need to discuss with him is growing every day.

Thank you as always for your thoughts and prayers.        

5 comments:

Susan said...

Oh, Nicole... I'm not even sure what to write. I just wanted to post something, so that you know we are here, and that we are praying - lifting little Lucy up to the watch-care of the ONE who has all the answers and knows her future and loves her more than you can imagine.

I think I had mentioned to you that I may be able to bring a meal to you at MOPS this morning... well, I doubt you'll be there, and, as it turns out, I won't be there either, thanks to a lovely tummy bug. That I DEFINITELY don't want to share with you!!!

May our Lord and Savior make Himself very real to you today.
In Him,
Susan

twotrainnuts said...

Nicole: I also wanted to let you know that your entire family is in our prayers every day, regardless of whether or not you post...and regardless of whether or not I leave a comment.

Lori Bouchelle
(Drew's co-worker)

eckman fam said...

hey! it was great to see you yesterday. (on a side note...you are beautiful in red!!!!) anyway...our whole neighborhood and family is praying for you guys. nobody should have to go through what you are going through. nobody should have to rattle off all the medical terminology that you can...it just plain stinks! please email me anytime you need anything!!! even if you just need someone to meet you at starbucks to get away for a bit!!! eckmanians@gmail.com

megan said...

Hi! You know we check on you daily and don't feel obligated to anything but we love seeing you and Lucy's bright little face! Emma would love to get together this Tuesday, if you and Lucy are up to it! We can talk about anything or everything!! Let us know how you are doing and if you want to meet us! WE pray for you guys every night.
Love and hugs!
Megan,Andrew, Molly & Emma

Jessica said...

I hate that your family is going through this too. I hope that the dr has some good plans. My one piece of advice is this- don't wait, rewire the broviac as a double lumen. Save you and Lucy tens of hours and hundreds of IV attempts. It is very likely that she will frequently start to need blood, and probably other infusions like IVIG or antibiotics that aren't compatible with TPN, and like Eithene she can't be off of it.... so my advice is get them to change the line over to a double now, and save all of you tears and stress. We should have done it right away with Eithene, and if I could go back I'd get it done so much sooner...

Hugs.