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.