It’s the little things…

I was on the phone around 10 pm talking with our main doc, monitoring Lucy’s heart rates and respirations,  trying to figure out a plan to stop the nonstop clusters of seizures that have been plaguing Lucy all day, all the while attempting to get blood flow back on her blue lumen (once again stuck), when I realized that our bed was made, clean sheets and all.  I looked over at Drew and whispered...

Life, it’s in the details…

All too often I find that I only have time to write about the big changes in our lives, the big appointments, hospitalizations, milestones, etc.… While important, I really desire to write about the everyday stuff of life too, you know the details that tell the story behind the story.  For example last Wednesday, when Lucy and I headed over to the DuPont ED at 10:30 pm, it was not because...

Last Year…

Romans 5:3-4 Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. Last Year… This year… I recently met someone who asked me if I was Lucy Marlett’s mom. “Why…yes, I am, I replied with pride.” To which the person responded, “wasn’t she dying last year?” “Umm…yes, I suppose you could say...

Home again…

It was a short yet productive stay at the hotel DuPont.  We managed to check quite a few things off of our medical “to do list”.  We were discharged early on Friday afternoon after deciding to hold off on giving Lucy blood.  Her counts are low for Lucy, and in the past we would have transfused her at this point because her heart rates would be indicating that it needed more fluid,...

We’re still here…

We’re still here trying to figure everything out.  I am going to make this short as I have been awake for almost two days, and I’m not even the manic one, but fear I will be soon if I don’t get some sleep.  Lucy’s dye study happened around noon today.  Conclusion, the line is most likely clotted off, no real surprise there.  Another round of TPA was ordered and IV team was successful...

Technical Difficulties…

Lucy and I came to the ED last night due to technical difficulties with her central line.  One of the lumens on her line has stopped working altogether.  Lucy’s level of care is too much to not have both lumens fully functioning, we had no other options but to bring her in so that we could get all of her meds into her.   The fear is that the line is not just clotted off but that...

Megan’s 9th!

Today we are celebrating the birthday of a truly beautiful soul! Happy Birthday Meggie O! We love you so much!...