Live and Learn (a long over due update)

We are still here, I just haven’t had much time to blog recently.  To be honest, I have had a difficult time finding the right words to describe what we have been feeling.  We are working at grasping what getting Lucy’s diagnosis means.  Since I last posted we saw Lucy’s neurologist.  She discussed with us what she thought of Dr Shoffner’s report, she agreed with his recommendation...

Antibiotics are a Good Thing

We are all singing the praises of antibiotics in our house this weekend!  Lucy is feeling better than we have seen her in a while.  Her mood is better which makes all of us feel better even me who has been sick all weekend.  The moment we left the hospital on Friday afternoon I told Drew that I was wiped, little did I know how wiped I was.  I woke up Saturday morning with a fever,...

Home Sweet Home

I am happy to be typing to you from the comforts of my own bed!  We are so happy to be home!   All of our children are nestled sung in there beds(well except for Sophie who has popped out of bed at least a half dozen times tonight) and I too am going to do the same just as soon as I tuck Sophie in bed again.   Good night, sleep tight! ...

We’re still here but…

Here, meaning in the hospital but hopefully not for much longer.  We are still here because Lucy’s first culture grew positive for staph aureus, aka MRSA , in addition to the strep A bacteria.  We are waiting to get the results back from her second culture to see if that too grows the same staph bacteria.  Hopefully, tomorrow we will find out those results.  We had to switch...

Aaahhh….choooo….

       So funny!...

What day of the week is it again?

You can really loose track of time when everything you need to do revolves around someone else's schedule.  This afternoon Lucy’s nap was not as long as I hoped it would be, who was I kidding, nobody sleeps when they are in the hospital.  We met with the infectious disease team this afternoon.  They took a look at her site and even commented on how “oozy” it looked.  They are concerned...

Just when we thought we were going home…

After another restless night of sleep we woke this morning looking forward to going home and sleeping in our own beds.  Plans were being made for discharge when our pediatrician came in and said “there’s been a change of plans”.  Lucy’s culture of the inside of her stoma grew positive for strep bacteria.  We are now going to start her on a course of IV antibiotics .  Our pediatrician...

Save the Tube!

A lot has transpired throughout the course of the day which has made it difficult for me to post any updates. Surgery came back again this morning and took a look at her tube site. They verified that it must be in her stomach because when they opened her port it leaked stomach bile. What we were unsure about was whether or not the tube was pulled partially out of the stomach. In order to determine...

G Tube Trouble and/or Something Else?

Well it’s 2AM and I am writing to you from room 3 at the DuPont ER. We have been here most of the night trying to figure out what’s going on with Lucy. She has been “off” recently, very irritable and sleeping excessively 18 to 20 hours a day! She is experiencing pain around her tube site, and oh my if you saw it you would know why. It does not look good, some tissue has oozed out from the stoma site...

Where do we go from here?

First off, I want to thank all of you who have reached out to us this past year, particularly these past few days. Your support is so valuable to us, I know that we would definitely be more insane without the love and support we receive from all of you! Getting this diagnosis doesn’t really change what we are doing as far as Lucy’s care goes. There is currently no cure for mito, there is something...