Home again…

We arrived home this evening.  As always, we are trying to get settled back in to our routine.  Lucy is on an every six hour antibiotic schedule which means Drew and I will be taking turns infusing meds throughout the night.  Lucy has over two dozen meds that we give a day, each taking at least fifteen minutes to infuse.   We run a pretty tight med schedule around here to...

Today…

I woke up early, showered while Lucy was sleeping, and then heard the resident come in and wake up our girl who has had very little sleep in days...grrrr.  This is one part of hospitalizations that I despise. At around 10am Dr. R came waltzing in, he knows better than to wake Lucy up.  We were so happy to see him we could  have hugged him, he smiled and said I bet you are.  I asked...

Our day in a nut shell…

We spent our day waiting for bacteria to grow, or rather not grow.  Line cultures are still negative, but urine cultures are positive for bacteria, one she has grown before, but not the one she grew two weeks ago.  We think that this bacteria may have translocated from her failing intestines into her bladder.  We also believe that because we are doing ethanol lock therapy on Lucy’s...

Back in again…

Cultures are cooking, labs were drawn, urine collected, and vitals taken.  After a long day spent in the ED it was decided that they wanted to admit Lucy for observation…ugh.  She continues to run a fever, but she is not acting “sick”.  The attending that is on this weekend is concerned about Lucy, I can appreciate that, but I’m not quite sure what keeping us here over a weekend is...

On the fence…

That is Lucy’s current stance, all week her body temperature has been on the rise.  It is hovering at or above our cut off for what we consider a fever.  Last night it went higher than it has all week which prompted a call to the on call doctor.  Our options at 11pm were few, she needed to have repeat labs and blood cultures done to rule out infection.  Sensing my frustration,...

Quick update…

We arrived home tonight at around 6:30pm, exhausted, emotionally drained, nervous, but relieved to be home.  We are working on the dosing for Lucy’s anti-seizure meds.  She has not had any more seizures since starting her on the Keppra and pheonobarb regimen,  for that we are very grateful.  She is, however, one miserable baby.  Keppra has a nasty side effect of causing increased...

Our day…

Our day started off ok.  Lucy woke up at around 8 am, played with some toys, chatted to people she felt like chatting with, ignored those she felt like ignoring, watched Tinkerbelle for the billionth time, and then started seizing again.  The team was rounding when she started seizing so they were able to witness first hand the type and  intensity of Lucy’s seizures.  In a way...

Sleeping over…

We are in a room on our regular floor admitted for observation of seizures.  Since giving Lucy her phenobarbital dose for the night we have not seen any more seizure episodes.  Prior to that we had several episodes that were observed by the admitting team.   We are very concerned that she is having a paradoxical reaction to the methadone…ugh.  She is extremely agitated and...

Too many things…

Times have been tough for our little one, I believe that is the easiest way to sum things up.  This afternoon Lucy was taken to the hospital via ambulance for cluster seizures lasting longer than ten minutes.  These continued for the duration of our ride over here.   For those of you who have ever had a child or seen a child seize, a second feels like an hour, a minute a year,...

Today…

As I sit here, blood is infusing ever so slowly into Lucy so as not to fluid overload her.  She is finally sleeping, something that has been scarce for her this week.  We are praying that this is the boost her body so desperately needs, but I have been told that even though this will help this is not going to “fix” her.  I know this in my mind but in my heart is another matter. Her...

Worried…

You’ve heard the saying “worry does not empty tomorrow of all its troubles, but empties today of all it’s strength”.  I’m not really sure who is famous for stating this, but I wonder if this person had a child with a chronic progressive degenerative disease that has them wondering at all hours of the day and night what on earth is going on with their child.  I had strength beyond my comprehension...

Where I Last Left Off…

I apologize for my lack of updates, time is just not on my side these days.  We appreciate so much the love and support that we receive from all of you who know and love us either from the words here on this blog or in real life! When I last wrote I shared with you that there is a fungus among us.  After several conversations with our main doc it was decided that we needed to investigate...