8:00 pm update…

Lucy’s femoral line repair did not actually begin until 5:40 pm.  They were able to repair the existing line sparing Lucy the need to look for access in her right leg.  They were able to place a longer catheter in the same hole, hopefully this will hold us until at least Monday.  Our biggest hurdle in having this procedure done was finding a peripheral IV access site.  Thank...

Not again…

It is 2:50 pm and we are waiting for the PICU to come up and get Lucy so that we can fix or replace her existing femoral line.  Like I wrote yesterday, one of the lumens on Lucy’s central line is not working, they suspect that it is cracked.  We can’t leave it like this because it is a huge source of infection.  Lucy’s temperatures are starting to creep up and that has everyone worried. ...

Trick or Treat…

Today the hospital celebrated Halloween by having the children trick or treat around the different units.  Child Life did a wonderful job coordinating this event and went out of their way to make it extra special for our little one and her brother and sisters.  Megan and Jack were in school during the festivities;  however, Sophie came with my mom to partake in some of the fun. ...

A better day…

Today we  saw more of the Lucy we know and love.  She is talking and playing more than we have seen in over a week.  We believe that because we are able to feed her through a central line she is starting to feel a little better.  As has always been the case with Lucy, if we can get her the proper amount of nutrition she will show you amazing things.  We are going to increase...

It’s Wednesday, not Tuesday…

I woke up this morning and it was dark and raining.  Dr R came in early, but not as early as I thought.  I thought it was 5:30 am as that was the time I went back to sleep after Lucy’s blood draw/vitals check, but it was already 7:00.  It didn’t feel like an hour and a half  had passed since I went back to sleep, but exhaustion can really mess with your biological clock. ...

Thank God for Another Day…

Thank you all so very much for thinking of and praying for our family and for Lucy, many prayers were answered.  There was A LOT of drama around here last night, and this morning we woke feeling the after effects of the entire situation.  The adrenaline is wearing off and I am feeling it.  I was instructed by Lucy’s doctor to be ready for the long haul.  He is ordering me to take...

2:55 am update…

Lucy’s line was successfully placed and with no complications.  They tried to place it first on her right leg but that was not working so they moved it over to her left leg, near her groin area.  Drew and I have tremendous peace knowing that we no longer need to worry about her not having a point of access.  Lucy came out of anesthesia better than anyone expected and she is sleeping...

How we got to where we are…

It has been a rough week , but the past few days have been terrifying as we have watched our little one decline faster than we ever thought possible.   Mito is a baffling disease, there is no guide book on how to treat these kiddos as each and every one of them has different issues.  There are similarities, but no two mito patients are the same.  That being said, Lucy likes being...

Update 10:40

Anesthesia was called to Lucy’s beside to place a peripheral line in Lucy, it had to be done in order to do anything and to keep her alive!  They were able to get a line placed in her left lower leg.  We are scheduled at midnight to go down to the PICU to have a central line placed.  Please, please continue praying for our little one.  Lucy is very very sick, her GI system has...

Please pray for Lucy 10PM 10/25

Lucy lost her Peripheral IV access again about a 20 minutes ago.  She needs to get another line placed ASAP to maintain her glucose level.  She is in trouble!  She needs a line, it is a matter of life or death!...

Sunday…

Weekends in the hospital are not fun! However, the best part of our weekend was hearing from and visiting with friends and family!  I can not express in words how grateful we are for the blessing in our life that we are honored to call our friends and family.  Our family has been blessed over and over and we can not thank God enough for all that he has given to our lives.  So many...

Intolerance…

We learned the HARD way that Ativan is NOT the drug for Lucy.  It is a sedative, and for most people it makes them calm and sleepy, but not for our little one.  Lucy’s brain chemistry is different, her brain does not react normally to sedative type medications.  For Lucy Ativan had the opposite effect, it made her manic.  We witnessed a similar situation when Lucy was given...

Another quick update…

I am sorry to report that we are continuing day 2 of another bad day.  Lucy is MISERABLE and she could use some thoughts and prayers sent her way. She is beyond tired, and we have most defiantly upset the delicate balance of energy in her body.  We have increased her Ativan dosing times 4 as she is manic and unable to shut down her brain.  Finally after over 18 hours of...

A Bad Day

Our day turned sour pretty darn fast!  It is 12:58am and I think that we finally have some control over her pain issues.  I will be brief as I am too tired to write too much.  Lucy had her GJ tube placed under fluoroscopy in IR at around 3:00pm.  At 3:45 we were back up to her room, she was MISERABLE, and she made sure EVERYBODY knew it!  I think that we have “stirred the...

A quick update…

First off NO poop yet, it will happen, it has to!  Dr R and I agreed that at this point we are so vested in this that we just need to stay the course for a while longer.  He even went so far as to talk about who was on for the weekend, so I am thinking that we are really in this for the long haul.  Lucy and I took a trip down to interventional radiology(IR) this morning to do a gastric...

Still waiting…

How long do you think it will take to “clean out” Lucy’s bowels?  That’s an excellent question.  According to some very knowledgeable mothers I chat with in regards to mito and motility disorders, the consensus seems to be 3 to 5 days!  Lucy has been running a solution of Golytely for over 24 hours via her g-tube, this is what is used to cleanse people  prior to surgery or having...

In Patient

No sooner did I go and blog about Lucy’s latest issues did she go and take it to the next level.  Lucy is severely constipated, so much so she is experiencing episodes of pain.  She can tell us now when she has pain, she keeps telling us “berry hurt”.  This helps us to decipher even more where her pain is coming from, although she generally always tells us that her “berry hurt”. ...

It’s been awhile…

…I know!!  I have been trying to carve out the time to put down in writing all that has been going on around here, I just don’t seem to have the time or the energy to put into words all that we are feeling or experiencing.  We have a lot going on in our everyday life in addition to Lucy’s medical life.  I am so far behind in updating you on the everyday stuff, that I am not sure...

2010 Energy for Life Walkathon…

We all woke bright and early Saturday morning to show our support for Lucy and all who are affected by mitochondrial disease! We are so overwhelmed…in a good way…by all of the love, support, care, concern, thoughts, and prayers that are given to our family!  It means the world to us to know that so many care! It is for the Love of Lucy, and the many others affected by mitochondrial disease,...