Merry Christmas to all…

and to all a good night!...

A quick update…

So far cultures are still negative, we would be very surprised if that changes. Lucy’s urine culture did come back with bacteria that she has grown before. We believe that her bladder is most likely colonized with the bacteria, we are not really surprised since she has a neurogenic bladder and is cathed several times a day, everyday. We believe that Lucy experienced a very rare side effect,...

No news…

I have not heard from the hospital or our main doc, which means that cultures have not grow anything as of yet, that’s good.  The cardiologist on call last night confirmed, based on the EKG they did in the ED ,that Lucy is experiencing sinus tachycardia.  We’re not at all surprised with this finding, but what we are wondering is what is causing it.  The fear is that it could become...

Twas a week before Christmas…

And all through our house sounds of Lucy’s heart rate monitor are alarming us all!  We are currently sitting in the ED getting labs and cultures drawn.  Lucy’s heart rates are high >170bpm, she is sitting right at the cutoff for what we consider a fever, and she looks like a little tomato.  On the plus side, she is not really acting “sick”…yet.  We spoke with our main doc,...

The Readers Digest version…

Sad but true, I don’t have enough time during the day to sit down and write a blog post from start to finish.  I very often begin posts only to find that days later they remain incomplete.  By the time I sit down to finish writing, I am often too tired to complete a thought much less write one down.  My lack of blogging is certainly not because of a lack of things to blog about…quite...

Baby has a brand new set of wheels…

Lucy’s new wheelchair is here!  She has outgrown her old chair both in size and medical need.  Her new chair is bigger, heavier, more comfortable for her (not quite as comfortable for me to push), can support the weight of all of her medical equipment, has an IV pole, is pink, and has her name embroidered in pink letters on her seat to match her chair.  This is just a little something...

Happy Thanksgiving…

We have so much to be thankful for… From our house to yours, Happy Thanksgiving!...

Matters of the heart…

A few weeks ago we had an appointment with a cardiologist who specializes in pediatric cardiac arrhythmias, also know as a cardiac electrophysiologist for those of you medical junkies out there.  Dr. R likes to harass quiz me on my medical knowledge anytime he can, I have to remind him that I specialize in Lucy,  not medicine. For over a year we have observed changes in Lucy’s cardiac...

Letters to Santa…

Dear Santa,      For Christmas, we would love to be able to give a fraction of what we have been given… Here’s a wonderful way of showing your support for an organization that is near and dear to our hearts!  Thanks to Macy’s for supporting the Make-A-Wish foundation!  ...

What comes around, goes around…

I am referring to germs,  they found us and apparently are tough enough to stand up to the copious amounts of Lysol used in our house.  Jack has been sick for the better part of a week, he has been struck with what we thought was strep throat and some sort of upper respiratory virus (para virus) that is lingering and according to our pediatrician has the reputation of causing secondary pneumonia. ...

Trick or Treat…

A snow storm, an autonomic storm, a pumpkin shortage, a migraine headache, fever, vomiting, and strep throat tried to trick us into not celebrating Halloween his year, but we managed to find the treat in celebrating. No, Lucy is not the sick one (yet), it’s Jack.  Happy Halloween! ...

An “Off” Day

We are bound and determined to celebrate Halloween-at- home this year, and we were going to kick off our home Halloween weekend with a hay ride out to the pumpkin patch, but… it’s snowing, it feels more like we should be getting our Christmas tree.  I stepped foot into a Target for the first time in months on Thursday looking for wings for a monarch butterfly costume that Sophie very firmly stated...

Beach Memories…

Lots of memories were made during our beach vacation… it’s hard to believe that it was just a little over a week ago that we were basking in the sun, with the wind at our backs, and sand in between our toes.  We thought long and hard about how a vacation like this would work for our family.  As you can imagine bringing four children anywhere is challenging, but having one very “special”...

The view from here…

Enjoy! ...

Sophie sells sea shells down at the sea shore…

That is if we would let her.  Our kiddos have been fund raising machines this year, coming up with all sorts of ways to raise money: pizza night, lemonade stands, fruit and vegetable stands, carnivals, bracelet sales, comedy shows… and in their own way raising awareness for mitochondrial disease all in an effort to “save Lucy’s life”.  For our kids, this is something that they CAN do to...

Home Sweet Home…

We finally made it home tonight a little before 7:00PM…can you say loooooong day!  We were discharged this morning at 11:00 AM, just in time to head downstairs for an outpatient therapy appointment with Lucy’s PT.  Afterwards we went straight to the outpatient pharmacy to attempt to pick up a prescription that I normally order from another pharmacy, but did not because we have been in...

Still here…

It has been a long day, week, admission… We went down to the OR around 1:3o.  They were ready for our girl.  Dr. K explained his plan and told us that it was going to take him as much time as it would take him…words that were both comforting as well as worrisome. (Dr. K made Lucy a tiny gauze heart to cover up her sutures:) A little over an hour later he came out and told us that things...

Our Weekend…

Our weekend actually went by faster than I thought it would.  Medically, Lucy did just what Dr. R ordered…to behave!  Her cultures have all been negative, which means that our fear of reinfection is no longer, and her new line can be placed.  We are scheduled for surgery tomorrow afternoon with Dr. K again.  Afterwards we are hoping to pack up and go home!  I spoke with our...

TGIF…

Really, I will be saying TGIM on Monday when Lucy can get her new line put in and we can go home.  Today was another day of waiting for bacteria to grow, or rather not grow…so far no growth.  Medically speaking today was an uneventful day, Lucy’s red mans was better than yesterday, but not gone.  We are watching her carefully for any increased signs of reaction.  Her blood pressures...

Thursday…

I am at the point in this admission where I just want to go home…I have found, for me, that there is that point in every admission where you just want to go home, today I hit that point.  I remember Dr. R telling me last year that you need to take a break from here in order to make it through a longer than a week admission, he has no scientific proof of his theory, just a lot of personal experience. ...

All of our ducks fell out of our row…

We  went down to the OR around 1:30 this afternoon.  The surgeon who pulled Lucy’s infected line and placed Lucy’s temporary femoral line was the infamous Dr. K, who has a reputation for being an amazing surgeon with a great bedside manor.  He also happened to be the one to tell me that there is no way he is going to place a more permanent central line in Lucy on Friday, but he would...

Rosie Cheeks…

On our agenda today was a bath and blood…not a blood  bath, just to be clear.  Lucy was originally scheduled to be transfused in day med today, but since we are currently in-patient we transfused her from the comforts of her hospital crib.  Her skin now has a pinkish glow and her cheeks are rosie red…she looks so warm and beautiful, and she smells good too.  This morning we...

Today…

Today started like many days in the hospital…early!  Lucy has to have labs, labs, and more labs drawn daily for cultures, a CBC, antibiotic levels, and to check her chemistries.  All of this happens somewhere between 3:30 am and 5:50 am…which is early!  I learned from morning rounds that Lucy’s cultures are still positive for the same bacteria, the lumen that was negative yesterday...

So far still positive…

By positive, I mean Lucy’s cultures.  We are continuing with the current antibiotics because in theory they should be able to kill the bacteria identified in her line.  Of course with Lucy, everyone knows that she likes to take the road less traveled.  Despite this quality about our daughter, I too am going to remain positive that we are on the right track.  Lucy continues to...

Admission…

I may not have made it very clear in my last post, positive cultures mean that we absolutely positively have to be admitted…ugh!  I will be the first to admit that when I received word that Lucy’s cultures came back positive I acted like a big baby about having to come in on a Friday night.  I know, not very, mature, but I was not prepared mentally for an admission last night…I was ready...

A Rollercoaster…

Recently we had an opportunity to take all of our kiddos to Hershey Park, a local amusement park, famous for the smell of chocolate in the air and roller coasters, lots of them.  Drew, Jack, and occasionally Megan and Sophie took advantage of as many of the rides as possible, Lucy and I rode the handicap accessible train over and over with the occasional carousel ride thrown in for variety. ...