Not your typical Thursday…

We are currently sitting in day medicine watching blood drip ever so slowly into our baby girl.  Dr. R  came over to discuss the details of the day, and reminded me again that transfusion is really our only option for alleviating Lucy’s cardiac symptoms.  On Christmas Eve we received a call from Lucy’s cardiologist.  The results from Lucy’s Holtor monitor revealed what we suspected. ...

The Holiday Rush…

Christmas is coming, and with four little ones in our house you can imagine the excitement brewing around here!  Letters to Santa have been written and rewritten, finalized, and sent.  We have a visitor from the North Pole who has taken to hiding in various places around our house.  Jack thinks he is a spy of sorts, Sophie asked if he was a tattle tale, nobody wants Lucy to touch him...

More appointments…

Today was filled with even more appointments, this time at DuPont.  Last Thursday when we met with Dr. R it was determined that we needed to see Lucy’s cardiologist a.s.a.p.  We received a call yesterday saying that they could see Lucy today at 1:30.  I know, I know, we are gluten for punishment.  Two days in a row where our girly had to forgo her typical four hour nap, it has...

Appointments…

Last week Thursday we had through and emotional appointment with Dr. R….I am working on a post about that appointment that I will post when I am finished.  In the mean time, we are scheduled to see the top motility specialist at CHOP today.  We were originally scheduled to see this specialist on October 26th…well, we know what happened then.  We are hoping that they will have some...

Some things…

I know, I am behind in updating.   A friend asked me recently if no news was good news?  I think, that recently, no news means that I have been too tired to blog and I don’t know how to put into   words all of the things that have been going on in our world.  I want so badly to write about nothing…about mundane everyday things… about how the stress of the holidays is...

So much change, so little time…

To write that is, life has been busy in the Marlett house.  I want to apologize to anyone who has called, e-mailed, texted, or tried to communicate with us in, let’s just say,  the last month or so, it has been difficult to find the time to talk , type, or get together.  Please, please, know that we love hearing from you and  will get back to you…soon, I hope. There are so many...

Were going home…soon

After 48 hours, nothing bacterial is growing in Lucy’s blood cultures, which means she does not have a blood infection, which in turn means that we can go home!  We are treating Lucy for bacterial overgrowth in her intestines…again.  It appears that we are going to have to do 15 days on and 15 days off with the Flagyl in an effort to keep things under control.   We are leaving...

Thanksgiving update…

The nurses on the floor are teasing Lucy saying that she just wants to spend all of the fall holidays with them, first Halloween and now Thanksgiving.  Just when I thought weekends were desolate here, you should see it on a major holiday, it is down right deserted.  We have yet to see any doctors make rounds today. We are making the best of a less than ideal situation.  Lucy and...

Fevers and so many other things…

Oh where to start?  Lucy has been “off” for a while; honestly, I’m not really sure she has been “back on” for months.  Since being discharged just shy of three weeks ago, things have really been difficult for her, and in turn, us.  She has had on again off again fevers but nothing over 100.4, well…except for the time she got her flu vaccine and shot up to 101.2,  I will not go...

Back at DuPont…again

We are currently sitting in the ER at DuPont waiting for a bed on 3F.  Lucy is being admitted because she has been running fevers all day… Will update more when I have time.  Your thoughts and prayers are very much needed....

Just an update…

Really not much has changed since I last posted.  Lucy continues to have all of the same symptoms, her temps have managed to stay below 10o which indicates to us that these temps are related to her autonomic dysfunction, her body’s inability to regulate processes that the body does automatically.  We aren’t surprised to see her responding this way, her body is really trying hard to adjust...

Not really sure…

I won’t lie, things have been stressful.  We are worried about our little one.  We don’t know what it is that is exactly causing her issues, the NOT KNOWING is so hard!  On the outside, Lucy is beautiful, dare I say “perfect”.  Her personality shines on most days, and so too does her pain.  We have been on sort of a wild goose chase trying to hunt down the cause for...

Update…

Chest x-ray came back normal, thank goodness it’s not another aspiration pneumonia. CBC mostly normal, nothing too out of the ordinary. Electrolytes good for the most part, a few things that are low but nothing that would be causing Lucy’s symptoms.  Albumin was a little low,  we will most likely need to tweak her TPN a little. Blood cultures are done, and will take approximately two...

Back in the ER…

Not really sure what is going on, but Lucy has been “off”.  She has had an on again off again fever, she has a higher than normal heart rate (tachycardia) which is giving her pulse ox and heart rate monitor a good workout, and she has had several episodes of looking blue and mottled.  Something is just not right… We will update when we know more....

This is really hard…

We have been living day by day, sometimes hour by hour recently, which is NOT a typical way of living for me.  I am a planner, a quintessential type A personality, but with perspective.  I like to think that having perspective helps to tone down some of the annoying characteristics of a typical type A person.  We were in-patient for seventeen long, very stressful, extremely emotional...

Home Sweet Home…

After a loooooooong day, we arrived home around dinner time.  Drew and I chose to surprise the kids with our home coming, I just love a good surprise! The enormity of our situation hit me when we were loading all of our stuff and our little girl with all her tubes and accessories into our van in the pouring rain.  Life is different now, we will adjust, but it is going to take some time....

It’s in…

Lucy’s central line is in and after several hours of searching for the final radiologists report, we are now able to use it!  They left Lucy’s femoral line in so that they could use it during her procedure.  Thank God they did because we would not have been able to feed Lucy her TPN this afternoon since we did not get approval to use her new line until 5:30 pm.  Although, something...

Dear God…

It’s me Lucy…Please watch over me as I get my central line placed today....

Silly Goose…

We love you girly! ...

What are we waiting for…

We are waiting for an add on time slot for the OR for today. Last night Dr R called from his car on the way home( I think because he was too afraid to tell me in person) to say that he could not get us an OR slot until Wednesday at 10:30 am.  He came in this morning and said that he knows the CRNP in the OR that does the scheduling and that he was going to go and see what if anything she could...

We have a plan…

Dr R came in this morning and made a comment about our very eventful weekend.  He then said that it was time, time to schedule her for a central line placement.  We are going to be placing a Broviac double lumen central line because it is what Lucy needs.  We are waiting to hear from the OR to see if we can get an add on OR time slot today.  I am not holding my breath that this...

Happy Halloween…

I feel like I have watched the seasons change looking out of our hospital room window.  The leaves are past peak now and some of the trees are bare. It has most defiantly gotten cooler as we see people wearing warmer clothing.  However, in Lucy’s room it feels like the tropics, everyone that comes in comments on the change in climate the moment they enter our room.  They have turned...

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...