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...