Taking time…

Yesterday we took some time to stop and smell the roses. Our family that likes to go, go, go has not really gone, gone, gone, anywhere as a family of six in a long, long, time.  Cold and flu season, combined with freezing cold temps, and the fact that we need to bring half of the hospital with us whenever we go anywhere with Lucy has seriously cramped our style.  Yesterdays warm...

Home Sweet Home…

I am happy to be typing to you from the comforts of my own bed.  We are home and are beginning to comprehend the enormity of the last week and a half.  Lucy now has a double lumen broviac line which has already made life so much easier for us.  There was some miscommunication or misunderstanding, not sure which, with the anesthesiologist that caused some blood sugar issues.  The...

Never lose hope…

When we woke up, and I use the term woke up very loosely as we had another horrible night, our nurse told me that Lucy was eighth on the add on list for surgery today.  Eighth…I was not going to hold my breath that this was going to get done today.  Dr. R came in and promised me that Dr. D would get her done today sometime between 2:30 and 3:00.  As he and I were talking our nurse came...

Prayers please…

Prayers are needed for our fellow mito warrior, Maggie , she is in the end stages of this disease, suffering immensely.   Please pray that she finds peace and comfort, and that her family continues to have the faith and courage to handle all that has and is to come....

We’re hiding out…

We are trying to make the best of our situation,  in all honesty I wish that I could crawl up under the covers and hide with Lucy.  Sleep has been an issue this entire admit,  not enough of it that is.  A few months ago we switched Lucy’s reflux med, we don’t think this med is holding her anymore.  Lucy suffers with  gastroesophageal reflux disease (GERD), severe reflux...

Fever and Positive Cultures…

It is a mindset, hospital stays, you have to be able to relinquish some control over your child’s care, and be at the mercy of everyone else’s timeline.  I, personally, have to stop trying to plan in my head when things are going to happen, when if I learn to do this, I will be less disappointed when things don’t go “according to plan”.  This morning Lucy woke early with telll tail signs...

It’s in…

Lucy’s new temporary line is in her neck, her right subclavian to be exact.  The entire procedure went smoothly, anesthesia was able to administer some Propofol to her bedside before taking her back which made the transition from mommy to the operating room very smooth.  I love that the staff here try to make things smooth and easy.  While Lucy was in the OR Drew and I went to the...

Where is Lucy?…

Lucy is currently in the OR  getting her old line pulled and a new temporary femoral, or sort of femoral, line placed. The surgeon placing the line is the surgeon who Dr. R has been consulting with about possible options for bowel surgery for our little one.  It was a pleasure to meet him finally today.  He told us that he is going to place Lucy’s temporary double lumen line in her...

Change of Plans…

Dr. R came in this morning to tell me that Lucy’s blood culture from yesterday was positive for gram positive bacteria.  This changes our plans for pulling and placing her line today.  We need to have two or more negative cultures in a row to place a new line.  The new plan is still to go to the OR sometime today and have her old line pulled. We will have a temporary femoral line placed...

What can we say, our girl is unique…

We found out the specific bacteria Lucy has growing in her line, it’s a weird one, one she grew out a few weeks ago but we seriously thought it was a contaminant as our doc and none of the other docs on his team have ever seen it before.  Dr. R came in late this morning and asked Lucy for all of her lotions and potions that she loves to smell, he was kind of on a wild goose chase of sorts, reading...

Not much new…

Really, there’s not that much to report on today.  Lucy’s repair/splint on her line is holding and tomorrow we will have to decide what we are going to do with the line.  The susceptibilities are not back yet, which means we still don’t know what type of gram positive bug we are dealing with.  Hopefully we will know this tomorrow.  Lucy’s belly is hurting her more tonight,...

Just passing some time…

It looks like we are pulling our hair out…we’re not…yet. In order to pass some time this evening I allowed/caved/gave in/became desperate for something to let Lucy do in her bed so I gave her a pink bucket and some tiny bottles of lotion, shampoo, and conditioner to squeeze into the bucket and smear around. She was having great time smearing, which turned into a sudden urge to wash her own...

No she didn’t…

Yes, she did…Lucy tested positive for c-diff.   I admit I was a little surprised and disappointed to learn this, but considering the amount of antibiotics she has been on in just the last month and her recent hospitalizations I really shouldn’t be.  As a result of this we are in isolation, we can’t leave our room but we can have visitors (hint hint), they will retest her again on...

Gram Positives So Early in the Morning…

A nap is most definitely in store for Lucy and me today!  We had a late night and several interruptions in our sleep that made morning come way too soon.  I learned early this morning that Lucy’s cultures are growing gram positive bugs.  This is most likely the source of her fevers.  Somebody ordered stool cultures to rule out c-diff so we are still on isolation until we get the...

A three ring circus…literally

(Sick eyes) What a day we had…Lucy continues to be febrile, with a persistent average temp of about 38 degrees Celsius, the cut off for our fever threshold.  We arrived at the ED this morning and started with the usual protocol for fevers in kids with a central line; two different IV antibiotics, one to cover gram negative bacteria and another to cover gram positive bacteria.  Dr. R came...

Fevers…

Here we go again… Lucy started getting a fever last night when we put her to bed.  We were teetering on the edge of do we go in or should we wait last night.  Early this morning her fever was on the rise.  We contacted our main doc and we are on our way to DuPont ED.  I will update when we know more. As for the blue food, it never showed up in her bile bag.  Not really sure...

Blue Food…

What do you get when you mix blue food with white bile?  I don’t know, but I’ll tell you in the morning.  Lucy has gone and done it again…that is she is taking the road less traveled.  Lucy’s gastric output, the stuff that drains continuously from her g-tube into her bile bag, changed from being a typical yellowish green color to white, literally overnight last Thursday.  ...

Way behind…

…that is in updating the old blog.  A friend told me that she knows that I will update when we are in the hospital for obvious reasons, but once we are home she worries because she knows that things are constantly occurring in our home but I don’t  blog about them.   Sad but true, I have the time to blog when Lucy is in the hospital, when at home everything and then some needs...