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Wake up Mama, it's the first day of school...

August 30, 2012
It's official, summer vacation is over. Lucy was the first to wake up Monday morning reminding us all that it was the first day of school, silly girl you didn't need to wake up so early. Halfway through the day she asked me if the kids were at camp.  I told her no, the kids were at school, to which she said, "I gonna tend(pretend) they at camp, kay mama."  She misses them so much.

My mama called me while Lucy and I ventured out to the store for yet more school supplies and socks that actually fit Megan's and Jack's ever growing feet.  Since all they ever wear are flip flops and Crocs how was I to know that they didn't have any socks that fit them?  She asked me if my day was quieter as Lucy was literally yelling at me to keep pushing her wheelchair so that we could find an orange folder that Megan, and apparently Lucy too, needed for school.  I had to laugh, quieter is a relative term.  Yes, it was quieter in that I only had one person, not four, talking/demanding to me continuously!  Lucy's school/therapy services are all home based due to her fragile medical status, but one orange folder for her and apparently a pink pair of scissors just had to be had according to Lucy.  Don't worry Dr. R we'll be very careful with those scissors around her lines.

I am one of those mama's who usually does not look forward to the kids going back to school, I love having all of my kiddos home.  However, this year I am feeling slightly different about the start of school.  Our daily life revolves around our kids, but in particular Lucy's daily care and med schedule.  Our summer was anything but relaxed, and our daily routines kept us all going.  Lucy gets easily overwhelmed with too much activity and with four kids in our house, activity abounds.  Afternoons had to be quiet in order for our energy deficient child to get her much needed afternoon siesta, so many a summer day was filled with extra curricular camps, outings, and play dates for the three non nappers in our house. This meant that I had to coordinate a driving/nursing schedule that rivals any international airports flight schedule.  The kids had a blast this summer and that is really what matters.  I too enjoyed as many moments of it as possible, but will admit that I had to do more some days than I ever thought I could.

On the first day of school it was back to business as usual, minus some tears from Lucy because she missed "her kids".  Laundry, breakfast served, lunches packed, dishes, showers, hair do's, backpacks packed, more laundry, meds, meds, and more meds infused, diapers changed, sheets changed, urinary catheters changed, my clothes changed, an e-mail drafted to Dr. R about the possibility that Lucy has C-diff again,  phone calls to the Department of Human Services made over and over starting at exactly 8 AM and finally ending at 11:42 AM when I was connected with a real live human being to inquire about the status of Lucy's medical assistance (oh don't even get me started, let's just say that PA changed one of the requirements for renewal this year that I didn't know about..grrrr), did Lucy's weekly lab draws and dropped them off at FedEx...ALL of this was done before noon on Monday, I kid you not!  Afterwards we were on our way to run a few errands and then quickly(who am I kidding, it takes me about an hour to do this) come home to change TPN in an effort  have Lucy in bed by 2:00pm, much later than that she turns into a pumpkin with low blood sugar.   Like any good mama Lucy and I also baked the kids some cookies for an after school treat on Monday.  Confession, I bake them cookies because I love my kids, but also because if you are going to get any "real" information out of them about the first day of school you need leverage especially if one of your kiddos happens to be a sixth grade boy(gosh, when did that happen?)!

Mom, Paul wants me to call him at 4 o'clock.

Why, what for?

Just to talk.

But you don't like to talk on the phone, and neither does Paul.

Yeah, I know.

SO, why are you going to do it?

Cause everyone else in sixth grade is doing it, so we figured we had better start too.  I mean mom, don't you think we need to start somewhere?

Ummm...NO, not really!

Jack, you know the bridge scenario...

MOM, it's just the phone!

I'm not sure I am ready for all of this...

The cookies worked, I learned more about the first day of school than I ever thought I would, sibling rivalry helped too.  For every one comment about so and so's first day, two followed about the other persons day, and so on and so forth.  Emergency cards have all been updated, you know since emergencies are our speciality, with new contact information as our dear friends the Puff's are moving to Hong Kong at the end of the week and as such a new emergency contact needed to be established.  Our hearts are torn, we are so excited for our friends great adventures, but we are so so sad to see them go...really, I'm not sure how we are going to live without them.

Lucy's weekly therapy schedule is back in full swing after having a few weeks off this summer for illness then summer vacation.  She is choosing to call therapy school this year as she is craving to be just like the big kids, "Mama, I call my therapies cool(school), kay!  School is not really in Lucy's future, but we talk to her about all of her wishes and desires like they will happen someday.  It is difficult living with a the knowledge she has a disease that is progressive and degenerative, as much as we choose to look at the positives in her life, we grieve for her and all of the "typical" milestones that most children have to look forward to in their lifetime.  Grief is a part of daily life when you have a kiddo like ours, but try not to let it get us down.

I am working on an eleventh hour post about the upcoming UMDF DelVal Energy for Life Walkathon coming up on September 8th, 2012!!  Yeah, I am way behind in doing anything for this, I know!  To all of you who know and love us and have already set aside the morning of the 8th to be with us, we love you and thank you from the bottom of our hearts for your love and support.  We are looking forward to the event.  And for those of you who are waiting on more information, stay tuned.

Home Sweet Home...

August 7, 2012

I wanted to quickly write an update to let you know that we are home, tired, and relieved to be all together under one roof.  Everything went as expected today.  We were even able to have the surgeon take a tissue sample for a biopsy that is being sent to another hospital for further testing.  Lucy's new line flows like a river.  She is experiencing a little discomfort from all of the days events, but we have enough meds at home to help her with any pain.  We are finishing up a course of antibiotics that runs every six hours, which means that sleep is going to be challenge for the next few days. Speaking of sleep, I'm going to bed.  Thanks for all of your thoughts and prayers, we could never do this alone!

New LIne Today...

August 6, 2012

Our weekend was fairly uneventful, with the exception of some pretty erratic heart rates and blood pressures for which we are blaming on autonomic dysfunction.  Lucy likes to keep everyone on their toes.  She is scheduled for a new line placement sometime around nine this morning.  Lucy is looking forward to getting a ride in her bed down to the OR, not sure she realizes what lies ahead.  It may seem that because of all of the medical complexities in our life that having surgery for yet another central line is as common to us as a kid getting a cold.  It isn't, and we're always nervous whenever Lucy and anesthesia come together.  Please keep our little on in your thoughts and prayers this morning.

Seven days...

August 5, 2012
Yesterday it hit us...the seventh day melt down, that's what we refer to what happens to our family with every admission at around the one week mark.  After seven days we are all feeling the effects of being separated, stressed, off our schedules... We're all tired, lonely, scared, stressed, bored, worried, craving home cooking, craving normalcy, and in need of a healthy dose of family time.  Usually after a week we have an idea of how and where things are going, it helps us to mentally prepare for what lies ahead.   The number one question our kids have with each and every admission..."When are Mommy and Lucy coming home?"
We are so blessed to have so many people in our life who reach out and want to help our family, like I've mentioned it takes a village!  My mom has been with us for the past two weeks,  the week prior to being admitted she came out to help us with the kids while Drew, Lucy and I spent several longs days at clinic appointments.  She was on a flight home last Saturday when Lucy and I were in the ER,  two days latter she was on a flight back to help us yet again.  As difficult as it can be, Drew and I do our best to keep the older kids activities going especially at times like these.
Divide and conquer, that's how we manage. I am forever torn between being here with Lucy and being at home with Jack, Megan and Sophie.  It is the most difficult part of living our life!  I have yet to figure out a way to be in two places at once.  I was able on a few occasions during this admission to leave Lucy for a few hours so that I could spend some time with my other kids, thanks entirely our wonderful nurse Helen and our friend Andy who just so happens to be a doc here at DuPont, but not one of Lucy's docs.  Drew does a lot of driving back and froth during times like these, driving back and forth from work, our home and the hospital, each one being a good thirty to forty five minute drive from one another, never complaining.  We both rely on caffeine to survive these days, his in the form of diet Coke, mine in the form of green tea.  He sleeps at home so that he can be with the kids in morning and get ready for work, and Lucy and I take care of things here at the hospital.  He brings me things from home after giving him a detailed description of what I need and where he can find it, and sometimes he just brings me things that he thinks I need just because.  We fall into each others arms when we are together mostly because we're just so tired.
It's Saturday, my mom is flying home this morning as she has things to do, and Drew is home with the kids today.  They have plans to have a picnic up in the finally finished tree house...not sure I mentioned it here, but the kids and Drew have been building a tree house all summer in "Their Tree".  After a total melt down by everyone last night, a picnic in the tree house sounded like the best idea ever.   Lucy is severely off her schedule and is need of a down day, it appears as if she is getting just what she needs, weekends at the hospital are eerily quiet.  We are planning a pizza party and movie night in Lucy's room tonight, and tomorrow I think the kids will go swimming at our friends house.
We have an OR time slot for 9:00AM Monday morning, and if all goes well we hope to all be sleeping under the same roof Monday night. 

Thanks as always for your thoughts and prayers, love and support!

Fever Free...

August 3, 2012
For the first time this week our girl is fever free, heart rates are considerably lower, blood counts are holding steady, and her med schedule is, well, ridiculously insane!  It looks like we are on the right track, but despite an improving fever curve Lucy is still not feeling well.  She is extremely sleepy, anything and everything seems to wear her out.  My mothering instinct is saying that once we pull the infected line we will see the Lucy we know and love so much least that is what I am hoping and praying for.  Lucy is scheduled in the OR for a new line placement sometime on Monday, pending negative cultures from here on out.  If you are reading in between the lines, we are here for the weekend...ugh.  And if you live a medically complex life like ours than you know that you are not really guaranteed a time in the OR until you receive a time slot, for which we have none, yet.


72 hours later...

August 1, 2012

After three days of growing time, Lucy's blood cultures from Saturday are positive for growth, really.  Typically when you are presenting as sick as Lucy is you would expect that blood cultures would be positive for growth within the the first 24 hours or at the very longest 48 hours, typically.  Lucy is anything but typical and once again she has proven everybody wrong.  Not sure what the plan is going to be just yet, but now we have a direction and something to treat.

Not sure...

Somewhere in this mess of wires, pumps, tubes, and blankets is a little's like a "Where's Wlado" picture.  We are still not sure what is causing Lucy to feel so sick.  It was decided during rounds yesterday that we would ramp up our antibiotic coverage and add IV antifungals to cover all of our basis.  Cultures continue to be negative, with the exception of her urine culture.   Her bladder is colonized with a specific bacteria that has taken up residence inside of Lucy's bladder since the beginning of the year.  Apparently it likes it in there and is coexisting peacefully, in other words it is not causing her to have infections.  We know this because Lucy's urine analysis is pristine, it is showing no evidence of infection.  Our wonderful urology team came upstairs to explain all of this to the new, as in just out of med school and are treating patients for the first time since receiving their diplomas, residents who are assigned to Lucy's team.  Since adding in all of the extras, Lucy's temps have come down, which has us all scratching our heads.  It's quite possible that we are dealing with a very hard to find bacteria or fungus.  Oh Lucy, nothing is ever simple with you, but we love you very much nonetheless.

Blood work is holding stable which we'll take as a positive.  Her albumin is low and has been for days,  I am hoping for an albumin infusion today.  Infusing her with albumin will help with the fluid retention, Lucy is puffy all over especially her hands, feet and face.  When Luc is awake she will engage in conversations but is very out of it looking.  We were able to change her central line dressing site with little fuss last night, so NOT like her.

Lucy's central line is in need of getting replaced, it is compromised in multiple locations making it difficult to infuse through it.  Lucy's central line is her life line, it needs to function.  Before she got sick, the plan was to head to the OR sometime in the next week or so to pull and place a new line all at the same time and if possible in the same location.  Now that she is febrile, we have to wait until she is fever free for 48 hours to even consider doing this.  Just to add to the drama, our surgeon will be on vacation next week.  So, Lucy girl, if you could just break your fevers today that would mean that we could get a new line placed with Dr. K at the end of the week and possibly go that too much for a mama to ask?

Thanks as always for your thoughts and prayers.  It takes a village and we are so blessed to have such a large, thoughtful, loving and caring village.