24

24 days.

24 days that Ash has been sick with this infection.

24 days of running IV antibiotics.

24 days of low grade fevers.

24 days of 3am wake up calls.

24 days of 3 different meds running through her veins.

24 days of light sleeping so as not to sleep through the alarms.

24 days of wondering if we will win.

24 days of wondering if the bacteria will win.

24 days is an awfully long time.

We have two more cultures scheduled.  The first in just two days.  Two more weeks of  IV meds.  Then we will see if life can get back to normal around here and we can all get back to sleeping.

Its a complicated tale

Ashley Kate's line cultures are STILL positive.  From this point it all gets a little complicated.  I'm going to do my best to document it here for future reference and as a bonus if your interested you get to read it too. If its not of interest to you don't worry...feel free to skip it.

The bugs id is Enterococcus Faecalis.

Its a natural inhabitant of the intestinal and female genitalia tracts.  So we know it came from inside of her.

It being an opportunistic bacteria made its way to her central line.

It can be life threatening.

It is known to be extremely hardy.  "It has an intrinsic resistance to many antibiotics and a remarkable capacity for developing resistance to others."

"Its naturally high levels of antibiotic resistance contribute to its pathogenicity."

Vancomycin is usually the last "big gun" chosen to treat it.  Its ability to become vancomycin resistant is a fearful reality.  This was our first choice to battle the infection.  It didn't work.  It did do damage that has yet to reverse to her kidneys.

It showed sensitivity to both vancomycin and ampicillin.  This means in the lab they have been able to effectively kill the bacteria with each of these antibiotics.  In her line we have had no luck yet.

In most cases it proves to be VERY difficult to clear from the line.

In any other patient the line would be removed and a new one placed in another location.

All physicians working on her case know and realize this is not an option so we just keep treating.  They are working hard to figure out a plan.

We saw infectious disease this morning and began the new treatment plan.

The original idea and most ideal for success is to mix  ampicillin and gentamycin. This is not an option because of the damage her kidneys have sustained from the use of vanc earlier this month.  Gentamycin is also nephrotoxic. The risk of further damage is too high at this time with her kidney numbers.

Instead we will continue treating with ampicillin every 8hours and in between the infusions we will lock the line with the antibiotic allowing it to dwell inside the catheter for the 7 hours in between. We will also lock the other lumen for the 6 hours that her TPN is off.  Each day we will alternate the routine between lumens.  Cultures will be drawn again on Tuesday and Friday of next week.

Hopefully this will work.

In the meantime her med schedule is such that we had to pull Allie from a tournament in San Antonio this weekend.  My heart is sad for Allie, but she is so understanding and so amazing. She is a great big sister.   I do my very best to keep life as normal as possible for the older kids and to keep them as involved in their activities as much as we can.  Traveling that far from home is not a good idea while we are working through this infection.  I'm disappointed, but know its what is best.

Ash remains her self.  The only difference we see in her is a few small fevers here and there and some extreme thirst while her BUN is so high.  We are running extra IV fluids for her to keep her comfortable.  She is funny and silly.  Still laughing most of the time and sleeping well.

I've never seen a line infection such as this in Ash.  She's not acting sick which tells us she's not systemically infected with the bacteria.  Our hope is to keep it isolated in the line and keep it from spreading throughout her blood stream.  Not knowing if or when that could happen is why we must keep her close to home.  Just in case.

Overall, it sounds complicated...but we are still living life...just keeping it close to home this holiday weekend.

A weekend spent with Allie B.

 Your

is inspiring.

(seriously, she is THAT strong!)

Your

teaches me SO much.

(taking one with the head to win possession)

Your ability to set a 

and go for it encourages this momma's heart!

(Oh yes, the ball did go in!)

Allie B. I just wanted you to know that I am learning so very much from you.  The way you stare in the face of those who say you can't and show them that oh yes you can makes my heart smile.  I'm so proud of you.  So very excited to mark this "header" off your bucket list with you.  I wouldn't have missed that moment for the world! 

As we begin the next chapter of your life I will be right beside you as you chase your dreams, achieve your very best potential, and grow into the amazing young woman you are destined to be.  Watch out high school...here she comes!  Looking forward to experiencing it all with you sweet girl.  

Back In

Ashley Kate and I are spending the evening back in the hospital getting her a much needed blood transfusion.  No one has any idea why her body is using up but failing to produce the amount of blood that it needs.  Just another unexplained event in the life of transplant.

Our physician flew out of the country this morning but before he left he had consulted with infectious disease.  Actually last week he consulted with them, and so in his absence they will be rounding on us this evening.  They  have ordered a huge panel of labs looking for answers.  At this point in the "game" we aren't really concerned with new diagnosis.  We accept where we are, treat the very best possible way, and then go home to live her little life.  I'm hopeful its that easy for us tonight, but you just never really know when new eyes are looking her over.  Ash is complicated medically.  About as complicated as a pediatric patient Longview has ever seen and so its a challenge to find different disciplines willing to tackle her.  We are thoroughly pleased with the teams we have involved in her care.  We are all on the same page.  We all have the most important goal in mind...quality of life.  There are no cures, no easy paths, no clear answers anymore.  We just live life and take the challenges as they come.  Its really ok to be in this place.  Funny to "hear" myself say those words, but its simply ok.  Life is easier when we aren't trying to fix her or her figure it all out.  Just watching her grow, seeing her smile, and celebrating each day is enough for us now.  Ashley Kate will never be healthy.  She will not be healed.  I have finally accepted that she is a chronic patient and will always have difficult medical obstacles to overcome.  How I wish it were different, but it is not.  

What is important to me is that she is living a happy, joy filled, blessed, life.  If I can do anything to make it easier, better, or more enjoyable for her then that is what I strive to do.  I love her like crazy.  Simply adore this child and all she is.

Yes, she has a very dangerous, very stubborn bacteria living inside of her central line with the potential to make her very ill.  Still she has no idea its there and doesn't act bothered by it in the least.  I can sit and stress and worry and make myself physically ill, but it doesn't change a thing.  The best I can do for her is stay on top of it, get her the treatment she needs, and wait for it to clear.  So...thats what I'm doing.

We aren't sure if the blood issues are related or caused by this infection or if they are simply occurring at the same time.  I would like to think they will resolve with the infection and not become her new norm.  If she continues to require blood transfusions at this rate we may have to begin a series of iron infusions to assist her bone marrow in making its own blood supply.  Its been thrown out there, but for now is not the plan.  I sure hope it won't be necessary.

I just wanted to update everyone on our where abouts this evening.  Its just us girls hanging out in our room at the hospital.  Hoping to fill her up and discharge back home to our beds later tonight.  Have a great evening.

Assurance

Each morning around 4am for the last two weeks I have tiptoed into Ashley Kate's room and used the light from her closet to hang her IV meds.  I try to be as quiet as possible as I open the packages on the syringes, put on my gloves, and prepare the line.  When she starts to stir I whisper to her, "Its ok Ash, its just mommy."  The same phrase I've used with her a thousand times as she lay sleeping or trying to sleep in hospital rooms across this country.  It seems her whole 6 years of life I have found myself reassuring her that everything was going to be ok.

Each morning she opens her beautiful eyes to peek and make sure "its just mommy" and then as she closes them again she signs to me this one word..."home"...and then I say to her, "Yes, sweet girl you are home."  I watch her turn her little self to the side, snuggle underneath her quilts, and then tuck her tiny hands underneath her cheek as I finish connecting her to her meds.

Before I leave the room, as her eyes stay tightly closed and just before I turn out the closet light she signs to me, "listen".  I begin her CD and listen to make sure the music softly plays before returning to my own room again.

In one short hour I will return to her room to take down the antibiotic and flush her central line.  Again, she will open her eyes to peek at me, then she will sign "home".  I will repeat my reassurance to my beautiful girl that she is in fact still home, in her bed, in her room.

I don't know why this exact exchange takes place every night.  Maybe she likes to hear those words, "you are home".  In her sleepy state perhaps she just needs to be reminded.  Perhaps she is reminding me.  Either way I feel a smile come across my face every single time.  Its one of the sweetest moments of my entire day, and as I lay my head down on the pillow for that short hour I find myself thanking the Father that we are indeed home.

Oh, how I LOVE this little girl!

Highs and Lows

High sodium

Low red blood cells

High chloride

Low hemoglobin

High urea nitrogen

Low hematocrit

High creatinine

Low platelet count

High calcium

Low albumin

High phosphorus

Not too many things in her blood work came back normal.  Most everything is out of normal ranges.  The most stable numbers have come from her liver.  Go figure!  Thats the part of her body we expect to show signs of struggle on her weekly labs.  I'd argue these results and perhaps request a new set of labs except that they have been this way for the last 4 sets.  After that many sets of numbers looking all the same you kind of have to accept that they are accurate.

None of this makes any sense.  She looks fantastic.  She's happy.  Feeling better.  Playing.  Even swimming this afternoon.  She's expressive.  She's silly.  Bossy.  She's doing so well on the outside.

Add positive blood cultures to all the highs and lows in her lab work and it all equals a very sick little girl.  Somebody just forgot to let her know how sick she is today.

Not sure whether or not to push for answers this week or just accept where we are and keep things as normal as possible for Ashley Kate.  Nothings easy anymore.

Not Sure

We have another set of positive blood cultures.  Its the 5th set and we just aren't sure what to do about the very resistant and very stubborn bacteria residing inside of her central line.  We have faced some difficult infections in the past, but never have we met one such as this.  Nothing we have tried has been successful inside of her line.  In the lab the bacteria responds to the antibiotic but inside of Ashley it does not.

We are stunned.  Numb.  Afraid.

In addition to the positive blood cultures her CBC shows us that she is either bleeding from somewhere internally or her body is devouring her blood supply.  I have no idea what is going on.  Her hemoglobin is very low again, losing about 2 points between blood draws and her body is not showing us any sign of working to replenish it on its own. Her hematocrit and her platelets are dropping as well.   She needs more blood this week.

All of the "go to" reasons" for the low blood supply or lack of ability to make its own have pretty much been ruled out.  We initially thought that is was low iron because of her extended reliance on TPN, but once replaced it should have maintained for a little while.  Instead it seems to be lost inside of her body with no culprit to blame.

On two occasions in the last 2 weeks I have discovered her to have a mouth full of blood and large blood clots(the size of a quarter!) sitting on her tongue.  After the initial panic and shock we searched for a reason and found none.  The best we could come up with is that  perhaps its coming up from her esophagus or stomach as a side effect of the years of vomiting.

Her liver seems to be stable.  At least according to all the blood work we have seen and believe me when I tell you we are doing lots of labs as of late.  So we have ruled out her liver as the cause of the blood issues.

So we are left unsure about what course to take from here.  There are no easy answers.  No obvious answers.  No answers at all today.  We will begin digging for more in the morning and hope to come up with a plan to effectively treat this line infection and to get her another blood transfusion as soon as possible.

The good news is the sound of her giggling that floats across the room at this moment.  She's not concerned one little bit about all of this.

New Cultures

Holding our breath tonight hoping NOT to hear the phone ring.  Blood is at the lab, cultures are hopefully NOT growing.

She looks SOOOOO much better than she has all week.  We are very, very hopeful.

Time?

At what point do you realize that its time?

 Time to take something that has been so much of who you are for so long that you can no longer see it as anything other than part of you and allow it to end?

When strangers can take something that is yours and use it for something it was never intended to be used for regardless of whether or not you agree?  I don't understand how someone can use something that was not theirs to be used?  To miss the purpose of what is written?

I'd like to say that this wasn't for you...it was for us.  I do not know your intentions.  I'm sure they were for good and not for harm, but still you failed to ask us.  The ones to whom these words belong...and that...feels awful.  Really awful.

I just wish they would have asked what we thought before moving forward with what they wanted.  There is more to the story and to our reasons why.  Lots more that no one else could possibly know about.

All Agreed

Yesterday we all agreed that we think Ashley Kate began to feel better.  She just seemed happier and more comfortable.  I can't say for sure that we are winning this battle, but she laughed more than she fussed, had more energy than I have seen for a couple of weeks, and overall just looked better.

She's pretty tough when it comes to not feeling well so its hard to judge accurately how good she is feeling, but at the end of the day it just felt like a good one.  A better one than the previous 14 or 15.  I'm grateful for that.  Really grateful.

We are  hoping for today to be even better.  We all need a little rest.  The interrupted sleep schedule and 4 am med is keeping me exhausted.  I believe we will be taking naps here today.  We have 8 more days on this schedule and then we hope to have clear blood cultures allowing us to get back to a normal pattern of sleep.

As the school year winds down and our summer tournament schedule winds up I feel the need to catch up on my sleep.  We will be on the road for the next 11 weekends and then we have a birthday to come home and celebrate.  It seems so surreal that we are compiling lists of colleges, sending emails to college baseball coaches  and playing showcase tournaments all summer long.  Where did the time go?

In one short summer I'll have TWO in high school!  I find that sooooo unbelievable as well as very exciting:)

Hope you day is blessed.

Speechless

Monday morning I sat in the gymnasium at the junior high and waited for my Allie B's name to be called so I could watch her walk in front of a group of her peers(cringe) to receive an award at the annual end of the year ceremony.

As I sat down next to a friend another mother of a friend of Allie's slid in front of us.  We all sat and watched and waited and even whispered to each other as we caught up on the latest volleyball news for our girls. It didn't take long for the woman in front of us to begin.  She went through this and that and this and that and shared with us some things that had her upset.  We listened politely, neither of us being very close to this woman, but realizing we would continue running into her for the next 4 years as all of our girls interact and play ball together.  I seriously don't know her well, but just enough to be polite and friendly toward her.  Since I'm not that familiar with her I didn't know to expect what was to come out of her mouth next.  

This is the part where "speechless" comes in to the story.  How I wish I knew what to do, to say, or how to behave in these situations!  Instead I just sat silent, hurt, stunned, and stinging from the words to be shared.

As I said before I don't know much about this woman other than her children are all very talented, very athletic, and incredibly smart.  I also know she is an employ of the school.  She's a teacher.  Of what I do not know.

She began to complain about her day and to share with us how she had really wanted to take a half day Monday in order to get things ready for her sons graduation activities.  A senior picnic, awards ceremony, and baccalaureate.  All very acceptable reasons for needing to only work for half a day.  I got it.  Understood it.  Reasonable if you ask me.  Then she went on.  Its at this point in her sharing that I began to get uncomfortable. As she continued to explain very heatedly why she was denied this half day off from work she got more and more upset.  She was very bothered that she had been denied because of the Special Ed students prom.  Apparently only one student from the class would not be attending and it was because of this young ladies need for a teacher or supervisor during the school day that this employee of our high school would be required to stay at work.  She used the words stupid and ridiculous when describing the parents who had denied the attendance.  She used a few other words I won't mention and all the while I can feel my face turning red and my insides shaking. Then she said these words to me, "To top it all off not only do I HAVE to stay and babysit this girl, but she is in a wheel chair and wears diapers and can't even get herself to the bathroom!  I have to clean her up all day long because of this stupid prom!"

I sat silent.  Speechless.  Hurt.  But...mostly injured.  I couldn't believe that this woman who had stood in the foyer of our home and watched Ashley Kate in her play room while I cleaned her up was saying these words in front of me.  To me.  I was stunned.

Its been three days since our encounter with this teacher.  This woman who receives a paycheck for taking care of our students.  I still can't quite understand how I sat silent and said nothing, but I honestly have no idea how to respond in a situation such as this.  It is for this exact reason, the fear of Ashley being thought of as a burden and resented because of her disabilities, that we have chosen to keep her out of the system.  We understand that many of our friends who teach don't understand our choice.  I really do.  Ashley could never share with us how her day had gone or what words had been said to her.  We would never know if she were made to feel uncomfortable or as a burden or if she were afraid by a caregivers attitude toward her.  Although I do not believe in any way that this teacher would EVER harm or intentionally hurt one of her students.  In all honesty I just think she wasn't thinking as she vented to us.  To me.  A parent of a child very similar to the one she was describing.

When we see Ashley Kate we SEE Ashley Kate.  We don't see or focus or point out her handicaps.  Call us blind, call us naive.  We just love her for being her.  Even though I know I'm changing diapers all day long and transferring her body, and cleaning up her vomit, and tending to her needs...I still don't give it a second thought.  She's just Ash.  She's beautiful and funny and amazing and smart and precious.  She's Ash.

I'm hopeful that someday I will find the courage and the grace to speak up when I find myself in this situation.  Its not the first time.  I imagine it won't be the last.  Its a hard place to find yourself and while your heart is pounding and your hands are shaking and your eyes are brimming with tears its so very hard to find your voice.

So I sat...speechless.

After Midnight

Nothing good ever happens after midnight.

When the phone rings at this hour I instantly know its not going to bring good news our way.

Without answering it I already knew.  The ringing told me right away.  Even in my sleep I knew.  I allowed it to ring and ring and ring willing it to stop, hoping I wasn't really hearing it, and prayed over and over and over, "Don't let it be positive, please don't let it be positive."  It stopped ringing and my heart still pounded in my chest.  I kept my eyes closed tight as the ache in my stomach started.  For a few minutes it was quiet, and I hoped it had been the wrong number.

It rang again. I reluctantly answered.  The voice on the other end introduced themselves as doctor so and so and informed me of what I already knew to be true the moment the phone rang the first time as it interrupted the quiet and pierced through the stillness of our night. Ashley's 4th set of blood cultures are positive.  Despite our best efforts at treatment and damaged kidneys and sleepless nights and round the clock IV infusions.  Her central line is still infected.

What now?

All we know to do it continue treating.  We continue treating until we win the battle.  We keep on keeping on in hopes that we will eventually be victorious and she will once again beat the odds.

My heart aches.  My stomach hurts.  My eyes sting.

In 30 minutes I will begin another IV antibiotic and as I sit and wait for it to infuse into her blood stream I will WILL it to be the one...the beginning of the end of this infection.

This infection is unlike any she's had before.  Unlike the others in such a way that that she's not septic from it.  It doesn't appear to be systemic.  She has none of the normal symptoms of a line infection.  Ash is pretty text book when it comes to line infections.  This time though its different.  She just feels...not right.  Not miserable or feverish or trembly or nauseated.  She's just...not right.  She's irritable.  Fussy.  Opinionated.  She smiles a little or laughs at a few things, but she's not happy and giggly and joyful.  We know its the infection that has stolen her normal personality.  You can tell she doesn't feel good, but its very different than what we would expect from a line infection.

On top of her positive blood culture, her lab work proved to be unimproved as well.  The renal function has not turned around yet and her hemoglobin is dropping again.  Its lost two points since being infused last Thursday.  This is concerning to us because we don't know why she's losing blood.  There are no obvious reasons.  I imagine at this rate she will require another transfusion at some time later this week.

If you look at the big picture I suppose you could attribute all that is going on as her body getting tired and beginning to wear out.  I suppose that is whats on the mind of her team of physicians.  We don't hear from transplant at all these days.  I called them and spoke to them at the request of our pediatrician last week about the need for the transfusion. They didn't have much to say.  She's not actively listed at this time and so she's not on their radar screen.  I guess she technically is, but at a very, very far distance.  Her Shreveport team has been in contact with me several times this past week.  All are concerned and all want to watch her closely, but no one has any answers.  In any other "world" she would be sitting in a hospital room, growing up as her days past her by, while everyone waited for things to change for the better or the worse.  I just can't sentence her to a world like that.  Its not in me.  She deserves so much more from me.  She's just a little girl who wants to grow up.  I'm doing my very best to give her the most "normal" childhood I can in the face of such NOT normal circumstance.

At this point in her life not much scares us anymore.  I mean, we are afraid of course, but we are more determined to keep her here where she feels safe and loved.  I'm not sure if that makes sense or if you can understand what I mean by those words.  When the voice on the other end of the line sounds panicked and concerned and unsure of how we will take the news they are delivering I listen and then I thank them and then I do what I can to make what needs to take place in order to take care of her happen.  Here.  In our home.  Until its absolutely necessary for it take place some where else.  When it is necessary I pack her little bag, grab her pillow, and a quilt and off we go with the goal to get back to her home as fast as we can.

I know this may sound insane but we have been so blessed the last couple of years.  We truly have.  We are surrounded by a team of professionals who want what we want for our daughter.  They trust us...we trust them...we all want what is the best possible life for Ashley Kate.  We all agree that that best life is going to be best lived here in her home.  They move mountains for us.  Seriously they do.  I sometimes stand back in awe of what they accomplish for her.  For us.  For our entire family.  We are blessed by some amazing people in her life.

So tonight my beautiful girl with her long brown hair, delicious cheeks, and rosy red lips lies sleeping down the hall from me in her own room, in her own little bed.  She is peaceful and content.  TPN and meds are infusing into her veins.  Other than the IV pole, lines coming out of her chest, and stack of medical supplies, you can't tell she's sick.  The lights from her IV pumps blink in the dark and create just enough light for me to look at her face.  I drink her in.  Burn her image into my heart.  Allow her beauty, her sweet image, to soak into my soul as I reach out to brush my fingers across her face.  She's here.  With us.  Still living.  Still thriving.  Still impacting her world.

We are SO blessed.

Toxic, Damaged, Reversed?

A little over a week ago Dave and I first noticed Ash didn't seem quite right.  Just a feeling, a suspicion that led us to draw cultures.  The cultures confirmed that she had a line infection.  Not an infection that made her really sick, but one that was there and had the potential to make her very, very sick if left untreated.  We began a course of vancomycin to kill the bacteria in her line.

Vanc is a dangerous drug.  All drugs are dangerous.  Its the nature of the beast.  They all have side effects and all run risks of doing damage.  Although we all felt quite comfortable using vanc because Ash has been on it so many times in the past.  It has been the "go to" antibiotic for almost all of her line infections over the last couple of years.  The bacteria growing has always been sensitive to it.

We currently do bi-montly lab work on Ashley Kate.  We draw a CBC, CMP, along with mag and phos.  Ashley's line culture was discovered a few days before her labs were due to be drawn and they showed sensitivity to the vancomycin so a course of treatment was started.  We had no idea that what was being used to treat her infection would become so toxic.

Vanc is a nephrotoxic drug.  Meaning it can cause damage to the kidneys.  This is what has happened.

Last week Ashley's CBC showed her hemoglobin levels has dropped to 6.5.  Very low.  When you combine a normal dosing of the antibiotic (based on her weight) with such a low level of blood in her veins it can be a recipe for disaster.

Ashley's labs are showing that damage has occurred to her kidneys.  The kidneys act as filters and they remove  certain elements from the blood and make waste of them in our urine.  Ashley's blood work, the last 3 sets, have all shown her to have high levels of chloride, urea nitrogen, creatinine, phosphorus, and sodium.  Her renal function is declining.  She is urinating normally, actually very well, but its the blood work that holds the keys to actual renal function.

What does all of this mean?  We aren't sure yet.  All the research shows it can be reversed over a couple of weeks time, but it can also be permanent.  We just have to wait and watch.  Closely!  The long and short of it is if it doesn't reverse itself we may for the first time in her life have to consider dialysis.  This has been a huge hurdle Ashley Kate has always been blessed enough to avoid.  Even in the gravest of times in her recovery  we have been able to avoid it.

We are currently waiting for her lab results to come in for today.

How is she?  How are we doing with this news?

She is doing well.  She doesn't feel as good as she usually does, but she's not acting sick either.  She seems to be a little irritable and frustrated.  Very unlike her norm.  We are doing ok today.  I've had a very nervous, unsettled weekend, but today I feel more calm.  Dave is always calm.  Always positive.

Her blood cultures from Saturday morning came back positive yesterday afternoon.  It took longer for it to grow out than the previous two sets, but its still positive.  Friday afternoon we switched antibiotics and are waiting to see if its going to work.  New cultures were dropped off today.  There is talk of doing an antibiotic lock in her line to allow the drug to dwell in the catheter as opposed to just being pushed through it into the blood stream.  It could work.  The problem with the lock is that the antibiotics weaken the walls of the line and can lead to cracking and splitting of the catheter.  This is what happened while we were on the ship in Alaska.  We will weigh the risk and benefit ratio based on what her lab work tells us today.

This is a very long explanation of what has been happening in our world the last week or so.  This,just like every entry, is just a piece of what life is like around here.  Just a small glimpse, not the whole picture.

Ultimately, I'm going to say this...God gave Ash to us.  I'll never really understand why He chose to trust us to be her parents, but He did.  We are honored, blessed, and completely humbled by it.  Doing the very best job we can to make the very best decisions we can to give her the MOST quality of life possible.  That's our goal...give her quality of life.  It may or may not include another transplant.  Only He knows if organs, timing, and stability will all line up together to make it possible.  There is so much more than most will ever know or understand that goes into making a transplant work.

Your prayers for her, presence in this place, and encouragement  are always appreciated.  Always.

Reminding Myself

That...
Its...my blog
Their...my kids
This...is our space
We're...walking her journey...together...as a family
 And...allowing others to follow along

Just remembering why this place is here and what its here for.  You can take anything said here and take it out of context if you wish.  You can miss the meaning of the post if you want to.  You can be offended by the thoughts and emotions of a grieving heart if you try to be.  My intention is not to hurt or harm others.  It is to accurately and honestly record the place we are in at any given time for our family to have a record of our life. Its written for us.  Your welcome here, but not required to stay.

Again, just reminding myself why I even do this:)

Managing

Its tough to look at Ashley Kate as she plays on her Ipad, giggles uncontrollably, and controls the house this morning and remind myself that she is in fact quite sick.

I'm fielding phone calls from every direction, making decisions based on the combination of presentation and lab results, and doing the best I can.  Its overwhelming to be told how sick she's supposed to be.  I'm looking at her, caring for her, observing her and there are no signs of illness, but inside her veins lie the truth behind what everyone is saying today.  Her blood give us huge clues as to what damage has been done.

Ash is having some renal issues due to the vancomycin levels in her blood stream.  With such low hemoglobin and the dose of antibiotic prescribed it seems to have done some damage to her kidneys.  We are seeing small improvements in most areas, but one has not responded.  The vanc has been stopped.  Actually there are no antibiotics running to kill this infection at this time. I'm waiting to hear what they want running.  Obviously there is no vanc running.  The second antibiotic is a partner to be run in combination with vanc and the bug as of last night has shown no sensitivity to it.  So...we aren't doing anything but giggling, playing, and laughing.

What do you do in a situation like this?  I mean we could sit in a hospital room and wait for decisions and answers and observations to be made...or we could sit at home and play and do all those same things.  She was in the hospital last night and I kid you not the statement made was this," She looks better than I have ever seen her!"  Made by none other than her physician.

I'm doing my best to manage all the emotions that come with all the worst case scenario scenes I've been given an not allow them to play through my mind.  We could always live in fear of those stupid scenarios or we can choose to keep on living.  Today I'm choosing to let her keep on living.  Seriously, she wants to know what all this fuss is about.

2 to go

4.5 hours down and only 2 more to go until we discharge and make it home.  She's the happiest, feistiest, most stable sick little person they've ever seen!  She cracks us all up!

Her renal function took a turn for the worse along with her CBC yesterday causing her doctors to be concerned about the vanc level in her blood.  Results this afternoon showed it was 4 times higher than it should be!  Very, very concentrated with so little blood in her system.  Needless to say we will be holding the vanc and drawing a new trough level tomorrow afternoon.

The course of treatment from here on is undetermined.  The infection proves to be in the line but not systemic which is why she is so happy and not miserably sick.  Clearing it is proving difficult since it has had no response to the antibiotics.  Her doctor is consulting with infectious disease in the morning to determine what course we should take from here.  For tonight she will only receive a dose of rafampin which will allow us to get our first full nights sleep in over a week.  Once we make it home that is:)

Tonight I find my heart thankful for all those who so willingly donate blood.  I have no idea whose blood is running into the veins of my sweet girl, but as it trickles out of the bag and is pushed through the pump into the catheter that is inserted into her chest I can see the color returning to her cheeks and a very bright sparkle in her eyes.  For this I am thanking God for the donor who so freely gave.  You never know what life you are going to touch or save with such a gift.

So as I listen to the giggling of my sweet 6 year old girl I whisper my Thank yous to the only One who knows the one who gave this gift to us.

Fill Up

We will take Ash into the hospital this evening to get a little fill up.  If all goes according to plan we will stay about 6 hours and then be discharged.  She is giggly and funny and feeling good today although her labs are all at critical levels.  Its so hard to realize how sickly her body is when her spirit is so strong.

Her new blood cultures from yesterday grew out the same bacteria as last week.  That tells us we haven't been successful with this round of vancomycin.  I'm not sure if changes are in order or a much longer course but we have a few more days on this initial one.  I took the call after midnight from the lab and my heart sank resulting in very little rest.

I'm dragging this week. Feeling really worn out and tired.

On the upside of things, if Ash has to be sick...I'll take this sick over any other that we've seen her go through.  She is absolutely precious.  Her laughter fills the air of our home and it makes me smile from ear to ear.  I'm so thankful she isn't really feeling the effects from the infection and low blood volumes.  She's just as happy as can be.  I love that.

Doesn't Always Add Up

Ashley's CBC results came in even lower than the previous set.  I was a little stunned to see her numbers drop even lower.  In the world of transplant things don't always add up.  With numbers like we have today Ashley Kate should be pale, lethargic, miserable, and aching.  Instead she is fiesty, spunky, independent. bossy, and loud.  So not completely herself sweet self  but certainly not what she should be with a hemoglobin level of only 6.5.

I look at my miracle girl today and I'm grateful she's here.  Low blood volumes, line infection, and all.  She may have three different infusion pumps running into her little veins, and she may be a handful with all the extra meds, bells, and whistles, but I'm grateful.  Beyond grateful as Dave and I learn of a little one being laid to rest today.  Our hearts break for the family and our focus shifts to gratitude for the little life that is all  snuggled up under her quilt in the recliner at this moment.

Some days are easier than others in our world, but I'll take today and all its struggle and worry over the day where she's no longer here to worry about.

We are waiting direction on a transfusion.  They are checking with the blood bank to make sure they can locate some O+, CMV-, irradiated blood for our little gherkin.  I assume we will spend the majority of tomorrow inpatient as they infuse and observe.  Things aren't emergent today since she's not symptomatic or showing signs of struggle, again things don't always add up since she should be according to her labs.  We are hopeful to  go in tomorrow and have her tanked up and stable before Friday so we can look forward to and enjoy Blake's games.

Ash is nothing short of a miracle as we approach the 2 year mark of the beginning of the end of her transplanted bowel.  It was just days after mother's day that the struggle began.  We spent that entire summer fighting to hang on to our little girl and never knowing from day to day what the next one would bring our way.
Today she lies sleeping with a struggling central line, a blood infection, and a very low volume of hemoglobin, but the point is she lies here.  I'm grateful. Everyday I'm grateful.   Beyond description grateful.

Did I forget to mention...

how MUCH I LOVE this kid?

Just in case I have failed to say it lately I wanted to say it again.  I LOVE this KID!

... and we are just a LITTLE excited about the play off games this weekend.

I love him, love baseball, and love that he is loving every single minute of playing the game.

I'm just so blessed to be his mom.

Somewhere in the Middle

Ash is...

Somewhere in the middle of feeling good and feeling bad.

We've seen her be really, really sick from line infections.

We've seen her be really, really feeling strong, "healthy", and good without a line infection.

At this point we don't really have either of those extremes happening.  Shes not feeling awful, but shes not feeling good either.

Its obvious that she doesn't feel good as she continues to have break through fevers and some trembling, but shes still amazing to watch as she plays her ipad, communicates her wants and needs, and occasionally giggles despite not really feeling up to a lot of activity.

The bug has been identified and looks to have come from her gut again.  Seriously, less than 2 inches of gut remains but yet it can make her sick?  I don't get that.  Its a very difficult bug to treat.  Not a lot of success in clearing it out of central lines, but Dave told me tonight to just stop researching and reading about it.  He knows me well.  Knows I will stay up reading everything I can and end of up worrying about all that is supposed to happen.  He also knows that God is in control and that Ash has come through some nasty line infections over this last year.  So reading and worrying and researching isn't going to do me any good.

Overall she is holding her own.  In true Ashley style she's writing her own book, doing this her way, and not letting anyone tell her how its supposed to be happening.  I love that about her.  In fact it makes me quite proud of her.

We will treat for 10 days, hope it all clears, draw new cultures, and go from there.  In the meantime she's taking it easy.  My mom is here now which is going to allow me to keep Ash at home as much as she needs and for as long as it takes.  What a blessing.

Thanks so much for continuing to pray for Ash.  Truly its appreciated.

Love this Kid

He is simply the BEST around!  I LOVE him!

Blake and his high school baseball team has made it through round one of the road to the state play offs.  We couldn't be more excited or proud of all of these guys.  They are such a great group of kids.

Blake loves this game and its his love of this game that make us love it too.  He works so hard!  He caught two amazing games yesterday and gave it his all.  Last night he couldn't move a muscle he hurt so much.  I stared at him from across the room and although his body ached I could see the joy on his face as he sat motionless.  He was exhausted...but happy.  I love that!



I'm proud of you kiddo.  You play with your whole heart and give every ounce of everything you have to give when working behind that plate.  It is a JOY to watch you. God has really blessed you with a talent to play the game and I'm so grateful for the opportunities He gives to you.  Remember to take time to slow down enough to thank Him for your successes.

You were amazing yesterday! I still can't believe I get to be YOUR mom.   Dad and I are pulling for you guys and praying for you every day.  Enjoy every  minute of it.

Just by looking

Today Dave and I looked at Ashley Kate and agreed..."She doesn't look right".  Couldn't put our finger on anything in particular, but just knew she wasn't right.  No fevers, no extra vomiting, nothing really other than a feeling.  We chose to draw some cultures from her line and drop them off at the hospital lab.

We got the call at the end of Blake's game.  Positive blood cultures.  Growth.  An infection.  UGH!

She's not presenting with any typical symptoms.  She just seems to not feel that well.  We are still waiting to hear what they want to treat it with.  I'm kind of giving up any hopes of receiving meds tonight as the minutes tick by on the clock.  I don't think I'll sleep well tonight knowing we need to be attacking the bug but aren't yet.

A close friend of mine texted me tonight and said, "its a good thing you have those instincts."  I replied, "I wish I didn't have to."  and then I just felt sad.  Sad for Ash.  Sad that she's sick.  Sad that this is how life is.

I can't imagine a life of not having to be on gaurd.  Of not having to know when things aren't right.

If I'm honest about it I'd have to say I'm glad we can tell just by looking, but sad that we have to keep looking.

Totally Random Bits and Pieces

Trying to organize my thoughts this morning and there are a least a thousand things running through my head.  Our schedules are so busy and although summertime is supposed to be a slower, more relaxing pace I have realized that this is not to be true in our household.  I'm totally not complaining, just trying to fill in the calendar and seeing that life with two teenagers is crazy!

So lets talk about the book Dave gave me for my birthday.  Have you ever held a book in your hands and realized that every single word inside of it was written by you?  Seriously an incredible feeling.  Page after page my heart, my life, my experiences poured out.  Really cool.  I had no idea it would effect me so much to see it in print.  Watching it typed out on the computer screen and then hitting publish is so different than actually seeing it all compiled together.  Knowing that there at least 20 more volumes coming my way is so exciting!  Its like the gift that never ends:)  Its funny because I can sit and read page after page and then come across an entry that I just can't get through and I have to put it down.  There are some really difficult days shared in this place and reading about them again isn't an easy thing to do, but I can't express how grateful I am that they are recorded.  One day my Blake and Allie will open up the volumes of Ashley's Story and have an inside look into our hearts.  That part is soooo cool.  Blake and Allie have never read our journal.  They have lived it, but they have never been allowed to read it.  I think God is going to move in their lives one day using this story.  I'm excited about that.

The book is not for sale, but the cool thing is you can still read it.  I mean as long as blogger is up and running its here for you to read.  Several people asked who printed it for us.  Apparently there are lots of companies who print blogs into books but Dave used(and seemed to be happy with) Blurb.  I don't know anything about it, but he said it took him a couple of weeks to get the first book printed.  He could fit 240pgs into it.  That was about the first four months of our blog.  Now he's working on then next 6 years!

Moving on.
Ashley's 7th birthday is just around the corner.  I only have 3 months to work on it!  This years theme is "Ashley's Acres"  Down on the Farm.  So excited about it!  We are busy building a barn, locating old farming tools, equipment, dishes, and props.  My garage is filling up a little more each week.  If anyone in our area has connections we are looking for chickens, goats, bunnies, maybe a pony?  to have on the grounds.  Ashley LOVES chickens and roosters.  She is going to be soooooo happy to see them pecking around.  We are also looking for a hay supplier.  We don't need to buy and keep thirty or so hay bales, but possible rent them for the party?  I have no idea how to get this all done, but I'm figuring it out the best I can.  Anyway, here it is....SAVE THE DATE...Saturday, August 4, 2012.  Hope to see everyone there.  Seriously, if you can make it then your are WELCOME to join us in celebrating the life of our littlest girl.  Just let me know you are headed our way so I can make sure we have enough barbecue for everyone.  Invitations are being designed now and will be headed out soon.

We are in full sport mode around here.  Pre-season volley ball going on, summer league basketball, high school soccer try outs, club soccer and a tournament in San Antonio, varsity baseball play offs, and tournament baseball gearing up.  Throw in the cheer leading schedule and our calendar is FULL.  Every single week until school starts back up we are on the go with one teenager or the other, and sometimes both at the same time.  Blake has a play off game tomorrow night.  Then again on Saturday.  He also has a huge try out for the Texas Rangers Area Code team coming up next month.  I am super excited about traveling with him all summer long.  He has a 9 week tournament schedule taking him to colleges and universities all over Texas, into Oklahoma, and over to Georgia.  Good times on the road with my 16 year old.  Spending our days on the baseball field.  Life doesn't get any better in his world.

My mom and my sister are on their way here tomorrow.  Really looking forward to having them for a visit.  My mom will spend the summer with us helping with Ashley Kate and with Allie's schedule so I can travel with Blake.  Without her willingness to help he wouldn't have the opportunities he's getting and I wouldn't be able to go with him.  Ash will go a few places with us, but being on the road every week is just too much for her.  She needs to rest and to play this summer.

On the medical front she's doing as well as we could hope for with her circumstances.  Things aren't perfect in her little body, and never will be...but...she's hanging in there and living a life of quality.  In the end thats all I can hope for any of us.  Her CBC came back really messed up and we aren't too sure whats up with all of that.  Low hemoglobin, hematocrit, platelets, WBC, and RBC.  Seriously, weird.  Her metabolic panel was status quo.  Liver is struggling, but its been worse so I'm breathing a sigh of relief that it was what it was.  She is sleeping about 12-14 hours a day.  At the end of the day I look at her sleeping safely in her bed and I say to myself, "She was happy today.  It was a good day."  Her laughter fills the air in our home.  I don't regret the time we are spending with her here.  I'm at peace with our decisions to wait.  Allowing her to laugh and play and rest and be almost 7 is the best we can do at this time.  It won't last forever( and I know that),so we are enjoying it while we can.  While she can.

I'm going to wrap this up.  Wow, this was long. Random.  Scattered.  Reflective of my days lately!  That's funny to me.  I feel exactly that when I lay down at night.  Long day, random events, totally scatter brained.  Then I close my eyes and sleep so I can wake up and start it all over again.  Life is good.  I'm totally blessed!

Ashley's Story

So excited to receive my first volume of Ashley's Story in book form:)  Its an emotional read, taking me back to days I thought we'd never make it through, but its a story I'd never want to forget.  I have smiled.  I have laughed.   I have cried.  I have sobbed.   Not easy to get through, but I'm so thankful Dave started this journal all those years ago and eventually convinced me to write it all down.

For years people have been asking me to write a book.  I always shake my head and laugh when they say that...but this morning I hold in my hands the first 240pgs of her story(only  four months of the 6 years we have written down) and I can't wait to hold the next 1,040pgs!  Someday my kids will read through the pages of Ashley's Story and they will know how He has carried us through.

Thanks Dave, its the best birthday gift I've ever received:)  Happy birthday to me!