3

Ashley Kate is currently on her 3rd IV bolus of potassium.

Each infusion takes 3 hours.

She was admitted last night for a blood transfusion that took 3 hours.

We would really like to see her level rise to above 3.

(Yesterday it dropped as low as 1.4.  Scary, dangerously low level of potassium to have in the blood stream, but...in true Ashley form...you would have never known it unless you were reading her lab sheet.)

I just hung up the phone for the 3rd time with Dave as he told me another dose had been started and the hope for getting home had now been pushed to 10am.

First we expected, 2:30 a.m., then 6 a.m., now 10 a.m.  I'm hoping this whole 3 thing keeps going and that the 10 a.m. goal is met.  We are scheduled to leave town today at noon.

3 things could be causing this sudden decline in her potassium levels...

1.  Side effect from the antibiotic that was chosen to treat the psuedomonas.  Remember we were trying to spare her kidneys more damage and went with a drug not commonly used in pediatric patients?  If this is the cause its easy enough to fix in theory...we find a different option for treatment...sometimes easier said than done.

2.  Kidney disease.  Her kidney decline and its poor function is something we are relatively new to.  We know minimal amounts about them, like how to read lab values, and basically how they work inside the body, how different drugs are toxic to them, etc.  but we are learning.  I sat across from her doctors two weeks ago and asked them if when reading her kidney numbers they saw "red flags" that said "keep an eye on us, we are struggling, we have disease" or did they see "red alarms" screaming "kidney failure, dialysis, imminent danger".  There answer was this..."we see red flags at this time.  We know her kidneys are diseased, but we also know they are diseased from use of antibiotic and other medications used to treat her.  Its a different disease process than being born with diseased kidneys.  We don't see imminent failure/dialysis at this time.  We see a set of sick kidneys and we know why they are the way they are."   How does that make me feel?  I'm not sure how to answer that.  I know her kidneys are now functioning at close to 50%.  That in and of itself is scary.  I also know that this low potassium scare/issue is a result of something her kidneys are going through.  Whether that be caused by the antibiotic or by disease process, either way the kidneys are hurting at this time.

3.  A fluke.  Just one of those odd things that arise from time to time inside a transplant recipient's body.  Ash's body is jacked up from the use of another persons organs to keep her alive and the medications it has taken to keep those organs functioning.  This whole episode could just be an unexplained "fluke" in her journey and will be worked out on its own with a little support from IV potassium infusions.

I say all of that to say this...Ash is sick...but...Ash doesn't know she's sick.  The biggest danger in levels of her potassium registering this low is her heart.  For some reason the kidneys and what they do and how they function inside of our bodies have a direct affect on our hearts.  Her kidneys spilled out, used up, or whatever her potassium and her heart is in danger because of it.  So...we give her potassium and monitor her blood pressure and heart rate.  Its the best we can do.

My hope which may seem silly to some is not to disappoint her today.  She is planning on taking a little trip to Dallas this weekend which means she gets to go in the car for an extended drive.  She's happy about that and I don't want to take that away from her.  So I'm hopeful I don't have too.  In the grand scheme of her life being sick is what she has to do.  She doesn't get to choose not to be...but...when its possible I try and make that as normal as I possibly can and just keep on keeping on with her.  She likes it like that.

Third times a charm...I hope:)

She's Broken...

...and I know that she's broken...and I can't change that she's broken...and I can't fix anything to make her not broken.  Her body is just broken.  She was born with a broken body...she came to us...or rather we went to her...with a broken body...and she lives with this broken body.

Looking at her lab work all we see is that most everything inside of her is broken.  It sucks.  Thats about as nice as I can be at this point.

Labs this week, we are on our third draw since Tuesday, tell us that her potassium is critically low, and calcium is critically high, her serum protein is low, albumin is REALLY low, globulin is too high, total bilirubin is critically high, direct bili is critically high as well, her AST and ALT both high, and phosphatase is really high. Thats just the metabolic prophile!

Mag and phos are normal...how I have no idea:)...but triglycerides are too high.

  The CBC is a mess too.  We are working on getting some blood from the blood bank right now in hopes of giving her a transfusion tonight.

I'm doing the best I can to keep on keeping on with my sweet girl and my philosophy is this...We are going to keep living, caring for, and treating what symptoms we can since the actual source can't be repaired.  I'm going to allow her to play and laugh and smile and rest and live her very best life as best as she can and that's all I can do.

Oh, yeah...I'm not going to cry today either.

 That's my philosophy.

One day, one crisis, one issue at a time...and then...were going to go watch our kid hit a baseball...really, really, far...I hope:)

Ashley Kate Update

I haven't posted many pictures of Ashley Kate since she became so sick again for several reasons.  One of the main being the color of her skin.  It always shocks me so hard when I see the images of the photos I've captured on the screen.  I guess being with her every day kind of desensitizes me and I don't realize just how yellowed her skin has become until I catch a glimpse of it in an image.  

Anyway, I took a series of pictures of Ash the other day since she was dressed and ready to go to the hospital.   This is just one of a group of shots that made me smile inside despite her color.  Her eyes...they get into my soul with every single picture of her I see.  They always have.  Ashley's eyes tell her story.  Good days...bad days...you can always read my sweet Ashley when you look into her eyes.  I've always loved the way they can sparkle.  

So Ashley's bacterial cultures came back positive for psuedomonas.  Yuck!  Not anything I wanted to hear. We had been treating her for close to a week with no results and once the bug and sensitivities were confirmed it become clear why.  The tricky part we face at this point is in choosing which antibiotics her fragile body can withstand.  Her kidneys and her liver are so, so damaged that we can't always choose the best drug to fight the infection because of the impending damage it does to her overall health.  The choices at this point aren't easy.  Treat to kill the infection, but harm her kidneys or treat to keep the infection at bay in hopes of easing the strain on her kidneys.  Its just a difficult place to find ourselves in.  Ultimately it was decided to use an antibiotic that is not normally high on the list for a pediatric patient, but hopefully it will not hurt her fragile organ systems and push them closer to the edge of failure.  

We have not heard if the fungal infection(yeast) is growing yet and the more days we can stretch out without a phone call that tells us there is growth the better the odds are that in some miraculous way it was cleared.  I'm hopeful but trying not to be naive.

Ash continues to run a low grade fever daily.  Just enough to cause her to feel not so great.  That in combination with continued positive line cultures lets us know she's not out of the woods just yet.  

More line cultures and extensive lab work will be drawn today. 

 Most importantly though is this...Ash is hanging in there...and...for the most part...is happy.

My answer when asked how she is doing remains the same.."she's happy".  As long as I can keep giving that answer then the rest simply isn't necessary:)

Long Nights

Ashley's night times are proving to be the most difficult part for her at this time.  During the day she seems happy and playful.  A little worn out, but mainly her baseline.  Its at night though where things have taken a turn.

From what we can figure out this current infection is not systemic.  Meaning its localized inside the CVC and is not active in her blood stream.  So...when we hook up her TPN each night we have to flush the line with saline prior to connecting her to the fluids.  Within the next hour and for the following several hours she becomes symptomatic.  Screaming.  Crying.  Trembling.  Feverish.  Very uncomfortable and in a very obvious amount of pain.  This is happening every single night.  There is no consoling her.  No helping her.  We can only sit near her bed and pray for her to get through it and to find rest as she drifts in and out of sleep.  What we believe is happening to her is that when the TPN and IV fluids finish ramping up and achieve the full rate at which they will run over the next 18 hours they bring a rush of the infecting bacteria that is in the line into the blood stream causing her to feel the effects of the bacteria surging throughout her little body.

We are currently treating with an antibiotic for gram negative rods and we need to be locking the line for the 6 hours its not infusing with another antibiotic in order to kill the invading bacteria.  The lock allows the medication to sit and dwell inside the walls of the catheter and work on destroying the bacteria.  Unfortunately though we have lost blood return from her central line and this makes it impossible to draw out the medication after it has been dwelling inside the line for all those hours.  Without the ability to draw it back out we can't use it and this is hampering our treatment and hopeful clearing of the bacteria.  Usually when we lose the ability to draw out of the line we treat it with a dose of TPA which is best described as a clot buster.  Think"liquid drano" for central lines.  We have been doing this here in our home for the last year.  When we contacted our pharmacy this week to get a dose we were informed that they can no longer get it from their suppliers.  Our pharmacist spoke with Dave and shared that he believes they are making it for institutional use only at this time meaning hospitals are the only ones getting their hands on it.  Which equals an emergency room trip for any of those patients who are living with central lines and are in need of the dose.

I'm sharing all of this information with you in order to ask you to pray about this today.  Ashley needs the treatment for this line infection.  In order to get the treatment we need to have blood return from her line.  We will be attempting to get her in to the ER today with the hopes that they will be willing to help.  We have gone in the past for this exact issue and its really a hit or miss situation.  We've had the CEO of the hospital and one of the ER physicians work on a protocol to make this an easy thing to do for Ash.  The bad comes in depending on who happens to be working today.  When we were in this ER on April 1 waiting for transport by ambulance we were confronted with a very difficult situation.  I don't want to go into all the details but I will say that there are people who work in this ER who have very little compassion or understanding toward Ashley Kate and the situation we live in with her.  It is evident by their treatment of her and their attitudes toward us.  It makes a hard situation SO MUCH HARDER when we have to go to them for help in saving her in these situations.  Make no mistake...uncomfortable or not...WE WILL DO whatever we have to and put up with whatever personality we must to take care of Ash.

I've never, EVER, not one time, reported a nurse for ANYTHING.  This act was so inappropriate, unprofessional, and hurtful, that it has taken me weeks and weeks to talk myself out of filing an official complaint toward her just so that her conduct would be addressed when she came up for review.  In 7 years of hospital admissions and ER visits, I've never been angry, hurt but not angry, even when mistakes caused suffering and pain to my daughter.  I realize that we are all human and errors will be made.  Everyone is doing the best job they can and no one intends to hurt Ash.

 In this case though, the act was intentional toward us, and it effected the next three hours of our journey.  It was unkind and unnecessary.

I would appreciate your prayers today.  We are going to try and get  a hold of who we need to in order to make this a simple in and out visit.  When you live with a central line and care for it for 7 years it becomes a "no brainer" to use TPA.  It doesn't need to be a long, drawn out ordeal.

The drug shortages that are being experienced in our country are really beginning to effect the youngest of patients who are dependent on them for their survival.  This is just one of the areas that it is hitting home for us.  What should be done in our home can no longer be accomplished without a visit to the Emergency Room.

Thanks so much for your prayers.  It is our sincere hope that once the line is functioning again and we are able to treat her appropriately that this bacteria will clear and she will improve.

Confirmed

3 a.m. phone calls always mean the same thing.

Suspicion of line infection...confirmed...gram negative rods...again.

Last Thursday I sat in the doctor's office and was told "she's one infection away from taxing her liver to the point of no return."

I just thought to myself, "Well, what are we supposed to do?"

The longest period of time she has gone without a line infection since the placement of this line in December of 2010 is 5 weeks.  I knew it was just days away from happening again.

I asked her doctor's how much longer we had with her liver in this condition...his answer..."-3 years.  I would have told you it was finished 3 years ago and by all rights should have been."

Not what you want to hear.

I was also informed that yeast doesn't clear.  Both doctors agreed that the yeast infection that grew out of her line on April 1st was still in her line because it doesn't clear with treatment.  They also told me it will kill her.  They said it multiple times.    They expect it to show up any day now and told me until she has 3 months of clear cultures they won't believe its gone and for me not to get comfortable.  It will show its self again and it will show itself fast.

Not a good visit.

Its been a rough week.  Lots of disappointments.  Lots of hurts.  I can't wait for this school year to end and for the summer to begin.  I need some distraction from all that's happening.  I'm ready to watch my son play some baseball and to make some memories with my girls.  We need a break.  If there was any way to pack up and run from life I'd throw my kids in the car and hit the road.  Somewhere quiet, peaceful, and perhaps tropical.

Instead I'll wait for the box to be dropped off and start another cycle of liver taxing, kidney toxic, medications to begin.

The best thing in my world is this...she's smiling today.  Despite it all...she's smiling.

Praying for Ashley

She had a normal day full of laughter. No real indication of not being well. We played ball before bedtime. She came out of the playroom on her own and sat on her "perch". She was funny and animated.

I woke to the sounds of her cries. She is crying out. Screaming. Trembling.

There is no fever. Just discomfort. She won't allow us to touch her and so I'm lying on the floor next to her bed praying for her.  I knew I should have written a little today so people might understand what is probably happening inside of her but it is just too hard. I say probably because no one really knows. They can say what is likely going to take place but our girl sat right in front of them 3days ago and smiled and laughed and played all the while they made predictions.  All I could do was ask " would you do anything more than what I am now?"  Would your decisions be different?"  Can you look at that little face and make decisions differently than this?" She is just SO happy! Most days.

But tonight... She's uncomfortable... Sickly... Hurting... And...I begin to doubt this path we are on. I begin to panic and second guess because I know that one day the smiles are going to cease and its going to be different.  I know that and it's killing me.

So... Will you pray?  Again?  For my sweet Ashley Kate.

Ready to Talk

I sat down this morning thinking I was ready to talk.  I've been fairly silent since this latest episode in Ash's struggle and there are many, many things that run through my head on a moment by moment basis. I've been thinking for a couple of days that I was ready to start talking it out, but I see now that as I sit here I am not.  I just don't feel like opening the flood gates just yet.  Its draining.  Emotional. Exhausting.  I can't do it right now.

She had her first doctors appointment since discharge last week and I will share with you that it was hard.  It really was.  I don't think there will ever be an easy one again.  The conversations are tough to have.  Tough to get through.

I will tell you that Ash is happy.  She is feeling better and stronger every day.  There have been days in between where she was struggling, but for the most part she is just happy again.  Its hard to swallow all the information, predictions, cautions, etc.  when she's laughing and smiling and playing.  Although I know her attitude doesn't change our situation it does however make it easier to wake up every day.  What I want most for her is happiness.  Today...she's happy.  Again:)

Thank you guys so very much for your concern.  Thank you for your continued prayers.  Thank you for your presence.  It means so very much.

A Day well Spent

I spent yesterday, Mother's Day, doing a little bit of everything.  You know all those little things that aren't that special, but thats exactly what makes them so special?  I love those things.  The everyday, mundane, that makes me look at my life and my people and be so incredibly grateful.

To tell the truth we woke up feeling a little stunned and somewhat numb after the most heartbreaking loss I think we've ever had to experience in our little baseball world.  My heart was still aching from it when I opened my eyes and realized that this season was indeed over.  Blake played his heart out and put up two of his most amazing games ever in an attempt to help his team clinch the Area Championship and move on to Regionals.  At the end of the 7th inning the scoreboard read 7-5 and it hurt.  Ya'll I cried.  I cried for my son who gave his all.  I cried for the seniors who will never step on a field again.  I cried for our school because we are losing some of the best kids around as they move on with their lives in just a couple of weeks.  Blake will never again suit up and play a game with these guys and it hurt my heart!  I was so surprised by how much it hurt.  I spent yesterday reminding myself that God has something more in store.  Something we can't see today, but that is coming.  Then as I lay my head down late last night I checked my email and found a letter from the coaches who will be leading Blake for the next 10 weeks and my heart smiled.  Only 18 more days and he will put on another uniform and work one more summer closer to his dream.

After shaking off the numbness we sat down and listened to lesson 4 of the series my brother is currently preaching in his church in Oklahoma.  Guys...it is SO good.  I love having the opportunity to have my spirit fed every morning and evening.  We turn on the lessons and the sermons his church has available online and we learn and grow and become renewed.  What a blessing!  What a great way to start off Mother's Day.

We then left and went to watch Allie play her first indoor soccer game of the season.  She enjoyed it and did well.  I sat in the bleachers and stared at how beautiful she is even when she's got her hair pulled up, no make on, and sweat pouring down her face.  She loves that game and has fought her way back through this knee injury.  She works out with her trainers every morning before school and again in the evenings at the gym.  She's determined not give up on what she loves and I'm so proud of who she is.  Despite the obstacles before her, the negativity she finds herself surrounded by, and the odds stacked against her, she's fighting back.  A life skill I know she will carry with her for years to come.  I'm the support system  Its my job to provide her the best care I can and to cheer her on as she makes her way back.  I love being her mom.

Once we came home we made lunch and I sat and watched my baby as she sat out on the patio and enjoyed  all that surrounded her. ( My heart smiled at the soccer game when the coach came up and asked , "hows our baby?"  See, I'm not the only one who still refers to Ash as the baby.  Our entire home town does.  She will always be "baby Ashley".)  Even after we all came in she was content to sit there and play outside at the table.  What a blessed Mother's Day it was to have my sweet girl here.  I could see her little hands working and signing as the birds came to the feeders and the squirrels played in the grass.  She had a lot to say and my heart was happy.  Blake was stretched out on the floor in front of me.  Allison Brooke was lying on the couch.  I was surrounded by what I love most.  It was the best!  Simply the best day!

As if my day could be any better...I took a nap!  Glorious day!  Dave let me sleep for 3 whole hours.  It was so great!  I woke up to see that the clock said 8pm and I was shocked.  Ashley still needed a bath and we hadn't eaten any dinner.

To round out the day Allie helped me braid Ash's freshly shampooed hair.  I sat there with my girls and thought how incredibly blessed I am.  Life really is a gift and its so full of blessings.  We loaded Ash up and Allie drove us up to Sonic for 1/2 price milk shakes to end the day.  Just me and my girls.

Precious days.  Precious moments.  Precious memories.

A day well spent doing the nothing special that makes it so very special to me.

Surrounded By...

I sit here in our home tonight and find myself surrounded by a million little things that make me happy, and I feel blessed.  I began to make a list of those things in my mind, and it quickly turned in to a list of the million little things that made me happy not just tonight but all day.  Then the list became a list of not just today but all week.  I thought I'd document just a few.

Glitter.  Its everywhere!  Red, green, silver, pink...I've been busy glittering everything you can imagine for Ashley's 8th birthday.  It makes me smile even when I'm picking it out of my teeth!

Flowers.  They have over taken our formal dining room and have even filtered into the foyer.  I love a good party and the only thing I love more than a good party is the preparation for a good party.  It makes my heart happy to be planning an 8th birthday.  I wake up everyday and work on another piece of her party.  Its so fun!

Giggles.  My sweet girl has found her giggle again.  It was lost for the most part of last month, but its here again.  What JOY I feel as I find myself surrounded with the sounds of her laughter.  I find myself stopping to listen to it at all times of the day and into the night.  OH HOW I LOVE MY GIRL!

Bubbles.  Ash asked for bubbles for the first time in at least a year tonight and before you knew it I had filled the playroom with bubbles.  She lay on the floor and signed more and more as they floated down upon her.  It made my heart happy to see her play.  Her smile was so sweet as the bubbles landed on her nose.

Baby birds.  We now have our third nest of baby birds staying with us this spring.  I love them!  I get so attached and then my heart is so sad as they leave our home, but the short time they are with us brings me such happiness.  I love everything about them.  I love to watch the mommy and daddy preparing for them , taking care of them, and then teaching them to fly.  We have captured some sweet, sweet moments with our camera this spring.

Lists.  I'm serious.  I love lists.  I have a book full of them in front of me tonight.  Give me a good list and it can keep me busy for hours as I plan, organize, and re-write them over and over again and again.  The key to a great party is list making:)

Costumes.  The doorways of the dining room are filled with costumes tonight.  I'm so excited!  Looking forward to August 10th a little more every single day.

Baseball gear.  I love baseball because my son LOVES baseball.  Anything that can make him as happy as this game does has got to be a gift.  There are cleats, uniforms, bats, baseballs, and hats strewn about the house this week.  The team advanced to the Area playoffs after an amazing weekend of play and we are so, so happy for them.

Girl stuff.  Teenage girl stuff to be specific.  Shoes, clothes, perfumes, jewelry, hairbrushes, etc.  I love the mess of it all because I love the young girl it all belongs too.  I lay next to that young lady last night because she wasn't feeling well.  As I drew pictures on her back with my fingers my mind was flooded with memories of the little girl she used to be and the nights I used to spend doing that exact thing.  She's a beauty now.  All grown up and figuring out who she wants to be in this crazy world.  I'm so blessed to be surrounded by her.

Spring.  Everything about it makes me feel blessed.  The grass, the flowers, the fragrance, the temperatures, the freshly planted gardens.  I wake up in the morning and get happy all over again as I step out back and see the changes that have taken place overnight.

Family.  I love my family.  Dave, Blake, Allie, and Ash.  Surrounded by my biggest blessings in this life and I am so, so grateful for each and every one of them.

Music.  The relaxing sounds of Ash's favorite CD surround me tonight.  I love the instrumental Christmas Carols that play in her room all year round.   She's been drifting off to sleep to these sounds since we first met her in that NICU all those years ago.  The music brings rest to my soul as I listen to it play and I find great peace in knowing that it plays for her in our home tonight.

I could write forever about the blessings that surround me tonight.

 I could write forever about the fears that try to overwhelm me daily.

 I could write forever and ever about the Father uses my blessings to remind me that even in the midst of the hardest of circumstances He is taking care of me.

 I feel so incredibly blessed in this life.  To have been given our sweet Ashley.  To have known how it feels to truly love someone without condition.  To be witness to the miracle of her life...  Every...single...day...

God is good.  I am surrounded by His goodness.

My bug

I'm sitting here in my bed with this computer on my lap watching the smallest, truly barely more than microscopic, bug moving in circles in front of me.  I'm amazed at how something so small has captured my attention at this hour.  There is no way other than this exact circumstance with the light from the screen behind it that I would have ever seen such a small creature.  As I watch him( I have no idea why I just assume he is a him) move around the screen I've become overwhelmed by the belief that the God of all creation knows exactly where this tiny creature is tonight.  I even happen to believe that He knows not only where it is but also how it got here and what its purpose is.  Funny to me to think that God cares enough about His creation, even the smallest parts of it, to keep up with "my" bug tonight.

Maybe I'm crazy.  Maybe I'm confused about how God works.  Maybe I'm wrong.  I really don't know for sure, but in my world it makes sense to me to believe that God is involved in the details of my life.  Even the small ones.  It helps me feel safe in unsafe circumstances.  It helps me feel loved when my world is falling apart.  It helps me feel close when my heart is lonely as I begin to wonder if anyone, anywhere, has ever been in this place that I am in.

And...maybe I'm really, really far off base with my belief...but...its carrying me at this time.  I'll admit to all of you that I'm tired and I need to be carried from time to time.  My mind is tired, and my heart is heavy, and my being, the inside of who I am, the me part of me,  hurts so deeply when I slow down long enough to try and figure this mess out that I NEED to believe that God knows all about "my" little bug tonight and that if He knows all about him then surely He knows all about my sweet Ashley.  About her liver.  About her kidneys.  About her central line.  About her venous structure.  About her silence.  About her struggle.  About her.

And...

Since He is aware of my sweet Ashley then He must be aware of her mommy and her daddy and how confused we are and how unsure we feel and how lost we are when we stare into the face of the decisions we are too afraid to make. Too afraid to say out loud.  Too afraid to acknowledge.

So tonight I'm going to keep watching my bug and I'm going to keep believing that God knows all about him because I need to believe that.  I really do.  Knowing that He cares about even the smallest of His creation brings me peace tonight as I struggle to sleep.