Quick Update

Its been a tough week.  Ash spent most of her week with eyes swollen shut, leaking bili from her them, from her nose, and into her urine.  She stayed febrile most of the week.  There were days she slept for 20+ hours.  Its not been pretty.

Last night she started to perk up and by bed time was giggling.  She wanted to "go now".  As I tucked her into bed I promised if she felt good we would go tomorrow.  This morning when she heard me moving around in her bedroom she opened one eye and signed "car".  Yes, sweet girl I promised.  Today has been her best day all week.  Although she is far from feeling like herself she was better today.

The infection behind her right ear is not gone.  We have an early morning appointment with her ENT to decide how to proceed.  There is a swollen area of infection protruding from the bone about the size of quarter.  It eerily resembles the knot we saw come up two years ago this month.  I will not be at all surprised if they send us for another CT to determine if surgery should be performed sometime tomorrow.  I was very, very hopeful that treating the infection would clear it up, but I haven't seen many changes in her appearance or at the sight of the infection.

Ash's liver and kidneys have taken a huge hit this past week as she battled the infection in and behind her ear.  We have gone back to bilirubin levels in the mid teens and her eyes and skin tell that story.  She is beginning to smell toxic once again and she is clawing at her skin too.  The old transplant wound is opened up once again because of the clawing and I am back to cleaning and packing the incision.  

I just wanted to give a quick update.  We are grateful to see her smile return even if it is less common throughout the day.  I'll take a few grins and the occasional giggle over the miserable crying and whimpering she experience for much of last week.  Thank you so much for your concern, kind words, and prayers.  We should have more answers in the morning.

Treatment

This morning brings positive news our way.  The swelling in Ash's face and on the bone behind the ear has decreased over night and everyone involved believes the treatment is working.  So at this time we have agreed not to operate and are hoping the clear the infection without having to clean out the bone.

Yesterday they inserted a wick into the right ear and dropped antibiotic directly into the ear itself.  The wick expanded along the walls of the ear canal and our hope was that placing it directly into the source of the infection along with IV antibiotic that we would be able to avoid operating.  The ENT came in early this morning and believes it is working.  We are SO grateful he came up with this plan yesterday and saved us from having to send her into surgery.  It was worth a shot to hold off and give it a chance to work since the risks of putting Ash out for surgery are so very high at this point in her life.  I'm so glad we waited and re evaluated this morning.

The plan at this time is to allow us to bring Ash home and continue this course of treatment while keeping a close eye on the swelling.  If it continues to decrease then we should be out of the woods.  If not we will know that everything possible was attempted to spare her the operation and we will proceed with it here in Longview.

She is feeling much better this morning than she did yesterday.  We will begin another lengthy course of IV antibiotic and hope to keep the pseudomonas from spreading.

Ashley Kate is very, very complex medically.  There are good days and bad days.  Sometimes we have very little warning between the two.  Dave and I have become fairly seasoned by the rate at which things can change.  We try to remain as calm as we can and hold the panic to a minimum.  He is better than I am in many of these situations, but we roll with it and make the best decisions we possibly can for Ash.  There are days when it seems the situation is spinning out of control and we hold on to her as tightly as we can.  Raising a chronically ill child is not easy.  Knowing the prognosis is poor and the final outcome is not going to be an easy one can wear on your heart, but the joy and the blessing of being her parents far outweigh all of that.  I just wanted our friends to know, those who are still brave enough to have stuck around and still call themselves our friends...that we love yall.  Thank you for being here.  Thank You for loving our sweet Ashley.  Thank you for loving us.  Thank you for the support you gave to us this weekend.

Thank you all so much for your prayers.  The way that you love her is so precious to us.  We are blessed that you are still following.  So many of you have been here to this place with us daily for years and years.  There are no words that will ever convey the depth of our gratitude for your presence.

Ash should be home shortly and we plan on laying low today and loving on our baby.

Back to the Hospital

Ash was taken back into the hospital this afternoon.  We've been watching an infection brewing and building up in her ears all week long.  Its been a very, very long week that started with her blood infusion Monday evening.  She's not felt well since and went down hill really quickly.

We took Ash to see her doctor again yesterday morning and after noticing changes in her appearance we placed a call to his cell this afternoon and decided to take her to the ER.  A CT was done and our fear of mastitis was confirmed. If you've been with us long you will remember she had psuedomonas growing in the bone behind her right ear exactly two years ago this month and she was taken into emergency surgery.  We recognized the symptoms and feared we were back in that place once again.    Originally the plan was to rush her into surgery this afternoon, but after comparing CT scans it was decided to infuse antibiotic into the ear canal and let it sit there overnight.  A re evaluation will be done in the morning and a decision concerning whether or not to operate will be made then.

As always we are doing our best to balance the lives of all three of our kiddos in the midst of Ashley's chronic illness.  We are tag teaming and trying to keep their normal as normal as possible.  My teenagers are precious, precious young people who have grown up with the unpredictable events in Ashley Kate's health and they are once again handling it all very well.  We are truly blessed with three amazing kids.

I will update later tonight when we "tag" each other again and I settle in to the hospital for the night.  I needed to get this posted to update our family on the latest decisions concerning surgery.  Thank you all so very much for your prayers for Ash.

Happy 15th

Allie B,

Happy, happy birthday to you my beautiful girl!  Its so very hard for me to believe that you have grown up on us.  You are simply beautiful!  

I love you sweet girl.  I really do.  I know that there are days when we don't really see things the same way anymore and our opinions differ, but there has never been a day when I haven't loved you with every part of me. Its all part of growing up. You make me a better person.  Every single day since the day I first held you in my arms I have known that you were going to make me strive to be so much more than I ever thought I could be.  I remember thinking how incredibly blessed we were.  I couldn't stop staring at you.  I kept my eyes on you the entire first night and just stared at your tiny face.  I'll never forget those moments.  

Al, you make our life fun.  There is no other way to describe life with you.  We laugh daily at the things you say!  I love this part of you.  The fun, silly, and so ready to laugh until you cry parts of you.  You have your daddy's sense of humor and his love of the lighter moments in life.  Its the very best part of him and its become the very best part of you too.  Life is never dull when your home.  You love to laugh and not take life too seriously.  

I've watched you grow and mature so much over this last year.  There were hard days, broken hearts, and hard life lessons, but there were also amazing, fun, and exciting days too.  I'm so very, very proud of who you are.  You are fearless and I love that about you.  You love fully and laugh easily.  I really believe these are some of your best qualities. I'm so, so excited to see who you turn out to be and how God plans to use you in this life.  

Your baby sister in now the age that you were when she was born. I find that so unbelievable because I remember you at that age.  I can still see your sweet face and toothless grin.   I love watching the interaction between the two of you.  You wanted her so badly!  Daily you would ask us, "When can we buy another baby?"  I always thought that was so funny.  You wanted to be a big sister for so long.  You love her so, so much and I love the way you love her.  Your words to her are sweet and kind.  The way you snuggle up with her at night blesses my heart as I listen to you tell her goodnight.  Everyday you walk in the door after practice you never fail to greet her and ask her how her day was.  I love that!  Thank you for loving her so much.  

Allie B, I stand in amazement of you.  I'm so proud to be your mom.  I hope your day was blessed.  I pray that you will always know how much God loves you...how precious you are to His heart.  I pray that you will never forget that you are a valuable young lady who deserves only His best.   I pray that you know where your safe place is and that we will always be here ready to love on you, support you, and pray for you.  I pray that over this next year you will seek with your whole heart and desire with your whole self to be the person God wants for you to be.

Happy Birthday my beautiful Allison Brooke.  May your dreams come true, your goals be achieved, and your heart be treasured.  I love you, Mom

Long Night Ahead of Us

Ashley's CBC results today came back very abnormal.  Almost all numbers where at panic values and registering very, very low.  We had no indication this was taking place inside of her because she seems very, very normal, but after repeating the labs in hopes of error it was decided that a blood transfusion would be necessary in order to keep her safe.  Her H and H were critically low as were her WBC and RBC.

We stayed home through the afternoon while we waited for the blood to be brought to Longview and prepared for her rather than waiting it out in the ER.  Let me once again say how incredibly grateful I am for our team of local physicians who keep Ash's comfort in mind as they treat her.  I can't imagine how difficult it would have been to wait the 7 hours in the ER. I simply can't fathom how long that would have made the day.  Instead she played at home all afternoon and rested and waited.  She was admitted tonight at 10 and we started the blood at midnight.  We will be here most of tonight and should go home sometime around 5am to hopefully get some sleep.

I'm so proud of Ashley Kate.  She has grown and matured so, so much!  She knows where we are and has been so very brave about coming into the hospital.  You can see the recognition on her face and in her eyes as she remembers the sights and the sounds around here.  She was a little uneasy having to go into the treatment room to be weighed and it was so obvious that she remembered the many attempts at IVs and such and the pain endured there.  The monitors began beeping and she paused...looked at it...looked at us...and let us know she recalled the sound.  She's being so good with having her leads, blood pressure cuff, and O2 monitor on.  These are all triggers for her that in the past have caused fear and panic to well up inside of her as she realized that she was sick and back in the hospital.  Tonight she's just blown me away at how mature she's handling it all.  She is precious and sweet and so very brave.  Of course nothing being done to her tonight is causing her any pain, but usually just the memories of past admissions and the pain endured have caused her much struggle.  Tonight she's not afraid.

The best guess any of us have as to what is taking place is that her liver is sick.  Its struggling and causing that "traffic jam" we were taught about when she was an infant.  When the liver begins to struggle then the other organs and systems that depend on it to do its job adequately begin to struggle too.  I think the low blood counts are all related to her livers ability to function.

She actually looks and appears to feel pretty good.  I would have never guessed she would require intervention today based on her presentation.  She is happy and silly.  She's been giggly all day and continues to be tonight.

We feel so blessed to be taken of care in the manner that we always are while in patient here.  There are some very good people in our community who take such good care of Ash.  I am so very grateful to have them on our team.

So if all goes well and there are no complications we will be home sleeping in our own beds by early morning and will probably stay there for awhile.  I'm not expecting her to sleep much up here tonight.  She's playing and pretty wound up right now.

No need to worry

Update:  As soon as I hit publish the phone rang and there was a message left saying Ashley needed to be seen by her doctor this morning or taken to the ER.  Wow...I think the Father was working to prepare my heart this morning for what today had in store.  It doesn't get much more real than this in my life.  


"Therefore I say unto you, do not worry about your life, what you will eat or what you will drink: not about your body, what you will put on.  Is not life more than food and the body more than clothing?

Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your Heavenly Father feeds them.  Are you not of more value than they?

Which of you by worrying can add one cubit to his stature?

So why do you worry...Consider the lilies of the field how they grow, they neither toil nor spin; ...

Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you?  Oh ye of little faith.

Therefore do not worry...

For your Heavenly Father KNOWS that you need these things.

But seek first the kingdom of God and His righteousness, and all these things shall be added to you.

Therefore DO NOT WORRY ABOUT TOMORROW, for tomorrow will worry about its own things.  Sufficient for the day is its own troubles.

Matthew 6:25-34

This morning I read this passage of scripture and the words jumped off the pages and spoke directly to my heart.  I thought to myself how much I want to live, really live ,"put into action"  kind of live this passage in my life. I want so desperately to approach the day with this ingrained into my heart so that as the struggles of today arise I can rest assured KNOWING that my Heavenly Father has this under His control and there is no need for me to worry over any of it.  

Then...

Dave called with Ashley's lab results... and... my heart began to race and I found myself saying to him, "WE need to do something to stop this.  WE have to figure something out!"  I could feel the panic begin to rise inside of me.  

Wow...

how short is my memory?  I hung up the phone and read it again and then wondered aloud, "but how"?

How do I not worry when I see the decline?  When I see the numbers there in black in white telling us that there is trouble brewing and if it continues to brew then the eventual end will be devastating.  How do I do this exactly?  You know the whole "put into action" kind of life I so desperately want to live?  The whole no need to worry part of scripture that I clearly felt God using to speak to my heart this morning?  

I read it again.  I didn't find one word that told me it would be easy, but I did find several words that reassured me He has this too under HIS control.  He does.  

So even when the numbers cause tears to well up in my eyes and I can feel the tremble in my own voice and the insides of me feel sick I know that He fed the birds this morning and he dressed the fields and that Ashley Kate is so much more to Him than  those and He does indeed love her.  

So then I kept reading and I came across these words...

"Ask and it will be given to you, seek and you will find, knock and it will be opened to you.

For everyone who asks receives and he who seeks finds, and to him who knocks it will be opened.

What man is there among you who if his son asks for a piece of bread will give him a stone?

Or if he asks for a fish will give him a serpent.

If you then being evil, know how to give good gifts to your children, HOW MUCH MORE will your Father who is in heaven give good things to those who ask Him!

Matthew 6:7-11

I thought how very much I love my son.  How much I love my beautiful Allie.  My sweet Ashley.  There is nothing I would deny them if they needed it and I could provide.  Nothing.  I love them with every single part of my being.  How much more does my Heavenly Father love us?  So much so that Jesus died so that we could know Him!  That is a tremendous amount of love.

I'm not naive enough to not know how this works.  I know the things I ask need to be in accordance with His will.  I know that my heart has to be seeking His righteousness and not just what I desire.  See...thats the tricky part.  To be honest with you that is the scary part.  Because what if...what if what His will is for my sweet Ashley is different than what I want for her?  What if His will is not to sustain her liver?  What if His will is not to allow her to stay with us?  What if...what then?

I don't know the answer.  I truly don't.  I just know that I don't have to worry about her and I can ask Him for what I want for her.  He allows me that.  He does.  His word just told me so.  

So for today...I'm trying not get ahead of where we are...trying not to worry about her...and I'm asking for her numbers to improve.  

Today's troubles are enough for today and for today she is happy and home.  That IS enough for today.   It is.

I found peace in that today.  

Seriously...Valentine's Day?

I'm not one to be all anti holiday and such...but seriously...Valentines Day?  I just don't get it.   It seems so fake and completely made up to me.   Needless to say Dave did come home with a gift at lunch time:)  I had to laugh out loud when reading his card because he actually wrote how much he hated picking out a Valentines day card because they are all so sweet and mushy and thats really not what I'm in too.  Ha!  Wash, fold, and put away a load of laundry and your speaking my love language!

Valentine's Day is a day more for the teenage, young love population and I think thats all fine and dandy.  Except when your daughter's very first boyfriend decides he doesn't like to celebrate it and you watch her try and put on a brave face acting like she doesn't want to either:(  To be honest that made my heart sad for her.

Anyway, I've been thinking a lot about loving on my people this week and what that means.  I mean what does that look like?  I wanted to put it into action and actively love on them a little.  For Dave it looked like cleaning and organizing his closet for work.  He hates trying to figure out what goes with what to wear into the office.  For Blake it looked like lunch on me today and putting some gas into his tank.  For Allie it was doing the dishes and cleaning her room for her so when she came in from school she didn't have any chores to do and got to take a nap instead.  Let that girl get a little extra sleep and she is the happiest kid around!  For my sweet Ash it was super easy.  A little Dumbo on Netflix, Bambi on the Ipad and snuggling in next to her on the couch as she "told" me all about her favorite parts was all it took.  Give her my full attention and her little hands "talk and talk and talk".

She's the sweetest thing.  I love the way she loves on me throughout our day.  Her mouth may never speak the words "I love you" and she may never choose to sign it either, but her eyes, those sweet, sparkly eyes light up when she pats for me to sit down next to her and then the way she looks at me tells me how very much she loves me.  Every once in a while she will wrap her arms around my neck and squeeze me tight and I know in those moments how very much she loves me.  I can't explain how very good it feels to be loved by her.  I only asked the Father for one thing when she was born.  I asked that she be able to give and receive love.  Its all that really mattered to this mommy's heart and He has been so GRACIOUS with us.  She LOVES us well and KNOWS how well she is loved.  I am so thankful for that answered prayer.  So very thankful.

Things haven't changed too much around here.  Ash is still on an IV antibiotic and this morning she woke up with a terrible amount of 3rd spacing.  She can't even open her right eye!  I had planned on letting her ride her bike to the baseball game this afternoon, but I'm not so sure I can explain her appearance to anyone so I'm undecided about whether or not we will go.  She feels fine, but looks awful!  Blake's not playing yet because he has a playoff game Friday night for basketball so we were going just to support the team.  If they lose then he will be released from basketball and allowed to play baseball in Saturday's game.  Speaking of Blake he's still sickly and the doctor told him this morning he would remain that way until he slowed down and allowed his body to rest.  Well...we all know that's not going to happen based on his baseball schedule until around August.  I guess he will be battling this junk until then.  He and I have both had it since early December and just can't shake it.  This morning we agreed that we are just sick of being sick!  Thankfully we are the only two that currently have it in the house.  Ash has been the least affected by it and Dave and Allie have had a couple of rounds each.  I'm beginning to think mine may have switched into a pneumonia mode because my lungs are awful sounding!

Anyway, that's whats been going on.  I'm so sorry for the lack of posts.  In all honesty I just don't feel good and I'm pretty worn down.  Its beginning to take a toll on me and even though I think of writing often I just don't put the words down.  I apologize for that.  By the time evening comes around I'm so ready to rest I keep putting if off.

So, let me just say if you like to celebrate Valentine's Day then I hope yours is blessed and that you feel loved by all those around you today.  Love you guys, Trish

Since the Last Time...

Its been quite a few days since the last time we talked.  In that time there have been some really good days and some really hard days.  I'd like to say that everything has been great, but the truth is that it just has not been.

Ashley Kate's line infection has proven to be the longest and most stubborn we've had up to this point.  She has had several days of break through fevers that left her motion less and miserable.  She can run a continuous fever for more than 48 hours without breaking and during those days it gets so hard.  I've spent a lot of time crying last week.  I think the exhaustion of caring for Ash when she's so miserable in combination with just the physical care I have to give to her on a daily basis left me depleted.  It would seem though that just when I thought the fevers would never end the she would wake up and have a good day full of smiles and giggles.  Just in time for me to recoup and get a grip on my own emotion.  The best way to describe this time that we've been going through is that its had its ups and downs.

On top of the cares that are necessary  there is the constant worry of  how we will ever clear this infection and if we can't then what does that mean for Ash and the future.

I've been quiet simply because I don't know what to share.  I stare at the screen and want to write about all the good, happy, and blessed moments, but then it feels so fake because there are a lot of not so good, unhappy, and frightening moments mixed in.  My heart is so heavy some days just wondering where this is all headed and how will she ever survive it.  It hurts to think too much and so then I do my best to concentrate on the blessings.

We finally switched antibiotic coverage and within an hour of the first infusion we had our first break in her fever for days.  I was so relieved to see her smile and play and to feel her cool skin.  I am hopeful that this will be the key to getting clear blood cultures.  We've been working on this current infection for 10 weeks now.  Constant antibiotic coverage that is necessary but also damaging to her liver and kidneys.  We really need to get rid of this infection.

Today was a good day.  Ash was happy and feeling good.  She laughed so much it was contagious as the sounds filtered from room to room.  I found myself sitting still and concentrating on the sounds of her joy filled laughter.  I so needed that today.  I am so grateful.

I wanted to take a moment just to give an update on our sweet girl.  I know its been too long, but I was hoping to have good news to share.  I just kept waiting and waiting for things to turn around for good.  I'm hopeful that we are there.  She has been fever free for 3 days now.  I'm taking that as a good sign and jumping at the chance to update on a day that I'm not emotionally drained.

Thank you so very much for your prayers and your concern.  You will surely never know how very much you words continue to encourage us.