Easter Morning

Easter Morning 2013

Just as the storm blew in fast and furious this morning with a rush of wind and pouring rain, I feel as though this current struggle has done the same.  I hadn't seen or heard a weather report in days, and so as I sat here listening to the labored breathing of my sweet Ash I was taken by surprise when the sky opened up.  I listened to the sounds of the winds howling and the rain pouring outside my door and realized how descriptive this was of our last week.  How surprised I have been by the mighty rush of events and the decline in her little body.  The main difference in the two scenarios being this...I think the storm outside my door has passed, but the storm inside of her body is just winding up.  

This morning our sweet girl asked to moved out of her bedroom and into the family room.  I realized yesterday afternoon that there would be no sweet pics of her smiling face, long brown hair, and shining eyes snapped today.  There would be no silly giggling at the antics of her big brother and sister as they helped to bring a smile across her face as I attempted to capture it so we could hang on to it forever.  I realized there would be no white dress, no hair bow, and no tradition.  So as I finished taking pictures of Blake and Allie this morning I did snap this one of sweet Ashley Kate, and even in the harsh reality of her situation I still find her to be breathtakingly beautiful.  So precious.  So sweet.  So frail.


  We had a long night of getting up and down, taking turns in the spare bed in her room, and caring for Ash.  She was pretty miserable and  unable to sleep for most of the night.  Sometime in the middle of the night she began to cry.  I hadn't heard anything more than moaning or grunting for the entire week.  The sounds of her crying broke my heart.  She is so very sick.

As Dave and I attempt to talk about all that she is going through we are searching for answers to unbearable questions.  It feels so isolating and so confusing as we try to help our girl and pull her out of this current struggle.  How,how, how could this have happened so quickly?  We  no longer believe she is struggling with the line infection.  We had hoped thats what this would all be about, but it is proving to be much, much more.  In brutal moments of honesty we are admitting that we think her liver may be  failing and her spleen is going down along with it.  We don't know any of that for sure, but it is looking more and more as if she may not come out of this the same as she was when she went into it.  Her lab work does not indicate liver failure in the enzyme function tests, but the drastic rise in her bilirubin, the swelling of her abdomen, and the tenderness of it lead us believe this very well may be what is happening.  I say her spleen as well due to the massive amounts of blood she is needing, tenderness, swelling, and discomfort on her left side.  Her breathing has been short and shallow for days, very guarded, and initially we thought perhaps she would end up in respiratory distress and was becoming septic from the line infection.  She was attached to monitors for 24 hours at the hospital with no sign of respiratory struggle.  The only thing not textbook was her temperature which sat at 100 the entire time we were there.  So we are left to believe that her current method of breathing is because of pain and discomfort from the abdominal area.  I desperately hope that we are wrong and that this is not the case, but all our research is leading us believe it may be so.

What is the plan?  I wish I knew.  My hope is to make it through today.  If things change we will call our doctor and then go to the ER, but in all honesty there is nothing they can do up there to help.  We've been.  They don't know how to help her.  I plan on taking her in early tomorrow morning and perhaps seeing if we can do an ultrasound of her abdomen, perhaps look at the spleen.  From there I don't know what will be done or what decisions will be made.

We will also be drawing more lab in the morning.  Hopefully she will have maintained a safe level of hemoglobin and won't require another transfusion.

This is what Easter Sunday looks like at our house this year.  The hope I'm finding is in the fact that because of His resurrection, Ashley Kate will one day have a body that is not broken and she will be just as He is.  One day she will run, she will not hurt, and her tears will no longer fall.

I'll leave you with this image of my teenagers.  Smiles on their faces, but burdens in their hearts.  Its an uneasy, frightening time for them right now as they hold on to the hope that she will be fine because just as Allison said to me, "She always is Mom, she always gets well."  Oh, how I hope your are right!

Home This Morning

Ash came home early this morning and has been resting in her own bed.  I don't see  any improvement in the way she feels since receiving the blood.  She's not feeling very well, but I guess theres not much anyone can do about it.  I'm thankful for the moments when her room becomes quiet and peek in to see she's finally fallen asleep.  If she's sleeping, she's not as aware of how bad she's feeling.

We plan on keeping things low key and as quiet as possible around the house this holiday weekend.  I'm thankful my other children are older now and don't expect much celebration anymore.  Its more than enough to acknowledge what Christ did for each one of us.  I may try and make a nice lunch tomorrow afternoon for the family, but then again I may not.  My hearts not really into it.  Dave and the kids may sneak out to services in the morning or we may just watch online as a family.  I'm not sure just yet.

My heart is sad knowing our annual Easter picture of the kids just won't happen though.  I can't imagine snapping pics of Ash the way she looks right now.  I took one pic of her sitting up the other day and the image on the screen stole the breath right out of my chest.  Her size and color are so, so shocking.  I see her everyday, but something must protect me from the reality of how she really looks because of being with her so much.  Yesterday as we wheeled her into the hospital the look of shock, concern, and confusion on every face we passed in the halls stung me so deeply.  People just don't know what she's dealing with and they don't understand why she looks the way she does.  I know they mean no harm, but it makes it all the more real when I see the look in a strangers eye.

Things will turn around soon.  They have to.  I'm believing that today.

Where do I begin?

Ashley had a pretty uneventful night last night.  She and her daddy went on a long drive and once they got home she was ready for bed.  By the time I made it back from the ball game she was fast asleep and actually slept better than she had for the last few nights.

This morning she was awake by 7:30 and asking to be moved into the family room.  I thought we were going to be looking at a good day.  The weather was supposed to be beautiful and I actually thought she might enjoy spending some time outdoors this afternoon.  We drew her blood work and thought it would be a good chance for her to go for a short ride while we took it to the hospital, ran to the bank, and few other errands.  Once we got her in the car we noticed how different she looked since yesterday.  Something about her just wasn't ok.  She was pretty miserable.  We chose to skip all the errands and just drop off the blood.  We live about 2 miles from the hospital.  We didn't make it 5 blocks before the phone was ringing.  It was the lab.

Ashley's hemoglobin had dropped to 4.3.  36 hours earlier it had been 13.6.  Drastic change!

Calls were being made back and forth between the hospital, the doctor, and the blood bank.  We brought Ash home and laid her back in her bed while the details were being worked out.  In less than 2 hours we had her admitted to receive two units of blood back to back.  Ashley has never required two units of blood outside of surgery.  Its never happened.

She's looking pretty rough today.  Her vitals are all strong.  Its so weird.  Perfect blood pressure which I find unbelievable with such a low volume of blood on board.  Oxygen sats at 97%.  Respirations normal.  Heart rate good.  Her temperature is a little elevated, but nothing serious...but...its the WAY she looks that has us so concerned.  Her bilirubin is at an all time high.  Her skin is glowing.  When I say that I mean it.  Her body is so swollen.  Her weight is up by 8lbs.  She hurts.  She's ok as long as you don't touch her or try and move her.  She's been awake and alert.  Very opinionated.  Fussy.

Something inside of her is wrong, but we don't know what it is.  Is it simply explained by using the words "disease progression"?  I just don't know.  Where is this all heading?  Will she rebound?  Was all of this response triggered by the line infection? The drugs being used to treat it?  The bug thats invaded her blood stream?  Its it the fact that her liver just can't keep up anymore with all that its being asked to metabolize?  There are a thousand questions and NO answers.

The biggest question I have is this..."What do we do?  What are we supposed to do?"  Its a question with NO easy answers.

Where is all of her blood going?  What is happening to it?  Why is it being used up so quickly?

Each of the transfusions take between 3-4 hours.  You have to wait 6 hours between each unit. Then you wait an hour or two for observation.  Sometime early tomorrow morning we will draw another CBC and decide if she needs more blood.  Everyone assumes she will be discharged home tomorrow to continue treatment for this infection and we will keep monitoring her vitals and her blood work while we wait to see what her body will do.

We honestly do not know if or when or how much her liver will recover from whatever is happening inside of her right now.

We are tired, unsure, a little nervous about the immediate future and what it will hold for our daughter, and so much more that I don't even know how to write about.  Your prayers are so very appreciated right now.  Even after all these years I have not grown accustomed to the rate at which her status can change.  Things go from good to bad over night.  I find it so very hard to believe that just 12 days ago she was playing at the baseball game while her big brother high fived  her tiny hand through the fence as he was on deck.  Precious memory...she's got a lot of living left to do...and lot more ball games to cheer at.

Small Victories

Late yesterday afternoon Ashley's antibiotics were changed and I believe it was a good thing.  She's had two doses now and I'm beginning to see small victories take place in her condition.  I realize we are a long way from normal or from being well, but to see the smallest of changes in her comfort level and overall condition have been such an encouragement.

Victory 1.  She sat up this morning.

 I can't even describe how HUGE this is for her this week.  Its been 7 days since she was able to sit up for more than a minute or two at a time.  During those minutes she was so miserable and she would do everything possible to lay right back down.  This morning I sat her up on her bed and she stayed there for the full 45 minute infusion of her anti biotic without complaint.  She's worn out from it now, but she was content to sit there while I rubbed her back and braided her hair.

Victory 2.  Her eyes are actually open.

I can see her eyes today.  Its been days and days since I have actually seen her full eyes.  She had massive pockets of fluid in her eyelids that caused them to bulge and swell and she could only open them in the smallest of slits.  She would actually use her fingers to lift them up in order to see.

She is still extremely swollen in her face, lips, and neck, but her eyes are starting to change.  Her body remains heavy and full of excess fluid, but its getting better and a little more comfortable for her.

Victory 3.  She's interested in being awake.

Ashley has had no interest in her surroundings or much of anything for several days.  This morning she is using her Ipad and watching movies in her bedroom.  She still does not want out of her bed, but she's not just lying there moaning like she had been.  She is signing this morning and actually has an opinion about things.  She's choosing her own movies and letting me know what she wants and doesn't want.  I've never been happier to see her so opinionated!

There is going to be a lot of information in this post so if you want to this might be a good stopping point.  I'm including it all for several reasons, but it may not interest many of you.

She has a long way to go, but I'm feeling a little more encouraged this morning.  After a late evening discussion with her doctor we all opted to leave her home another night and see how she looked this morning before admitting her.  He told Dave on the phone last night there was really nothing more we would do for her if she were taken to the hospital.

 At this time her care would be the same there as what we were doing at home except for having her hooked up to the monitors to track heart rate, respirations, oxygen sats, and blood pressure.  I kept track here of her oxygen sats, counted respiration, checked temp and blood pressure all from inside her bedroom.  Although I was a little nervous as the evening got closer I'm really thankful we chose to stay home after seeing her this morning.

Her temperature remains normal.  Her oxygen sats are in the mid 90's which is perfectly acceptable.  Her heart rate is higher than normal, but not extremely high like it had been the first few days of the infection.  Her respirations are still too high and that is my mine concern because we don't want her to get too tired to breathe, but we do have oxygen here if she were to need a little assistance.  She is in no danger of needing to be intubated or anything to that extreme.  Overall her vitals are very stable.

Yesterday afternoons lab work was a mess.  Thats the best description I can give.  Her liver is hurting.  I've only one time ever seen her bilirubin climb to such levels, but the odd thing is that her liver enzymes showed much improvement.  Her kidneys have taken a hit this infection and with each new infection we see more and more damage to them.  Her CBC was much more stable than it has been the last 6 weeks so she won't be requiring a blood transfusion this week unless something drastic changes.  Her platelet count was down to a critical level, but its hard to measure Ash' platelets due to many things.  They always do a manual count of them to determine the most accurate count and yesterday she was only registering a number around 38.  It may or may not be accurate and we will check again tomorrow morning to decide if we will infuse some or not.  She is dry inter vascularly and we are running IV fluids, but we do that for her daily anyway so I'm not expecting a big change there until we can get the infection under control.  When she has a major infection the walls of her vessels become weak and the fluid leaks out of them and into the tissue spaces which causes the extreme swelling of her body.  She receives a liter of half normal saline daily through her CVC when everything is normal.

We are in constant communication with her doctor and his office.  He is monitoring her status through lab values, and speaks to both Dave and I throughout the day.  I could NEVER say enough about how amazing he is with us in our situation with Ashley Kate.  We are so, so, so grateful for his care of Ash.  I know without a doubt that God placed him on call the night she was born knowing we would need him in throughout her life.  That is how involved our God is in her life.  He knew what today would like for her and for us, and He know we would need a physician just like Dr. C.

Ash is grumpy and uncomfortable, but those are actually good signs.  I would prefer that over her being so ill she is distant and uninterested in her surroundings.  Her complaints tell me she wants things to change and she wants to feel better.  All good things in this situation.

Her newest line cultures came back positive sometime during the night.  I don't even remember what time the phone rang to inform us.  We weren't really expecting anything different though.

She has already asked to go for a drive this morning.  We may take her on the lunch hour.  Dave will remain home with her this evening.  I'm planning to travel to Blake's game with a friend.  We are trying to keep things as normal as we possibly can for the older kids.  They are both aware she is very sick and they know she hasn't been this sick in a long time.  I simply don't know how they manage with the weight of the burden they carry on a daily basis.  I know they are concerned because I hear it in the sweetness of their voices as they talk to her each evening.  They love her so, so much!  She has managed some  very weak high fives for Blake the last couple of days, but it has taken every bit of energy she has to respond to his request.  Allie has spent some time cuddling with her in the bed and talking to her while she lays there with her eyes closed.

We still have not seen her smile or heard her laugh for 9 days now.  I will know things are going to be ok, really ok, when those things return to her.  I miss it more than my words could ever describe.

Comfort and Quality

There are no words...it is simply put...surreal...when conversations concerning your almost 8 year old turn to quality of life and comfort care.

Don't mistake my first words...we do NOT think this infection is going to be the end.  I suppose that it technically could end her life, but we don't expect it to.

We do however spend time discussing comfort care and quality of life issues with our physicians when trying to figure out how to get her through this infection, and the next, and the next.  Its the nature of the beast when you have a child who is living on (for lack of better words) "borrowed time".  It sucks.  It sends my heart racing.  My mind spinning.  Everyone knows the overall prognosis is "grim" and "poor" to quote the latest written words scrawled on her medical update.  As many times as I've read those words they never seem to go down any easier.

Today, our goal is to keep Ashley comfortable.  We are focusing our decisions based on the ultimate wish for her to be most comfortable, less scared, but still safe.  I've been on and off the phone all day dealing with the circumstances we find ourselves in with her status and trying to do my best to make the most informed decisions possible.  Currently it has been decided, at least for the next 2 hours or so, to remain here at home pending lab results and to change up the course of antibiotic treatment in an attempt to spare her liver and kidneys more damage.  All of this is a temporary plan with full knowledge that her labs may send us in a very different direction.  We may or may not shoot chest x-rays this evening or early tomorrow morning. We may or may not begin IV lasix to pull some fluid off of her.  We may or may not admit her to the hospital tonight or tomorrow.  We may or may not be giving blood products by night fall.  Its all being decided on a moment by moment basis, but since her respiratory status is stable she is able to remain here in our home until further decisions are made.  The pros and cons of admitting her have been thoroughly discussed and for now there is nothing more that would be done if she were inpatient than what we are currently doing for her here at home.  At this time I'm comfortable with that decision.  We are all in agreement.

Still, to see her so sick is taking a toll on me emotionally.  I think this is the point in which we have been "warned" was coming as far as the infections getting stronger and stronger and harder and harder to beat.  That is a scary thought.  Its a scary place to sit.

I've said it many times before and I'm going to say it again...how I wish real life would stop when this part of our life spins out of control.  The balance of work, parenting, and responsibility that normally is just "life" gets so, so difficult when Ashley Kate becomes so fragile.  All I want to do is concentrate on getting her better, and yet my heart and my mind are pulled in many, many directions with the children and trying to be there for each and every one of them when they need us.

I'd like to scream how horribly unfair this is and how she simply doesn't deserve any of it, but as I am often reminded by a few, there are thousands of precious children who suffer with illness and disease in this world and its not fair for any of them so why do I think Ashley Kate should be any different.  My best answer is this...because she's mine and its my job to try and make it better for her.  I can't lie about my desire for her to be whole and healthy.  Not because she's special, but because God made her mine and a mother's heart desires for her child to live a long, full, pain free life.  Its the best I've got.  I grieve over the losses, the illnesses, and suffering of many...but its so close to home with Ash because she's in my home and in my care.  So let me say it again...it sucks!

I'm just waiting for her to open her eyes, let out a giggle, and let me know all this worry and non sense has been about nothing.  Come on, sweet girl, lets get to that point.

No improvement

Its been such a hard week.

 We haven't seen Ashley Kate bounce back like she always seems to do, and in all honestly we haven't seen any improvement in her condition since the fevers and vomiting ceased.  She remains in her bed unwilling to move.  She's been there for days and days now.  I haven't seen her smile or heard her laugh since a week ago today.  Her body is swollen so large it causes her breathing to be labored and her eyes are almost sealed shut.  The eyelids are so heavy with fluid she can't keep them open.  She's had some really rough nights.  Night before last we didn't sleep at all because of how bad she was feeling.  She moaned and grunted with every single breath.  I was really afraid for her.  Last night was a little better, but not by much.  I'm afraid to be away from her and so I sit and wait for someone to make it home before I take a shower or get dressed every day.  Its a weird feeling I have inside of me.  I just know we need to stay to close to her.

Clinically there isn't anything else that can be done to help her through this infection.  She is being treated with  some very strong IV antibiotics.  Her respiratory status is stable and therefore it needs no intervention.  Her O2 sats are in the mid 90's and although her respirations sound so heavy they aren't elevated and she seems to be getting adequate oxygen to her body so there is no need for support at this time.  Her heart rate is down to a more normal range and she is no longer running any fever or vomiting.  There isn't anything that can be done to pull the swelling out of her body and that seems to be the main side effect this infection is having on her... severe swelling in her tissues.  Her body is heavy, heavy, heavy and she can't tolerate sitting up for more than just a little while at a time.

Her only request each day is to drive.  She hears me in her room and slips one hand out from under her blankets to sign "car".  She wants to be in the car.  We have taken her out each night for a drive and tonight we will take her again.  I promised her we would take her as soon as her daddy comes home.  She continues to ask every single time I'm in there and if thats what makes her happy today then thats what I'm going to do.  Blake is pitching in the game tonight and we have decided to drive Ash to the game and then remain in the car while she rests in the back. We removed the seats and her wheel chair and made a soft bed in the back for her.   I'm just not comfortable having someone else sit with her at this time.  I think we need to stay close to her.  My mom is coming to help early next week which will allow me to get some sleep, take more timely showers, and leave the house from time to time to run errands and attend Blake's games.  A week ago if you had told me Ash would be in this condition I would have seriously doubted you, but this is where we are.  I haven't seen a line infection take a toll on her body this severely in a very long time.

She's pretty miserable and other than the occasional dose of Tylenol and her antibiotic nothing can be done for her.  She's got to fight her way back from this infection and until her body decides to overcome it we are in for some long and miserable days.  I can feel the emotional toll its taking on me.  I barely had two words to say all day yesterday.  I felt awful for not being able to shake it off, but my worry and concern for her was overwhelming.  I simply hate to see her this way.  I know she's hurting.  She's not smiling.  Not playing.  Not laughing.  She's a shell of who she was a week ago.

Stupid infections!  Thats about the nicest thing I can say about them.

Thank you for your prayers.  

They Just Keep Coming

We are seeing Ashley Kate begin to struggle a little more with each new infection.  They are now coming on quicker, harder, and proving to be stronger all the time.  The length of time we get between line infections is shorter and shorter.  Maybe 2-3 weeks clear if we are lucky.

My heart is so, so heavy.  I've watched her go from happy, giggly, and care free to absolutely miserable over this past week.  They infections come on so fast.  She was simply delightful and feeling so good last Tuesday when I put her to bed,  but by Wednesday morning everything about her was different. She spent the next 3 days in her bed.  I couldn't get her up at all.  She didn't want to be touched, or held, or moved.  She shook her head, "no, no, no" every time I needed to change her or give meds.  The fevers were high, her heart rate high, and her respiration's high.  Thankfully her oxygen saturation's were stable.  We started meds mid morning on Friday and her fevers and vomiting didn't stop until last night.  Today she has been fever free, but she's aching all over.  She can't stand for us to touch her or transfer her.  She is so miserable.  Her body is swollen and heavy I think she just hurts.  Its taking longer than we had hoped to see results.

Last night she asked to go driving and as we carried her to the car she complained about being touched.  Once she settled into her seat she was content to be in the car.  I drove and drove that car each time turning in the direction she requested.  Dave and Allie started out with us on the drive, but we eventually took them home and since she wasn't ready to be home yet I kept on driving the neighborhoods with her.  We listened to music and just kept on going.  She pulled her blankets up under her chin and stared out the window as the world went by.  We came home sometime after 11.  Its so hard to deny her requests when she's so, so sick.  I didn't want to look back someday and tell myself that I wished I had just taken her on the drive when she wanted to go.

At some point during our drive I began to cry.  Its been a little while since I've broken down and cried over where this is all heading.  I haven't allowed myself to really look clearly at our situation with Ash for several months now.  I just keep getting up every day and living life.  If I didn't force myself to keep going then I know I would curl up into a ball and never leave the house again.  I have to make myself keep on keeping on.  I don't talk much about this to anyone anymore and I rarely allow myself to write about it either...the truth...my heart is breaking.  It is.  I see that her body is so, so broken and its not going to get better.  Things are not going to change and she will never be well.  That is the truth, and the truth hurts.  It hurts so deeply that my tears flow so heavy I feel as though I'm being washed away by them.  I feel so helpless to change any of this.  It is simply an impossible situation.  The weight of the burden on my heart is so heavy I feel the physical presence of it and it is crushing.  I know that one day she will be gone.  Her body will wear out and she will be too tired to keep doing this.  I feel this so much more when she's battling these infections.  As long as she's laughing I can keep on pretending this is not the case, but the truth is this is still the case.  Her smiles and laughter don't change anything...they just allow  us not to dwell on it.

I've rarely shared the beginning of Ashley Kate's story.  Seriously, so few people know the whole story and everything that God orchestrated in our lives and hers so that we would become a family.  Last week I opened up and it all came spilling out.  I was reminded by my own retelling of it how intimately God knows and loves Ash.  I felt His presence come over me and I remembered how real He was in those moments and those days.  To feel Him so close to know that it is truly Him there with you is a feeling I can't say I have felt often in my life, but in those early days I knew without a doubt that it was Him.  It was by Him and Him alone that we became her parents.  I will never doubt that.

 Maybe the day will come that I will share her story.  The whole story.  It is beautiful.  I had always hoped that she would tell it in her own time since it is her story and not mine, but that day may never come.  I at least need to find the words to write it down even if I never choose to make it public.  Blake and Allie deserve to know it all and I think they are to an age where they could begin to understand the harder parts of it now.

Anyway, I wanted to update everyone on how she was doing.  Its not the update I had hoped to report, but she is resting peacefully tonight in her own bed.  I'm grateful for that.  She's not feeling well, but she is feeling safe.  This med schedule is a little easier than our last one.  We are only up once during the night and so we are getting to sleep a little bit more than we have in the last 3 months.  We give meds at 4am, 10 am, 12pm, and 8pm.  They are stored at room temperature and that allows me to sleep until 3:45ish and go back to bed by 5am.  I'm so thankful for that!  Our last schedule was brutal and I only slept for 2 uninterrupted hours a night for almost 12 weeks.  Ugh!

  I'm so hopeful we will clear this infection quicker than the last.  So hopeful.  

First Dose

The first dose of antibiotic if finally running!  It is so very hard to watch her be sick all the while knowing without a doubt its a line infection, but still having to wait for the machine to beep positive in the lab.  Then to wait all night long for the pharmacy to open this morning is brutal, but all that is behind us now, and we have started treating.  There are no id's or sensitivities yet, but we are hitting her with some big gun, broad spectrums, and hoping for quick results.

She was free of the round the clock IV med schedule for 2 weeks.  Now we are back at it.  I hate it for her. Hate it for her struggling liver.  Hate it for those fragile kidneys.

If we are lucky by this evening or tomorrow morning she will perk up, stop the vomiting, and feel a little more like herself.  Thankfully the fevers broke last night and she seems to have remained free of them this morning.

She's lying really still in her bed, covered in soft blankets, and watching Bambi.  She's been asking to go in the car since her eyes opened in the early morning hours, but I'm not sure just yet.  I keep telling her we will wait and see.

Another Line Infection

Ashley woke up with fevers yesterday morning after having a pretty good 5 or 6 days.  She spent most of yesterday lying very still and resting.  Last night she began vomiting along with the fevers and we know from past experience to assume its another line infection.  She rested very little through the night due to the vomiting and feeling so awful.  This morning she remains febrile and not very active.  We acquired orders for line cultures and have already dropped them off at the lab.  Unfortunately, we won't start any coverage until we have the positive cultures and so she will remain fairly miserable today.  I hate days like this for her.  Usually once she receives a few doses of antibiotic the fevers cease and she perks up a little.  I'm hoping by tomorrow evening she might start feeling a little bit better.

The line infection issue is something we've battled for the entire length of time she's had this particular placement.  It was infected upon placement 2 years ago this past December and we continue to due the best we can and treat through the infections.  The particular bug that has colonized the inside of her catheter is very, very difficult to get rid of.  She's been off antibiotic for just 2 weeks after a 12 week course on them.  Amazingly so she has shown to have very little resistant infections to this point.  It may take a while to clear them, but they have all eventually cleared enough to give her quality of life minus the first few days of the flair ups.

Today she is pretty uncomfortable.  She refuses to get out of bed and has requested not to be touched.  I'm trying to honor her request other than having to do what absolutely has to be done.  She's dosing on and off and whimpering while she rests.

I'm sure it gets tiring to read about each and every infection and the ups and downs of her cares, but its important for us to document and have this record to refer back to.  That is why I continue writing about them although they have pretty much become the norm.  I also want those of you who are praying for her each day to be aware when something new arises so that your prayers may be specific for her.  Thank you so very much for your prayers.  Its hard to explain how encouraging it is to receive a message that simply states, "We are praying for you tonight.".  This morning when I opened my email after the long night it soothed my soul to read those words.  As I lay awake whispering prayers for my sweet Ash to find rest someone was whispering prayers for strength for all of us.  I breathed deeply as I read those words and allowed them to minister to me.  What a blessing.  Thank you so very much.

By the grace of God she should begin treatment soon and start feeling better too.

My heart gets sad...

... every time I see her lab work.

I've stopped hoping for good news and just gotten to the point where I'm accepting of the bad news.

Its even to the place that the bad news doesn't even cause me to wince as much as it once did because I'm expecting things not to look good anymore.

So...my heart gets sad...

Until she opens her yellowed eyes, and stretches that broken body as she wakes, and then giggles so loudly and so unrestrained at the mere idea that shes gets to play for another day.  She remembers that I promised her at bedtime that tomorrow we would go to Blake's ball game and the excitement about the drive causes joy to spill forth as she signs "car, drive, go now".  I smile and allow the soothing presence of that smile to seep into my sad heart because just as her daddy said to me last night as she giggled and giggled until we were all short of breath,

"There may be a lot about this life that she doesn't understand, but she understands how to live it so much more than most of us."

Yes, she does.


This afternoon she and I will load up in the car and make the two hour drive to Blake's game.  I don't dread the drive because I know what joy it will bring to her.  She's been looking forward to going in the car for days and the longer the drive the better for her.

 I expect tomorrow we will be admitted to the hospital once again for another blood transfusion.  Like clockwork every 13 or 14 days shes needing more blood.  Her body no longer making an adequate supply on its own.  No one even guesses as to why.  We've all just accepted that this is what it is.  Her liver is sickly and declining in function more and more with each set of labs that we collect.

 My sweet girl...she doesn't even act as though anything is wrong...she's so unaware that life could be any different...I'm grateful for that.  More and more as the years pass I'm grateful that she doesn't know to long for the things she doesn't have or can't do.

We smiled so wide listening to her giggles at the ball park last weekend as the trail of little girls ran back and forth right in front of her.  She loved it each time they would pass by.  Her laughter filling our space and easing the ache in our heart knowing she would never join them.  It doesn't matter to her one little bit.  Her joy came from watching the chase and listening to their sweet little voices chatter around her.  She loved watching and was content to find her joy in the sounds of theirs.

My heart gets sad...but then...it finds joy again from the sound of hers.  I learned that lesson from her last Saturday.  She continues to teach us how to live this life...and I'm grateful for the instruction.

How do I know...

...that its spring time in Texas?

The buds on the trees...the daffodils in bloom around my mailbox...the dusting of pollen across everything that dares to sit still...the sprinkling of green grass beginning to show across the yard...the break from school that allowed me to have my teenagers for a full 7 days in a row... or perhaps the daily request of my sweet Ashley to ride her bicycle and go swimming...NOPE...( I mean I guess all those things give me a hint, but thats not the biggest reason)...

My nest is back!

Each and every year that we have lived in this house somehow a mama bird makes her way into my garage and builds her little nest upon my garage door opener...this afternoon Dave announced that we were once again going to have "our baby birds".  Oh the JOY!!! My heart seriously lept in my chest and a smile spread across my face.  I LOVE my baby birds.  I love the whole event.  I love that I get to listen to their first little peeps and that I get to watch their mama take such good care of them.  I love, love, love them.  I get so attached to them while they stay with us.

 Then..I cry.

 No lie.  The day I see them leave the nest and hop outside the safety of it while their mama teaches them to fly breaks my heart.  I usually get a few more days with them at the most as I watch them make their way in the world via our back yard and then they leave.  My heart worries about them which cracks Dave and the kids up.  They laugh at me and don't get it, but I don't care.  For some reason those baby birds steal my heart and I can't help but miss them when they leave.

Baby finches, robins, and cardinals have all come to be born here the last few years.  I can still see my chubby  little cardinals with their mess of hair and fluff on top their heads from last spring.  I seriously LOVE them!  They were so ugly they were adorable!  The cutest little guys.

So this morning I'm smiling wide just knowing that in a few weeks my baby birds will be here again.  Oh, how I love those tiny babies!

Last spring my mom and I spent an entire day watching a momma and daddy blue jay take care of their last little one who was just to afraid to follow them up, up, up into the trees.  It took him half the day to make it to the top of the fence!  They just kept coming back again and again coaxing him along.  We sat on the patio together enjoying the entire process.  By  the end of the afternoon he was gone along with his momma.

As I watch those little birds leave our nest, I'm reminded how soon my own will be leaving and it keeps me focused on the job of parenting them well while I have them here to parent.  As this spring begins and the end of the school year is so close I can almost feel it, I know that I only have 1 more summer with my Blake before he is out on his own. OUCH!  He and I will be on the road together again playing ball and making memories.  As much as I miss my girls while we are gone I can't help but be excited about the time I get to spend with him.  Its a blessing and an experience I wouldn't trade for anything!  Oh how I love that kid!

I am so blessed, and my baby birds have come back...its going to be a great day!

It Went By So Fast

Dave,

There is one thought that I can't get out of my mind as we celebrate the last 20 years together today.  It went by so fast!  It really did, didnt it?

I stared at you as you walked in the door last night and I smiled to myself as I realized how much I still love you.  I can't believe its been 20 years.  I simply can't believe how it went by so fast.

As the memories of our life together flashed through my mind this morning I realized something about us. We do hard and we do it well.  Who would have ever thought, other than the two of us, that as we stood in front of God and our families that morning that those two impulsive teenagers would make it?  We do hard and we do it well.  A year later as we packed what little we owned into that truck and moved away from everyone we'd ever known that we would make it?  Remember that day?  It was hard, but we did it and we've never looked back.  I'll never forget the morning I told you we were expecting Blake.  Dave, we were barely 2O years old and had only just begun our life away from everyone else...see what I mean?  We do hard.  Just look at him today!  I'd say we do hard well, wouldn't you?  Jump ahead a few more years...seriously?  Your practice?  A new graduate with a young wife and two babies at home?  Starting our own business?  So hard!    Everyone told us to go to work for someone else.  Everyone thought we were crazy! Those early days when we never knew if we could pull it off or not...that was hard...but look at you now.  I'm so proud you aren't afraid to do hard and I'm so proud that we do it well together.  Finally, when I look back at those days, the early ones, with that tiny baby girl lying all alone in a hospital room down the street from us...it was the hardest!  We did it anyway!  With no assurances, with no promises, with no answers...we just did it.  We loved  her and we loved her hard.  I think we did it well!  As she lay sleeping in her room down the hall this morning I smiled to myself knowing that although its been hard, so very hard, that we are doing it anyway.  I know without a doubt that I'd be too afraid to do hard without you.  Without your strength, your wisdom, your patience, and your optimism...it would be too hard.  Thankfully, I don't have to do it without you.

I'd say that even though the last 20 years haven't always been easy they have definitely been worth it.  I can't imagine a life without you next to me.  We've grown up together choosing the hard path in this life and I love that we are on it together.

Just look at Blake, Allie, and Ash...We are so blessed!  They are the best things we've ever done...every choice, every sacrifice, every day choosing to parent them the way that we have...they are amazing! Without a you and me they would not be them.  No, its not been easy, but its been so worth it!

Dave, I loved you then with my whole heart and I trusted you with it.  I love you now with my whole heart and I still trust you with it.  I know, without a doubt that I'll love you tomorrow with that same heart and that you can be trusted keep it.

Happy 20th anniversary...I wouldn't choose to do hard with anyone else...you've made the first 20 years so much fun that I'm looking forward to spending the next 20 with you.

She Made It!

  I'm happy to announce that our Allie B. has secured a position on the 2013-2014 Pine Tree High School Cheer Squad! Yeah!!!   On top of that... all her friends made it too!  Its going to be a great year.  I'm so proud of her!

Blake hit his first home run of the season this weekend!  Its been a rough start coming out of basketball season and rolling right into baseball, but good things are beginning to happen.  We are hoping to use this high school season to warm up and get his bat ready to be hot as he transitions right into his tournament season this summer.  He needs to be in his best performance shape and ready to play June 1.  He has a 55 game schedule over a 60 day period in June and July of this year.

We are finally finished with the pre-district tournament schedule and are ready for what counts toward a run at the playoffs to begin as soon as Spring Break concludes this week.

Ashley Kate is beginning to feel more like herself and although there is still a large mass behind her right ear there is no longer any drainage, redness, or fever accompanying it.  She is still quite swollen, but I'm not so sure that will reside with the current state of her venous system.  We have yet to find another specialist that will see her for this current infection, but are still looking.  So far the referrals have been denied.

I know she's starting to feel better because she's more active and her laughter abounds once again.  She giggles from early morning to late at night.  Its hard to worry when listening to those giggles.  She's back to making a mess of the playroom and I couldn't be happier to have a mess to clean up!

We have 12 weeks of school left until summer and I think life will settle into a steady pattern of baseball and soccer games.  I'm so happy to be on the down side of this school year and look forward to enjoying these last few months with my kiddos.  In a perfect world Ash wouldn't be battling massive infections, but as long as I see that smile on her face and twinkle in her eye I can't help but feel encouraged.  I find it hard to believe that its time to begin working on her 8th birthday party already.  Knowing that we will be gone most of June and July we only have 3 months to pull it together.  I'm super excited about the theme for this year!  Its going to be so much fun:)

Back to the Cycle

Its beginning to look as though we've entered back into the cycle of requiring blood transfusions about every other week.  Ashley's CBC came in this week with critically low hemoglobin and hematocrit levels along with low levels of red blood cells, white blood cells, albumin, and platelets.

No one is looking for a cause, but rather just accepting that this is the place we've come back to.  I think its just assumed its all related to the choleostasis of her liver.  That of course is being caused by her extended dependence on TPN which in turn is necessary because she no longer has a small bowel.

Ugly cycle.

I remember so vividly the early days of Ash's life before transplant where we found ourselves in the middle of this cycle.  Every week or two she was rushed into the hospital for blood transfusions.  It seemed so scary.  So emergent.  So unreal. There were even a few occasions where they loaded us onto an ambulance and sent us all the way to Dallas for a blood transfusion.  Those days were a blur of activity trying to keep her going long enough for the adoption to be processed and become legal and for us to get her listed for transplant.

Now...its just what we do.  No panic, rush, or fear.

The only symptom Ash exhibits these days of needing blood is lethargy.  She requires long, long naps to make it through a day when her blood levels drop so low.  Her average length of nap this week has been about 5 hours.  Some days its only 4.  Some days she rests for up to 6 hours during the middle of the day.

The blood bank is working to prepare blood for her now and then it will be driven here to Longview.  Once the hospital calls to let us know its here we will admit her to the floor and hang out for 5 or 6 hours.  She should be discharged sometime in the middle of the night and we will come home to crawl into our own beds.  I much prefer the way we handle it these days compared to the early ones.  This will be her third hospital admission in 2 weeks. I don't like the pattern I see developing:(

I had hoped the transfusion she needed two weeks ago was just a fluke, but it is proving not to be the case.  The cycle has begun and there is not much we can do to stop it.  So I'll try not to worry about it all and just go with the flow for as long as we can or until her liver recovers from whatever has been going on these past 6 months.  It doesn't help that she has been on very potent, round the clock, doses of IV antibiotic for all but one week out of the last 3 months.  Her liver is struggling to keep up with it all.

Anyway, this week is proving to be just as stressful as I'd feared it would be.  I'm running on about 2 hours of interrupted sleep a night and the lack of rest and stress are going to catch up with me.  I'm tired.  Mostly just physically tired, but I can feel the emotional wear and tear beginning to pile up too.

There are those moments...

...when I find myself staring...wishing...wondering... longing...for her life to be what theirs is.

  When I catch myself watching the little girls chase each other more than I am watching my son who is out on that field.

  When I listen to the chatter that goes back and forth between those little girls each week and I feel the sting inside of me as I wonder what she would add to the conversation if only she could.

 Yeah, if I'm being totally honest...there are those moments.

But then I have a moment like I did tonight with my tiny girl and all the longing and wishing and wondering fades away and I'm just content.  Mostly because she is content.

We sat on the edge of her new bed ... her on my lap, head resting on my shoulder, and me smelling the sweetness of her freshly braided hair.  She was still and peaceful and so, so precious.  I was tired and weary and needing to find rest.

I rocked and sang and loved on our sweet Ashley until I had almost put myself to sleep.  I held her there for what seemed like forever and when I finally laid her down she pulled up her covers and nestled herself in for the night.  I watched my girl as she wiggled herself comfortable and thought how proud I am that she can pull up her own blankets.  Silly I know, but its something I always seem to feel so proud of her for being able to do all by herself.  There's not too many things that she can do all by herself, but this is one of them. I could feel the smile spreading across my heart as I watched her.

You know what?  I couldn't love her any more if she were running in circles with the little girls at the ballpark.  I couldn't be more proud of her if she were a part of their silly conversations.  Even though I still feel the occasional sting as I sit back and wonder "what if", I know without a doubt how very blessed I am to have her in my life.

Oh, sweet Ash, do you even know how very much your mommy loves you?

Even though there are those moments.

Infection

Its taken a few days to process the information from Ashley's ENT appointment last Friday.  In a nut shell...she still has a severe infection behind the mastoid bone...and although it isn't better... she is feeling better.

Our ENT basically told us the next step to rid her of this infection is a very invasive surgery.  Its called a canal wall down mastoidectomy.  It involves the removal of a lot more bone than the original surgery that was done two years ago.  It will also involve finding a new surgeon willing to perform it on her.  Her current surgeon has never done the procedure on a child and the risks of the surgery itself are very, very high (loss of hearing, cranial/facial nerve damage,post surgical infection are just a few of them).  He is making a few referrals for us and wants to be able to consult with their opinions.

The bones behind Ash's ear are very swollen and there is a very large knot of infection that has formed.  Some of the redness has disappeared and so we are encouraged that the antibiotics are at least keeping it a bay for now.  Originally the ear was swollen and very, very red but there was no knot.  Now the redness is almost gone and the bottom half behind the ear has no redness at all anymore.  She isn't crying much anymore, but does push on the ear.  You can see in this picture how far out the ear is swollen from her head and you can  also see the knot.  The infection is in the actual bone and not the ear itself.  Its kind of hard to explain, but the infection settled into the mastoid bone which is full of thousands of little air pockets.  It resembles a sponge with lots and lots of areas for infection to settle into.

If you look closely you can see part of the incision from her first surgery.  Its the pink line going down toward the ear lobe.  This is photo gives a great perspective how very swollen the bones of the ear are.  On a normal day her ear lays flat against her head and you can't even see the incision.  The ear is protruding a couple of inches off the back of her skull.

We have not determined if this operation is what needs to be done.  Its just what this particular doctor felt he would do next.  When comparing the CT scans from this past week and the ones with the last infection we do not believe the infection is close to entering the brain cavity.  I think this gives us some time.

Putting Ashley Kate through such a huge procedure is dangerous.  In a situation like hers it becomes life threatening.  The risks are very high and it is not something to go into lightly.  We are basically having to decide which risks we are willing to take.  The risk of not proceeding and continuing to try and treat the infection versus the risk of what the surgery entails.   Its an impossible place to be in.

Ash is not a normal child.  She is not a healthy child with an ear infection behind the bone in her ear.  She is a medically complex, severely immuno compromised,TPN dependent, on her last CVC site, transplant patient with an incredibly rare infection.  An infection of this magnitude is not often seen.  It doesn't happen to most children... but we chose transplant for her all those years ago and along with that transplant came a whole magnitude of things.  Severe infections are one of those things.

Currently Ash is on some very strong antibiotics.  Her very sick liver is struggling as it tries to process the medications.  She is very, very swollen.  Mainly in her neck, face, and above and below her eyes.  She's a little scary looking most days.  She got out with us one day last week but that was all.  She's tired of being confined to the house and so we are trying to take her on as many rides in the car as we can.

At this time we are waiting on the referrals, then we will be waiting for the appointments, and in the meantime we are hoping her infection does not progress.

Its a very busy, very stressful week at our house with lots and lots of things going on in addition to Ash's infection.  I'm ready for it to be behind us.