Gut Bug?

We have an id on the bacteria growing in Ash's central line. Its a bug she's never had before. We had to look it up to try and figure out what it was and where it came from. In all the literature I can find it looks as though its a gut bug. That means it is commonly found and grows inside the guts(bowels) of humans. What does any of this even mean?

Well...

I'm not sure on the length and course of treatment for it since its a new one for us.

I'm not sure how she could even get an infection from her gut since she technically doesn't even HAVE one. She only has approximately 2 inches of bowel inside of her.

It's pretty evident that the bug translocated from inside those two inches and found its way into the central line catheter that is inside of her.

It gets more interesting all the time!

In addition to all of this...we've lost blood return for the 3 time in less than a week in the central line. Its a very hard flush this afternoon as well. I don't know what else to think except that her central line is getting old and worn out. We've never encountered a clotted line this many times in such a short period of time. Usually we get months and months between. What it boils down to is this...without the continued use of her line we will essentially be out of time. Something I hate to even consider. I'm hoping for return of function today.

So we are battling gut bugs and damaged central lines. Not a lot of fun in our world today:(

But...she's still giggling:)

Pretty good...considering

She's doing quite well and feeling pretty good considering she has an infected central line and bacteria flowing throughout her blood stream. I'm totally surprised at how fast she's turned around. Surprised at how fast she got sick...and then turned it around.

Night before last I spent 8 very frightening hours with Ash watching the all too common changes in her status that come with each recurring line infection. It never fails to cause my heart to race along with hers as I watch her body deal with the flush of bacteria through her veins. She was scared, trembling, not oxygenating well, and turning blue around her lips. Her heart rate had increased from the mid 70's to 155. I new instantly it was a line infection. She remained in that state for the first two hours. Then as the trembling and the fear in her eyes subsided she spiked a fever. Literally in seconds the changes were occurring. Her temperature remained at her normal 97 degrees during the trembling and then jumped to 102. She remained febrile in the ranges of 100 to 102 for the next 6 hours. I sat next to her bed watching her and willing her to be ok. Then the fever disappeared and she giggled. Loudly! She was so happy and so relieved to be feeling better. She spent the morning playing on her Ipad and giggling while I drew blood cultures, called her doctors, the lab, and the pharmacy.

She has remained happy, fever free, and overall pretty good considering.

She looks rough. Her eyes have dark circles around them. Her face is and has been for over a week very, very swollen from her SVC syndrome. Her skin coloring is off as is the coloring of her eyes. Her bilirubin has been climbing for the last month. Her blood chemistries are all out of whack. She doesn't look that good to be honest, but she's feeling better than she should be.

In the grand scheme of her life I'd say she's handling this infection pretty good. Outside of the initial 8 hours that alerted me to the infection she's doing quite well and I'm very grateful.

We still don't know what bug is in her blood or how long this course of treatment will last, but we do have her line working again. Bacteria and all. I'd say that's pretty good...considering.

Gram Positive Cocci...

in pairs. That is what has grown out in the cultures.

Last night was really long. Ash and I were up for most of it. We went to sleep about 6 this morning.

Today, outside of being tired was actually much better than I could have anticipated. She's happy. No fever. No trembling. No hollering. Still...we have the infected line to deal with and treat.

We are starting with vanc on an every 8 hour schedule. Hopefully we will have a definite id soon and now the sensitivities.

Her labs are off. Low platelets, hemoglobin, wbc. Lots of highs and lows like potassium, calcium, etc. Liver functions all elevated. Enzymes all wrong. Just not looking as good as we prefer them to look.

We've been here before. Done this a time or two or honestly a dozen.

I'm hoping for a quiet night and some sleep. I think we both could use it. As soon as this med finishes up we are going to lay down.

Getting Through Tonight

In the last two hours things have changed with Ashley Kate. I knew something was going on with her.

She woke up hollering which is very unlike her.

I went into her room to find her curled up in a little ball and trembling. Immediately I knew I'd seen this before.

Its an infection.

No fevers, but uncontrollable trembling and a look in her eyes that tells me there is a line infection.

Its brewing. Bacteria is there, in her blood stream. I've seen it before.

I'm sitting up with her for the night. Watching her closely. Monitoring vitals. We've just got to get through tonight. I'll get blood to the lab asap and get orders first thing in the morning. Going in tonight is absolutely pointless. We've done this a hundred times before. Literally. We've rushed around and tried to hurry just to arrive and learn they won't do anything for us. Not at night. Not outside of our pediatricians office hours. Maybe force us into an ambulance so they don't have to deal with a sickly, pediatric patient. Our doctor's not on call tonight so instead of starting antibiotics they'll make us sit. He's the only one in town not afraid of Ashley Kate. The only one in this town willing to jump ahead of the game and get things going before blood work comes back. Nope, as long as she's stable I'd rather sit here at home with her than in a hospital ER or an ambulance.

Have I ever told any of you how much I HATE this part of her life? The sick part. The central lines. The transplants. The awful helpless feeling I have when it comes to caring for my daughter. Medically fragile status SUCKS! Poor prognosis SUCKS! Terminal illness SUCKS!

Have I ever told any of you how much I LOVE the other parts of her life? Giggling. Silliness. Happy days. Twinkly eyes. Infectious laughter. Ornery attitude. Joy.

I love this little girl. I adore my daughter. I'd do ANYTHING to give her just a normal life. Absolutely anything.

On top of it All

Seems like daily, every single day, on top of it all... you know the everyday burdens of raising a family... we have this heavy weight waiting to be dropped directly on top of us. A day that it doesn't fall is what I consider a good day. A day where it simply presses down on me rather than squashing me is an ok day. The day when its no longer there is a day I can't fathom.

Ashley's had some good days and some not so good days this last week or two. I can't put my finger on anything in particular, but I can tell that something is off.

Three nights ago we lost function of the main lumen in her central line. After some very, very tense hours(almost 4 to be exact) function was restored and we managed to keep the entire weight from falling on us. We felt so relieved because of how well it was flushing and drawing after that close call.

As we were hooking her TPN up to the line tonight we lost function once again. It was flushing easily, drawing back easily, and then locked up tight literally in the next second. Once you check for blood return the cap on the end of the line fills with blood and you have to flush it back through the catheter into the vein, it was in that second that it takes to push the blood back out of the cap that the line quit functioning. Its locked tighter than I have ever felt. In all the years and all the central lines Ash has had placed we have never seen it happen like this. Never felt it so tight. So impossible to flush or infuse into. Dave and I are left with no options at all. No saline, no heparin, no TPA will infuse into the lumen. Its gone. All function has ceased.

I'm sitting here in this moment feeling crushed underneath the burden of it all. Knowing that the only thing that keeps my daughter alive day after day is failing. What am I supposed to do with that knowledge? How am I supposed to feel? Can I stop this from happening? I'm so tired of watching the weight dangle above our heads. I'm so helpless to make life any different for any of us. I'm just sitting here, with no where to turn, no way to make it work, nothing I can do.

Our only saving grace tonight is that she has a double lumen and the smaller of the two is working. For tonight, that keeps us here, keeps her home, keeps her alive.

We have never seen a line behave the way this one has tonight. So soon after clearing it. It was literally three nights ago that tears stung my eyes as Dave and I searched and searched for direction on what to do when TPA failed to clear the line. We were lost. Struggling. Scared. We couldn't get it to draw back out of the lumen. It did nothing after dwelling hour after hour. We laid down out of pure exhaustion and set the alarm for 30 minutes and decided once it went off we would give it one more try. As Dave got up to attempt the withdraw he asked me to pray it worked. I feel asleep praying and pleading for blood return and the removal of the TPA. He came back into our room and held up a syringe full of blood.

Tonight I'm staring at this same lumen with no function at all and wondering what I'm supposed to do with it, what happened in that second where it stopped working, and how to proceed tonight. When I say I'm tired, I mean it. The burden, the worry, the struggle has worn on me so severely as of late. I long for carefree days. I would love to live a day of life with my sweet Ashley Kate that I didn't have to worry about her survival. Those kind of days don't exist in our world. For more than 6 years now I have worried about just making it to the next day with her.

I guess I'm going to lay down and pray and plead for help. Pray for His hands to reach down into the life of my tiniest girl and make that line work. I don't know what else to do. I've been crushed by the burden tonight and have no way out from underneath it.

In an easier world, a better world, our previous world, the line would have been pulled and replaced. We just don't have the luxury of living in that world anymore. When your on the very last line possible you hang on to it not matter what. I'm finding us doing that more often these days as we try again and again and again praying for function to return.

This...on top of it all...is where I'm at...and she sleeps soundly in her own bed tonight. Something I can smile about and be grateful for.

Allie Girl

Allie Girl,

Its here! Today is your 14th birthday and I stare at you from across the room and still see our little girl. Even though I know you aren't so little anymore. I'm reminded of that daily in our conversations, our conflicting opinions, our interactions, and our time spent together, but still there are moments if I concentrate hard enough that I see the little in you. Its there and it comes flooding back to my mind through the memories I hold onto from years past.

Allison, I am so proud of you. You are truly a beautiful girl. I'm watching you find your way and figure out who you want to be. Its sooooo hard not to jump in and try to make you something I think you should be, but yet so amazing to watch who God is molding you into.


You make our home fun! You have so much of your daddy in you that life can't be anything but fun when your around. I love that about you. We laugh so hard at the things you say, the ideas you come up with, and the everyday, common sense that should come so easy, but yet is somehow so hard for you to understand. I love your innosence. I love your lack of understanding. I love your ability to laugh at yourself and your ability to make those around you laugh. You don't take life too seriously and that is one of my favorite thing about you.

You are the very best of both your daddy and I. How I wish I could be as fearless as you are my sweet girl. In so many ways I admire that in you. Nothing frightens you. No one intimidates you. No circumstance keeps you from doing exactly what you want to do.(That can be good and bad!)

I'll never forget the first moment I saw you. This rush of awe and responsibility flooded over me. I gently touched your tiny face and realized that God had placed in my hands the job of raising you to be an amazing young lady. I'm not so sure that its your raising that has made you into one, but I do see that you are becoming just that! It makes my heart soooo proud!

Allie Girl, there are going to be those days when you and I don't see eye to eye. We've had a few of those lately:), but I promise that at the end of those days I will still love you. I will still be there for you. I will still be on your side. There is NOTHING you can do that will ever change the way I feel about you. Our home is your refuge. I am your safe place. Your daddy will protect you. Your big brother will fight for you. Your baby sister will always adore you. Friends will come and go, teachers will not understand, boys will change their minds, teams will lose, and you may not always be awarded what you are trying out for, but...remember this...our God, your Saviour, and your eternal salvation WILL NEVER FAIL. I can promise you that.

I pray you have the BEST day today. I hear its already starting out to be and I'm so excited for you. Stay true to who you know you are. Keep working hard to achieve your dreams. Know we are all pulling for you. Today and everyday of your life. Happy, happy birthday my beautiful Allison Brooke. You are so loved!

Parenting

In my opinion its the hardest job in the world and yet with it comes the greatest of benefits. Moments when I wonder what in the world they were thinking, moments when I'm so proud of them for what they were thinking I can't believe they are mine.

When your kids mess up, you feel the weight of the world on your shoulders knowing they are your responsibility( trust me if your kids haven't messed up, they will. Its part of growing up.). A responsibility given to only you by the Creator of the world. When they do something right you feel the biggest sense of pride and accomplishment knowing the Creator of the whole world allowed you to be a small part of who they are becoming.

At this moment I'm so extremely proud of one of my kiddos for standing up for who they know they are. Not settling. Following their own dream. Staying focused on the goal. Wearing blinders to block out what the rest of their crowd is doing in order to stay on track.

Although my heart breaks over their heartache and I lay awake through the night hurting for them, I couldn't be prouder of this kiddo. Seriously, one of the best around. Simply the best.

Hey kiddo,

I just wanted to say...

Hang in there. Keep pursuing. Know that we are in your corner and we KNOW the truth of who and what you are. The day will come when it will all be revealed. Anything worth having is worth working and fighting for. We are proud of you. So very proud.

Love,

Mom and Dad

Polka Dots

Ashley Kate's face is polka dotted this week. Not sure why. No idea what it is. She's been no where lately. Had no contact with anyone outside of our little family in a couple of weeks. Other than having a couple of dozen red polka dots scattered across her face she seems fine. Giggly, happy, normal. Just polka dotted.

Over the years I've learned when we can "watch and wait" vs. when we need to "go now". I think this is one of those "watch and waits". I'm sure it is.

I keep hearing the words of one of her transplant surgeons in my head. "We have no idea what is going to happen to these kids. They will present with conditions we've never seen, never identified, never known. Its just the way it is when you place inside of them organs that don't belong and drugs that have just been discovered. Its new territory. For us and for them." Kind of made me feel as though our babies were lab rats, but when your facing the end you'll agree to almost anything to give them the opportunity to grow up. Gambling with the highest of risks and the odds not in your favor. Maybe one in a million so to speak, but if your daughter is that one then by all means it was worth it. As much as I hate transplant and all its horrors its given us 6 years with her. God willing it will one day give us 6 more.

I really think this is yet again one of those things. Something we won't identify, won't know where it came from, and don't need to treat. Just allowing it to run its course. Fortunately for Ash this one doesn't seem to be causing her any discomfort(unlike a few she's known in the past).

I have to admit polka dots are not doing her any favors. Not a pattern I would have willingly chosen for her face. A skirt maybe, but not her sweet face.

Another Monday

Its Monday again. Cold. Rainy. Wet. Monday.

Ash and I are doing laundry, staying inside all day, keeping warm and dry. She's laughing so hard and so loud it makes me laugh too. I'm not sure what has her so tickled, but it really doesn't take much these days. She loves to laugh. Her laughter is heard throughout the house. Last night as I stood visiting with Blake in his room he stopped mid sentence, listened, and said, "I love her" with a smile that spread across his face. Her laughter interrupts each and every conversation around here because we can't help but acknowledge how much we love hearing it. Allie spent one night in Ash's bed this weekend giggling and laughing with her into the early morning hours. Nothing more precious than stumbling upon one of my teenagers curled up next to my sweet Ashley in her tiny bed. I love that image! One I hope to never forget.

I've lost track of the number of Monday's we've been given since ex-plant, but I used to count each and every one realizing it was another one we were told we weren't supposed to have. Now I just take a moment to look across the family room at my big girl and then smile realizing we are sharing yet another one. Its amazing when I stop and think about it.

I spend most of life ignoring what is to come and absorbing what is now. Every once in a while as I'm dressing or bathing my sweet girl I stop and stare at the coiled up white piece of plastic that is taped onto her chest and I feel the breath drain out of me. Last night as I bathed her it happened. Its the most important thing we have in our home. Her lifeline. Knowing that if its functionality is lost, or it becomes broken or pulled that we will be forced to walk the path that leads to the end of life as we know it. Such a responsibility. Such a frightening thought. No wonder I determine not to think about it too often. I can't imagine life any different than it is today. I just can't.

Most days I spend being amazed at how normal it all seems. Life after ex-plant, with her last central line in place, keeping her alive. If you don't stare at it, then you really can just go on living as if all is well. She's so happy its hard to imagine her any other way. The haunting memories of days past fade away with the joy filled moments of days present. She spends her time playing. Not worried about a thing. Just being little without a care in her world. She is unaware of her own struggle to stay alive and even though I would love for her to be "normal" I'm grateful beyond words that she has no understanding of transplant, and infection, and death. She just doesn't get it. What mercy! Humbles me.

Our home is busy as always with two very active teenagers and our little Ashley Kate. We run from this practice to that, two to three games a week, tournaments on the weekends, and all the in between. We spend our days watching our children grow and mature in their individual talents and I am so aware how quickly time is passing. I stay determined to take it all in and not miss a moment. I love the rare occasion when we all have no where to go or nothing to do, but love even more watching who they have become as they follow after their dreams.

Life is never going to be problem free, and its far from perfect, but it is precious. That I have learned. May I never forget.

Cravings

She's such a funny little girl. Keeps us laughing daily at her silliness.

Lately Ash has been extremely interested in vegetables. Not sure but it seems as though she knows she's missing out on something and has decided to no longer live without them.

Ashley Kate doesn't have the ability to eat. Never really has except for a few brief months here and there of devouring baby foods. She's never learned to bite or chew. Has never had the ability to handle any type of texture or "chunkage"(totally new word I just made up:). When she lost her bowel a year and half ago she also lost the ability to digest foods. So she doesn't eat. Anything. She does drink though...and this is what this post is about.

Now when I say she drinks things what I mean is that she swallows them, they trickle down her esophagus into her stomach and then they drain out of her g-tube extension into her drain bag. Nothing really stays in her system for more than a few moments. She is totally consumed with drinking though. Its worse when she's dry, but even when her BUN and Creatnine levels are normal she enjoys the process of drinking.

Dave and I have been juicing two of our three meals a day for the last 3 weeks. Mainly for the nutritional benefits of juicing. Its been an adventure, and Ash has now joined us on this journey. She LOVES the vegetable juices. LOVES THEM. Yells at me all day to "fix" her a drink. Water is no longer enough. She wants cucumbers, spinach, carrots, kale, brussel sprouts, apples, kiwi, tomatoes, etc, etc. Even bok choy! She cracks me up! The sound of the juicer causes her to break into a stretch of giggling that is uncontrollable. She gets soooo excited! There are days that the concoction of juices is too much for me to swallow, but not Ash. She can't get enough. All I can account it too is that she is craving foods. We have finally figured out a way to allow her have some.

Most 6 years old at Walmart want toys or candy. Not Ash. Her cravings for veggies have been exhibited on the shopping trips she occasionally takes with me. Last month she wheeled her self right up to the produce bins and after much searching found herself a cucumber. It cracked me up. She held it the entire time we were in the store. Showed it to everyone who would even glance her way. Played with it the entire day and went to bed with it that night. Just last week her choice was a bell pepper. She was so excited to have that pepper. Most people just laugh at her as she shares her excitement. At the check out we couldn't pry it from her hands! The next morning as I went in to pick up the playroom for the day I found that silly pepper lying on a stack of puzzles. It was well played with, squashed, and wrinkly. Like a well loved toy. Made me smile.

I never cease to be amazed at who she is. What she chooses to love. How she grows. Learns. Develops. There is nothing ordinary, typical, or normal about this little girl who changed the way we view this world. I love her for that. Forever grateful to call her mine. Humbled to be part of her world.

Perhaps the next time you eat a slice of cucumber you'll be reminded to whisper a prayer for our gherkin and perhaps just tell the Father how grateful we all are that she's still with us. Love you guys. Miss sharing with you daily. Hope your all well. Trish