Round and Round.

Right now I’m waiting for rounds. Not very patiently. I need coffee badly. And a reese’s cookie for good measure. But I don’t want to miss the team rounding because they will give the update on what is going on as a cohesive report, vs the piecemeal info I get from random nurses and doctors who come in.

Anyways – things are still going well. Kendall continues to look really good – not at all “bacteremic”. Very very good news! So far her cultures from yesterday, both peripheral and off her line, are negative. We are almost at the 24 hour mark so that is also very very good news!

It is looking like the original bug growing is enterococcus, a gram positive bug that CAN be a hospital acquired bug. They are pretty sure it’s not a contaminant as the original hope was, but are still stumped as to how she managed to pick it up. She also has two gram-negative bugs growing in her urine that are still pending identification. Given the NASTY laundry we were dealing with on Sunday and Monday (and the lingering horrid smell in her bedroom still) – I am not shocked by this. Her urine was basically so full of mucus that it looked like she was peeing skim milk.

All of this is making her doctors think that what we did was catch an infection EXTREMELY early,IMG_4658 mostly only by luck (although I tend to think it was probably more God-directed than anything). And that what could be happening is that Kendall is translocating stuff out of her bladder AND gut – but that because she routinely has these kind of “off days” and autonomic temps, *I* am (claiming sole responsibility here) not getting her checked/treated in time, and it’s going systemic. Now of course her doctors aren’t blaming me like this, they say “how could we know? she’s had just as many times where nothing has been wrong as has been times where something is wrong” – and that is true. But still – the conversations have been more about what will our protocol be for getting her “wonky days” checked out a little better. If we can just put a stop to this current cycle of infections, everyone thinks we will be good to go. we had her infection free for over a year – we can get her there again!

(clearly I got a little more sleep and food since my post last nite – I am able to think much more clearly and be more positive about where we are at!) so anyways – that’s what I know right now, early afternoon.

The doctor we have been waiting to have consult on Kendall’s case just came in. And luckily he lived up to expectations! (this may or may not be because he told me that moms like me are to be listened to very very closely, because we will usually teach doctors a thing or two!) Overall, he was just a breath of fresh air. He had read the history of kendall’s latest infection cycle, and just had a creepy understanding of how and why little organisms work in the human body. He will be changing a few of her meds around, which will mean a rather crazy schedule at home (where we don’t have the luxury of nurses around the clock to do all the work!) He wanted to know if I was going to be ok with that. i told him that if i had to administer IV antibiotics every 2 hours I would do it in order to keep this line clean. He laughed at me a little and said “john (kendall’s special needs doctor) told me you’d probably say that, but I wanted to hear it for myself!”

So we will do the crazy med schedule and new line protecting regimen and hopefully get on top of this cycle once and for all. But our conversation wasn’t entirely focused on this acute situation. In fact, we talked for longer about WHY this is currently happening, and what can we do to STOP it. Most CVL moms know/dread the term “cycle line infections”. It is when your body does what Kendall’s is doing – continuing to spew out infection after infection, as soon as the antibiotics are stopped, a new course is needed. Some kids get into cycles very often – other kids rarely have a cycle, and still others never cycle, but get random infections. No one really knows how or why this difference is. But at the end of the day – Kendall is in a cycle.

He found it very interesting that while Kendall has had cycles before, we also had a year+ of having NO infections. The main difference for that? Kendall’s overgrowth meds. I think I’ve talked about these meds before – they are a bunch of super strong IV meds that we get compounded down into liquid gooey nastiness that we can push through her tubes in order to kill the bad/overgrown gut bacteria that likes to leak into her bloodstream. Due to the nature of the meds and the fact that we need them compounded at a special pharmacy – they are NOT cheap. Insurance covers a nominal amount (roughly $30), and Kendall’s secondary Medicaid won’t even touch them because they are technically “black boxed” meds. Basically this summer, we couldn’t afford her meds. And now we have her back in a cycle. Our special needs nurse sent orders to a local pharmacy up here to see if they can get insurance to see the fallacy of their payment reasoning. $250,000 for a monthly hospital visit, or $250 for a monthly supply of drugs. Pretty sure even a politician could figure out that math. We have two doctors ready to write letters of medical necessity to support her needing these meds and hopefully between all of this, we can get our out-of-pocket costs back down to an affordable amount.

IMG_4591 But those meds are just one part of the equation. We will also be starting the ethanol locking of Kendall’s line to ensure that the broviac itself has kind of “bad bug repellent” on it. And when i asked Dr. Havens how to stop the cycle of infections, he looked at me and said “ Stop the antibiotics”.

Alrighty then!

Basically what he means is this (I’m borrowing his analogy – cause i think its so great! And easy to understand!) – Pretend like your gut is a church. And the walls of your gut are the pews people sit in. You want there to be GOOD people in those pew – nice, pearl-wearing, praise-singing little old ladies who love Jesus. (ok i get that theologically this is not sound, but go with it). Good people in the pews of your church – got it?

well, antibiotics come in and make the good people of church leave. Just kills them, makes them get up and stomp out, take their friends with them – gone. And THENNNNn – that leaves room for all the BAD PEOPLE to come sit in your church pews. Tattooed, bike-riding, swearing, drug-dealing bad people are now sparsely sitting in the pews of your church, and letting all sorts of chaos go on in your church (gut). They run rampant, knock holes in the walls of the church, and now you just have a bunch of tattooed Hell’s Angels roaming around your abdominal cavity and taking cruises in your bloodstream. Kendall’s church does not have good people in it!!! So the way to STOP this activity, is to stop antibiotics. Drink Activia, repopulate your church with good people sitting in nice strong pews, and non-holey walls in your church, eat yogurt and leafy greens. Poop regularly – so you can flush the bad guys down the toilet. Literally.

Clearly, that is a great theory for guts that actually function well. Kendall’s does not. So our goal is to keep the bad guys moving, and reduce Kendall’s antibiotic use as much as possible. This will mean that we treat even less of her UTI’s than we already do. This will mean that she will have more pain again – but there are ways we can hopefully lessen the pain, lessen the risk of re-infection, and keep things moving forward. AND GET OUTTA THIS CYCLE!!

So what I came away with is that Kendall does have an immune deficiency – but it is one of functionality vs. one of a “traditional” sense where her blood cells don’t function well. Her immune SYSTEM (the T-cells and IgG and all that good stuff) that is actually functioning pretty well, given what it has to fight on a week to week basis. It is part of why she DOES bounce back from her infections so well once we get the right meds in place to kick the bad guys out of her bloodstream. That is a very good thing! Finally something her body does RIGHT!! But a major component of a HEALTHY functional immune system, is a healthy functional gut and bladder. That is how germs leave your body – through your waste. Kendall’s body doesn’t have an effective waste management system, and THAT is why she is in this current cycle. Microbiology – I do not understand at all. Gram negative, gram positive, rods, chains, bacilli, fungal pseudohyphae – gibberish. Poop? That i can do.  Keep her pooping and thereby we will HOPEFULLY keep her ridding herself of the bad guys. This is so much easier said than done that i can’t even tell you. BUT – it is a plan that I can understand. There aren’t a whole lot of warm fuzzy answers out there right now – but if this is as good as we can get – I’ll definitely take it.

We still have to have a few more conversations with her team as far as when and how do we react to Kendall’s “off days”. How do we know when to treat and when to sit back? Lots of questions still –but i feel like we at least have a compass heading now. SO much better than yesterday. Again I am blown away with the good care she is receiving here this visit. She somehow convinced her student nurse to take her to the playroom today.IMG_4674 Honestly i am not sure how he managed to convince his instructor that he could only work with Kendall today, and that playing tea party with her was part of the care he ‘HAD’ to give her…But up and down the hallway I can hear people walking by the playroom – oh look! Kendall’s in there! Hi Kendall! How are you Kendall! I am SO relieved that she feels good enough to go play in the playroom, as that rarely happens when we are here! She is definitely getting ready for her Halloween character – Cinderella – by being in RARE princess form and ordering around basically everyone who comes into our room! If it wasn’t so brat-tastic it might actually be cute. Our main doctor (her special needs doc) actually sent a text to her team yesterday when she arrived in the ER:”Kendall is in the ED for the + cultures. She is just TOO CUTE! Wanted graham crackers. I got her some. Admitting and ordering abx.” (One of the nurses showed it to me!) And this is why she thinks she can get away with anything! Being cute is actually part of her charted record!

Anyways – obviously a much better update today than yesterday. That is mostly due to your prayers. So thank you for that! Even I feel much better, lighter-hearted even, than yesterday. It is by the grace of God that our doctor ordered those cultures. If he had not, we would have gone on our merry way with me continuing to chalk Kendall’s bad days up to a brewing UTI. The bugs growing in her urine are QUITE nasty (but not entirely unexpected). If we had let her body continue to get weaker from a presumed UTI, when in fact it was already fighting a bloodstream bug, and those UTI bugs leaked into her bloodstream….oy. I shudder at the thought. It would not have been a pretty picture. I am so beyond grateful to God for His constant protection over Kendall, even as I felt like He was leaving her hanging, leaving all of us on our own to fight another infection – it turns out that He had even MORE protection over her than I thought. you just never know sometimes – how even the darkest road you are on may be the very path you need to take to places beyond your imagination.

I hope and pray that all of you are having beautiful Thursdays.

We’ve been asked what do we need by so many of you wonderful friends and family – and honestly, I’m sure I could rattle off a list if I had enough time. But really, I am happy and blessed and content right at this very moment. I have a sleeping baby (FINALLYYYYYY!!!!!!), who is receiving her needed medications as she sleeps. I have a reese’s peanut butter cup cookie from the bakery downstairs. But most of all, I have HOPE again that she will get out of this cycle. Be her happy, pain-free, silly, strong beautiful self again. HOPE that we will be together again as a family by some point this weekend. It’s a good feeling, this hope. It covers an awful lot of wants/needs/desires. It does not mean that everything is fixed, or that we have solved all of our issues. But the warmth of the hope in my chest at this very moment – it is enough. Dayenu. (<—that links to a blog post i wrote almost exactly a year ago. It still holds true today. Maybe even more so. Go check it out again if you don’t remember it.)

I’m going to try to catch a few winks of sleep myself while Kendall is down for the count. She will want to go IV pole skateboarding later tonite (fun sport, you should try it sometime!), and I may try to go hunt down some non-moldy food in the cafeteria too. Thank you all for everything – the words of encouragement, the notes on facebook, the texts, the phone calls. I know I am so behind on responding to everyone and everything – but know that I read them all, and am encouraged and touched by every single one of them.

If things change tonite, i’ll try to do another update. As of right now, I have not heard of any growth past this mornings negative result, and I am hopeful that it will remain so. We will continue to work on tweaking the meds and the schedule tomorrow, and hopefully head back home sometime on Saturday or Sunday. Blessed be the name of the Lord.

Love you party people!

 

T-crest.

(and yes, the pictures are all random ones I’ve taken over the past couple weeks – nothing from in the hospital! my phone is currently full. I need to dump pics off of it in order to take more. anyone want to donate a 64gig iPhone to me?????? ;)  )

Give and Take.

Our days are filled with the “give and take” nature of  a sometimes invisible disease process. Most days when blog1 things are going well, there is nothing to give, and it takes nothing from us. Well, almost nothing. Or maybe its just that we’ve already given so much, we don’t notice what is being taken. But other days, the days i want to throw things at the TV when smarmy, smug pregnant women tell me that THEY are going to give THEIR BABIES the best things in life by breastfeeding/using similac/no enfamil/cloth diapering/huggies/drinking V8/taking 5hour Energy, or the commercials about chubby babies playing and cooing happily make me want to break down in tears for the fact that I was too busy pleading with God for my child’s life to enjoy that roly-poly time most babies get – on those days, it feels like so much has been taken from us. From her. From my friends who have had to bury their children.

There is a song that is sung in our church as part of our worship service. It is called “Blessed Be The Name of the Lord”. It is based on a Psalm, and is basically the Psalmists way of saying – no matter what happens, i’m going to CHOOSE to praise you, God.

(lyrics by Matt Redman)

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

 

You give and take away You give and take away 
My heart will choose to say Lord, blessed be Your name
That last part is so hard to sing most Sundays. it always has been. Because if i can’t sing it, then i am 
just doing a bunch of lipservice.
it’s not REAL. it’s just a religion, not a relationship.
 But that’s probably a whole other post. What I am trying to say here and now is this – our lives have been
 affected by mito in ways that are hard to
even put in to words.

Somedays I feel “angry” at all that has been “taken” from my baby, or from our family:
The ability to eat and enjoy so many foods without pain (and usually other medical issues that result 
if she tries!)
The ability to play outside like a regular kid.
the ability to go places as a family (she usually stays home with her nurse to not over-stress her body)
the ability to swim, take a bath, splash with her sisters on a warm day in the sprinklers.
the ability to go climb into her own big girl toddler bed.
the ability to have a body free from tubes and wires and sensory overloads and 
not-quite-up-to-par functions of body systems
the ability to live a pain free, happy go lucky life free of hospitals and specialists offices

I could really get going on the things that i feel are “taken”. It would be SO EASY some days to give 
in to the bitterness that takes root so easily in the soul when life doesn’t go “just like we hoped it would”.
But the truth of the matter is, that it has not taken HER from us, so what really do we have to complain about.
And the truth of it is, that all of that, up there, is not the focus of our lives, 
and i never want it to be what takes front and center stage here on my blog.
With the bad comes the good.
So what have we been given, what blessings have been bestowed upon us “because” of what Kendall’s 
diagnosis brings us…
We have been given an insight into what “priorities” really means.
We have watched our daughter exhibit a strength and bravery at her young age that would make ANY 
parent proud.
we have been the recipients of people giving of their time and money to help us stay together 
in times and places it seemed impossible.
we have witnessed the GOODNESS of human nature – and let me tell you – that is a priceless gift indeed.
we have stood on the edge of a dark cliff, looked the abyss in the eye, and said 
“not today – you’re not takin her today”.
 the incredible amount of strength and confidence you get from being able to be in that place is 
an indescribable feeling. Most people will never know what i’m talking about. And for them i am both
incredibly happy, and incredibly sad.
We have seen people exhibit “friendship” and “walking beside us” in ways that are so much deeper 
than surfacey lip-service.
We have learned what it means to be “rich in happiness”, and how extremely healing 
a good deep belly laugh can be.
We have learned the meaning of “simple joys” – of rejoicing in the mundane, the miniscule, the miraculous
 – a first smile after an illness, a new word whose timing
is surprising, a mess made that represents a milestone met.
We have learned that CHOOSING TO BE GRATEFUL is to choose life.
We are learning that making that choice is rarely easy, but it is always worth it.


I read a blog post recently (go HERE to read it for yourself), and it struck such a chord of resonance
in my soul. It speaks of a word the Israelites would use after they had been given a blessing
 (seriously just go read her blog,
she explains it WAY better than i ever could!) How often can we say “Dayenu” – it would have been enough. 
when I think about this struggle
between “give and take away”, I realize that it is not quite right. We were never promised that we would
be “given” anything in life. No one ever sat me down and promised me that i would have four beautiful
baby girls and they would all be happy roly poly Gerber babies free of problems and brattiness.
No one promised that our lives would be without storms and cold nites and hard days and really crappy stuff.
No one has ever promised me that Kendall would be healed completely and live a totally normal life.
No one ever promised us that WE would love from one sunrise to the next.
And so in our good times and our bad times, we must learn to say “Dayenu” – It is enough.
It is enough that we are given this breath, this moment, this day.
It is enough that we have what we have been blessed with by our God.
It is enough that we have memories, treasured times, blessings, life.
God is good when our prayers are answered, and HE IS GOOD when they are not.
It is not mine to say “you give me this, you can’t take that away”.

And so I will continue to sing, with tears in my eyes, and the words faltering out, 
and with a slight tinge of jaw clenching because
these words are not easy to get out:
you give and take away.
you give and take away.
my heart will choose to say,
Lord, blessed be your name.



Terra.


Many many thanks to Lore, author of the blog referenced above, for her post that inspired this post today.

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