Live the Life You Imagined.

When I was young and full of idealistic romantic views about how my life and love would be one day – It never looked anything at all like what my real life is.

I loved this quote from Henry David Thoreau and I always “imagined” my life being about me finding myself deep in the woods on Walden Pond too, and being this amazing writer and living this quaint quiet little life.

Life has a funny way of shaking up what you thought it would be and making it into probably what you need, but never would have asked for.

Today I am torn between my desire to go double fist two Venti Starbucks quad shots and be the most productive person on the planet, and curl back up under the 14744-Live-The-Life-You-ve-Imagined covers for a good cry. I will probably end up doing some combo halfway in the middle.

Last week the beautiful daughter of my best friend passed away and I have walked through the Valley of the Shadow of Death with her over these past days. It is beautiful and heartbreaking and really super hard….yet I wouldn’t have been anywhere else in the world besides right there with her. In the hard moments and in the glorious ones. I have cried so much this past week that I feel dehydrated. And just when i think i’m done crying, something happens to set me back off. I have a whole other blog to write about all of that…

And in the midst of all of that emotional upheaval, I am preparing for Kendall’s surgery tomorrow. It is the one we knew would have to happen when she started having her line issues/infection a couple weeks ago. Rather than sit in the hospital for ten days, they released us to home on IV antibiotics to clear the infection and plan where and how they are going to either fix, replace or give her a whole new line. There are no other spots to put it. In almost 8 years of constant use and abuse no small veins should ever have to endure – hers are scarred over, clotted off, or otherwise just not strong enough to support what is needed of them. I don’t talk about this a lot because, well, it really sucks. I do my best to shield people from the harsh realities of what Kendall actually lives with, endures. Her battle is one of quiet yet fierce strength, and to overdramatize that serves no purpose. But this is where we are at. A world class surgeon scratching his head and unsure what his plan will be once they wheel her into the OR tomorrow. A momma who is scared shitless about the ramifications of this surgery. A little girl who has endured countless surgeries and procedures but THIS time has been able to voice her nervousness, her fears about how it feels to wake up with the tube in her throat, how bad it feels when she gets too much gas anesthesia (yes she uses those words!)

This surgery, more so than any other before, I have to leave in the hands of a God who has never failed us before. And oh how hard this is. It is SO unlike that peaceful little idyllic life I had imagined. I am in turmoil, there is chaos surrounding me in the logistical planning of my job, activities for my babies, not leaving them alone but not knowing what the hospital stay is going to look like, making sure that everyone around me has everything they need because that’s just what I do. I keep everyone happy and moving and doing what they need to do. But this….this feels overwhelming.

I know there’s all these happy little trite things you say to someone in my position. I know all that because I’ve said them myself to others. But oh how my heart hurts right now. These are hard days. They just are. There is no sugarcoating how scared I feel, how I cannot stop crying for reasons I’m not even sure of, I just know the tears fall on their own, how I don’t know how to just “fix” everything and make it all better.  I cannot sugarcoat that and I don’t expect anyone else to do it for me. I will find my peace when I quiet my thoughts and my heart. I know I will. Right now, I just need to get this all out.

And even in this, the journaling of these thoughts and feelings in my space, like I always have in the past – it is helping. I have held my pain in deep inside for so long, but this is where I feel happy…writing my thoughts. I will get back to doing it more regularly.
Today, I will pray over Kendall’s team of doctors that is meeting this morning to talk about our best options for Kendall’s line surgery tomorrow. I will pray that the God who has done miracles before will miraculously open her little veins, will strengthen them, will guide her surgeons steady hands to exactly where they need to be. I will pray for my little girl who feels a nervousness no 7 year old should have to feel. I will figure out how to pay for the stupid American Girl lego’s she is asking for for after surgery and I will put a smile on my face and i will rock her and tell her all of this will be ok. I will be momma bear to that know-it-all anesthesiologist and tell him no you may not use full gas for this procedure even though it’s easier for you. I will tell Kendall I will protect her always and no matter what.

In the words of Marcus Mumford (<3!)

” I will hold on to hope, and I won’t let you choke on the noose around your neck.

I’ll find strength in pain and I will change my ways

I’ll know my name as it’s called again.”

 

I will figure this all out and I will get through it like I always have in the past. Because it’s what we do.

I may not be living the life I had imagined, but I think maybe in a way I am. I always imagined that I would be the heroine of my own story, I would be strong, I would endure under any circumstances. And I think i’m doing that ok.

And now I have to go get that super strong coffee and start doing all the things I have to do.

Peace out party people~

 

T

Cheers.

Not the drink kind.

Well, kind of the drink kind. Except I currently don’t have a drink in my hand.

I mean the kind where it’s a bar where everybody knows your name. except it’s not a bar, its the hospital.Cheers1

That’s kind of how it felt yesterday when I wheeled Kendall into our unit and there were nurses waiting in a line down the hallway saying “welcome back!!!” and escorting us right back to the same room we had just left about 24 hours before.  But kind of like the song says “you wanna be where people know your troubles are all the same, you wanna go where everybody knows your name.”

I know there are some of you who are understandably confused about what it all means that we had to come rushing back up here yesterday after we were supposedly ok to go home. (Don’t worry, i’m mostly still confused about it all myself!)

Basically, when we were leaving on Saturday afternoon, we knew that one of her cultures was growing positive, but it was a pretty late positive, so they let us go anyways because a.) I was already packed up and none of the weekend people wanted to come tell me i had to unpack, and b.) the assumption was that we were starting to get on top of the bug so continuing with our meds at home would still be an appropriate course of action. Well Sunday morning another one of her cultures popped positive, and one of her main doctors was actually around to see this news. Infectious Diseases was consulted and the decision was made that we needed to get her old line out as quickly as possible as the belief is that these bugs have now invaded and set up shop on the line itself and that could set her up for a REALLY bad infection if they hung out there waiting til the antibiotics were done. I don’t fully understand all of the reasoning, and i know there was a lot that went into the decision, but the bottom line – we had to get the line out.
So i packed up the laundry I had just done, put the unpacked bags back in the car, and drove back up here. Except I forgot my awesome mattress pad that makes the boxes of bliss semi-bearable so….that kind of sucked!

In a normal course of action – the old line would be pulled and a temporary PICC line would be placed.  A PICC is a peripherally inserted central catheter – basically it threads through the arm and into one of the main heart veins. It is a good temporary solution between permanent lines – for a lot of kids and adults. Unfortunately for Kendall, her arm veins are mostly scarred over and get VERY unhappy with any use – especially a double lumen PICC. They usually cause more problems (clots, occluded lumens, just a general pain in the booty) than they solve, but they are sometimes a necessary evil.   complicating the matter is that most PICC’s are made of polyurethane, and you cannot clean the area or dwell alcohol in polyurethane because it starts to melt it. Kendall can only use betadine/alcohol to clean her sites, and she relies heavily on an ethanol (alcohol) dwell to help keep her line clear of the bugs – ESPECIALLY when we cannot get clear cultures, like right now.  So all of this led to our surgeon needing to think way outside the box about the kind of line he could place, where he could place it, and how we could still get the access we need.
This of course is all based on which of Kendall’s veins are still open/usable (the more veins are used, the more they tend to scar over and become unusable. At one time Kendall only had two veins open for central access, but miraculously a couple years ago a line study showed that two other sites previously thought scarred were actually slightly open.) ( I realized there was one other question on Kendall’s page I meant to answer too: Can Kendall have a port? And the answer is really no. Ports are great for people who only need occasional access and who have actual immune systems. Neither of those applies to Kendall. The placement and removal of a port is a much more involved process than with a broviac which is the type of line she has now, and while we initially tried a port for her line needs, it quickly proved to be a very poor choice for her. So that’s why we can’t do a port!)

Anyways – all of that led to what we have now – a broviac line that is only a single lumen that is non-tunneled but goes centrally to her heart, and a midline IV in her forearm that should hold a little more steady than a typical PIV but not tick her BC vein off too badly. This is not an ideal situation – because we cannot leave the hospital with either of these lines in place. And neither the ID team nor the surgery team will place another central line in her until we have five negative cultures (which translates to ten days in Kendall dollars). I did hear one person say 5 days of negative cultures, which is a different story though – so i’m hoping everyone means THAT instead of five negative cultures because the thought of being here for ten straight days makes me want to eat all of the donuts in the world and cry the ugly cry. It is different to be here with a pretty stable Kendall vs a very sick one – of course when she’s very sick it’s not a question this is where we need to be. But right now we are in a gray area. She is still definitely not quite herself, and her care at home is VERY demanding. Yet – she isn’t SO sick that all she wants to do is lay in her bed. Therein lies the challenge. Entertaining a child who WANTS to be up and doing something, but doesn’t have the energy to do so, and still requires being hooked up to multiple machines and monitors making doing much pretty impossible. Please know that I am not complaining that she is doing so well~ I am SO thankful that she is handling this illness pretty well from an infection standpoint. I just feel….”stuck”. I almost always have a good instinct about whether it’s time to go home or time to stay here inpatient, or what direction we need to look in or head in….and I don’t have that this time. I don’t like this feeling but I know in part it is just God telling me to slow down and trust HIS timing and His plan.  And I am reminded, somehow, sitting here in this small room with the constant beeping of monitors and the discomfort of this vinyl coated boxy couch bed, and the chill of the conditioned air being pumped in – of sitting on a warm beach, watching the waves crash onto the shore. There is no sense of timing to them. They come and they go and they just are. And I am trying to be like that – knowing the waves come and they go and they just are and all I can do is keep my eye on the One who knows that even in chaos there is order and even in discomfort there is joy.

So today we will wait some more. For a plan and for clear cultures and for sleep and for whatever this day holds.

I’ll update again once I know more!

Keep on Keepin On~

Terra

Another turning point.

Another turning point, a fork stuck in the road.

Time grabs you by the wrist – directs you where to go

So make the best of this test and don’t ask “why”

It’s not a question but a lesson learned in time

It’s something unpredictable that in the end is right

i hope you had the time of your life.         —-Green Day, Good Riddance

 

I love that song. Not just because I’m a huge Green Day fan. But because the punk anthem speaks truth – asking “why” is not always a question to be answered but a lesson you can only learn as time passes and you look back over your shoulder.

As our long weeks of this stay seem to be nearing their end, I am finally having a few moments to sit and reflect over all we’ve been through this past month. I haven’t come to any amazing earth-shattering conclusions, so i’ll keep my muddled thoughts on the “why” of all of this to myself til i’ve had more time to process through them. But it has put me in a reflective mood. I received an email this morning from a dad in our local UMDF (mito support) group. His daughter Rachel passed away two floors below where we sit on Sunday night. His email was in response to me letting him know that I was here to offer help in any way I could. Kendall’s crisis was “ending” as Rachel’s was picking up speed. His words were those of peace…I can’t finish that thought. mostly because i don’t know where it finishes. He was at peace with the fight his daughter has fought and knows she is healed and whole in Heaven today. It is adding to my reflective and pensive mood. Please keep the Kedrow family in your prayers.

IMG_1783

Tomorrow morning Kendall will be an “add-on”. More like a “squeeze-in”. She doesn’t have a scheduled surgery spot but they feel that they will have time for her between two other procedures. I didn’t talk to a surgery resident myself or the conversation would have been more like this:

“So we think we can squeeze Kendall in early tomorrow morning between two longer procedures since placing a broviac is a pretty easy and quick procedure.”

Me:” haa haa haaaaaa ha ha ha ha haaaa ha ha ha ha ha ha ha ha ha ha. {picks self up off floor from laughing so hard.} Um. Clearly you haven’t read kendall’s chart. And/or reviewed her history. But sure. Go ahead and try to ‘squeeze her in’.”

I’m hopeful that she really will behave and be quick. i don’t anticipate that she will pull any stunts like last week’s craziness, but I just know she tends to give them a run for their money down there in the OR. Please be in prayer that the line replacement goes as smoothly as it possibly can, and that her blood pressures DO remain stable without too much intervention. We are hopeful that we have a plan in place to stay on top of her pain management, both pre- and post-operatively. (Line placements typically involve a lot of tugging/pulling at the chest wall and leaves Kendall pretty bruised up for a few days – I would imagine it would feel like of like being a punching bag in your upper chest area. Pain control post-broviac-placement is always a tough thing, not even counting her withdrawal issues!)
On top of that, I am supposed to be meeting with two member of Kendall’s medical team to discuss future plans for staying on top of her infections – and both a long term plan for her care as well as short term “let’s get home soon” care. Please be in prayer that we will all communicate effectively at this meeting, and that my true heart for Kendall is heard by her doctor. Please pray for wisdom for him to discern what is the best course of action as we look to take Kendall home and plan for how to KEEP her there! I don’t believe we are going to solve any major mysteries at tomorrow’s meeting, but I do hope we all walk away at least on the same page, and having made a few good decisions regarding her acute home care plan.

So – a full day tomorrow. One day closer to getting home. The whispered plan is that Friday is the day. I think she’s ready. i know I’m ready!

My thoughts are becoming more scattered than usual, and I should probably get in bed so I can be up and ready for them if they do come transport Kendall early in the morning. Sorry if this post is scattered and hard to follow. It really is just me getting a few of my feelings out and onto “paper”.

thank you for your prayers – thank you all for everything.

keep on keepin’ on.

 

terra.

That first breath.

This morning, for the first time in her life, I got to witness my child take her first breath.

When she was born, she was whisked away from me because she was not breathing. She was intubated and extubated in the NICU without me there. I’ve never been present any other time she needed to be extubated for various reasons. But today I got my chance.

I woke up to her silently crying (the breathing tube has a “balloon” that blows up just below the vocal chords to keep it in place, so you don’t hear noises coming from your intubated child typically.) I went to her and held her hand and told her that soon it would be over. Our beautiful angel Rachel peeked in the door and said, i was waiting for you to wake up! It’s time to take out that yucky tube! I ran to put my contacts in and brush my teeth and by the time I came out of the bathroom a nice little party of people had gathered. Kendall needed some major suctioning in preparation for extubation, which she was NOT a fan of.  The tape was slowly unwrapped, the cheek guides peeled off and then just like that, it was out.

Inhale.

Exhale.

Whiney little cry.

it’s a girl!!!!

IMG_1715

And I sobbed and threw myself on her and her doctor, the only doctor I would ever want in the room with us at that point, put his hand on my shoulder and just held it there. I grabbed him in a huge hug and said you did it again! And then pretty much everyone in the room was sobbing because our respiratory tech knew that this was the first time I’d seen Kendall take her first breath and she said “you did it mom. you did it kendall”. So much joy and relief and praise and awesomeness in this room this morning I cannot capture it.

And then they were gone, and they had pulled the curtain and I just held my baby and sobbed. Cried it all out. Let the emotions of the past few weeks rack my body and let those tears flow and just held her and thanked God and told Kendall I was so so so proud of her and I loved her and i was so glad she was back.

I do not for one second take this lightly. i know far too many moms who have not gotten their babies back at the end of a long illness. i cried for them and their angel children who I am sure were watching over Kendall over these past couple weeks. I cried for Kendall and I cried for her sisters and I cried for her dad, grandparents, friends, family and thousands of you who have taken her into your hearts over the past couple of years, months, weeks.

And now we look onward and upward. We keep on keepin on.

IMG_1728

First up – new line placement tomorrow. I know a few of you were waiting for MRI results last night – and I honestly didn’t know if I would hear them. That report typically goes only to the surgeon who will do the surgery so he/she knows what she’s looking for. But this morning, after extubation, it was one of the first things that happened. The surgeon’s assistant came in and sat down with me and opened up the report on the computer and showed me the part where it said “upper extremity veins appear to be patent and normal functioning”. I don’t know if I can grasp for you the magnitude of those words. Patent (open/working). Not stenosed, not narrowed, not blocked by scar tissue. To say this is nothing short of a miracle would be to understate the case. This is beyond miraculous.  It does not guarantee that placement tomorrow will be “easy” because sometimes the battle is getting to those open veins. But do I believe that God has heard our prayers to open and restore some of those veins in her upper chest? Absolutely I do.  My God can move mountains and He can open up veins.
So tomorrow afternoon she will go down to surgery. Be reintubated. Hopefully be easily re-extubated. Hopefully not be in the amount of pain she usually is post-line placement (it requires a lot of pushing/pulling/tugging like you wouldn’t believe unless you’ve seen it happen.) We are trying to do a slow wean on her morphine that she has been on round the clock for over 2 weeks now (the drip started before she got super sick). 5 days of constant morphine has a high risk of withdrawal. 10 days has a nearly 100% guarantee of withdrawal. It is very likely that Kendall will need to go on methadone to ease her withdrawal symptoms.  But we will cross that bridge when we get there.

We are waiting on Infectious Disease team and Immunology Team to continue combing through her chart and coming up with a short term plan to go home on, as well as a long term maintenance plan for handling/preventing infections better.  We need to look deeper into her possible gall bladder issues and likely do a full abdominal CT still to make sure we aren’t missing anything in her gut that might explain the increased volatility of her translocation (when gut bacteria move into the bloodstream – the reason she has gotten so sick the last few months). We (Ben and I) have a lot of hard decisions to make about Kendall’s care from here. She will not be going home quite the same kid she was when she arrived here in July. But she WILL be going home, and for that there are not enough words to express my gratitude.

Today I am just soaking up her. Her little voice. Hearing the things come out that are so very much her, so very much the same little Kendall still in there, in her weak little body, her squeaky little voice. My heart is soaring today.

Thank you for being on this journey with us. It goes on from here~

 

t.

Back for the Broviac.

So.

We survived the week. My mini-meltdown of last week did eventually find resolution. No one was left behind, everyone made it to their respective places, my sanity and faith in humans and goodness was restored.

Karissa’s appointment. I’m not quite ready to talk about all that the details mean, IMG_4607 but the testing that she underwent last week at the appointment with the audiologist did confirm that there is indeed “ a problem” with Karissa’s processing of audible information. She “hears” things ok, but does not “listen” ok. You know on Charlie Brown where the teacher talks in a “wahhh,whaaa, wahhh whaaaaa” type of voice? That’s how Karissa hears in pretty much any situation where there is background noise. I mean, I KNEW all of this. And in some recessed corner of my brain, I knew she would probably one day be hit with this diagnosis, but to have it there in black and white on a report in front of you, to be handed a list of “how to help your child in the learning environment” tips for the teachers…ugh. It just hits a little harder than you think you’re prepared for. I mean, when she was neck deep in therapy at the age of 2, a therapist first brought up that she likely had “Central Auditory Processing Disorder”. It sounded like a nice way of saying she couldn’t process info correctly, and it seemed to fit.

Having the audiologist hand us that “official” diagnosis however was far different. Because I sat there in that little room, watching my beautiful baby girl with those huge headphones on her head try to follow the directions in the test. Try to focus on hearing the sentence in just her right ear while numbers were being whispered into the left one. I watched her go from a perky, energetic, leg-bouncing bundle of smiles into a limp, melty, strained, withdrawn, sad little girl, with hardly the energy left to sit in the chair upright by the end of the test. It was a dramatic change. One I was not ready for, really. We are going to need more followup with her neuropsych doctor, and will obviously need to meet with her teachers at school to discuss how to help her in a classroom setting (as you can imagine a room full of 3rd graders is not exactly “free of background noise”). When I emailed her teacher to give her a heads up that our conference time would likely not be enough (we get a 15 minute conference with her in two weeks), i got a phone call rather quickly from the teacher. We were able to discuss a few things right away, and her teacher brought up that she had also seen karissa do the “energy slump” in a dramatic fashion a few times. Clearly, we have a few things to tune up for her. But I am so relieved to have a teacher so willing to help her students thrive in the classroom.

We’ll get through that one like we always do. it won’t make it any easier to actually DEAL with Karissa’s cloud gathering, but at least we can be armed with more info. Figure out ways to help her succeed instead of feeling like we are all always picking up the forgotten pieces for her. Like i said at the beginning – there’s a lot of stuff to unpack from this new piece of baggage. It’s less about the diagnosis itself and more about how to deal with the unique special needs of another K. Last week was just not a good week to get the info. This week isn’t tons better, but by next week, i’ll have it all sorted out, just you watch!IMG_4722

Anyways – tomorrow morning I’ll be getting up bright and early to pack Kendall into the car for yet another trek up to milwaukee. Another lonely wait in the crazy waiting room. Another scar earned by my beautiful little girl. As far as surgeries go, this one is “easy”. We’ve been down this road plenty of times before. But for some reason I feel a sense of urgency to pray for God’s guidance of the surgeons hands, pray that her veins are open and strong enough to hold the line, pray that there are no crazy kendallisms thrown in that would throw this “easy” surgery for a loop. She is still making a recovery from the sepsis of last month. She has not slept well in a few days and is more tired than her usual tired. She quite likely has another nasty UTI brewing as she has battled lots of pain, a low-grade fever, and the most disgusting smelling urine you can even imagine in the past 48 hours. All of these things just conspire to make it a “less than ideal” situation for tomorrow’s surgery. This picture is of her going to bed the other nite, hooked up to all of her tubies – 3 IV lines for all her meds and tpn, G-tube to drain, J-tube feeds, urine drain tube (foley catheter), oxygen, pulse ox probe. She crosses her legs like that when the bladder spasms are super painful, and she will sleep like that almost all nite. She’s picking at her fingers because the skin is just peeling off of her fingers and toes, and causes more pain for her. (I have no idea why this is, I think it’s a micronutrient/metabolic thing, but not sure. Anyways – not much we do helps it, so she just deals.)

So – we need prayer. Lots of it. I’ve had the pre-op nurse tell me to pack a bag (actually she laughed out loud when i said that we normally get discharged within a few hours of this surgery), and even Ben reminded me that I better pack a bag. Any medical momma knows – if you pack a bag and have it in your car, you won’t have to stay. But if you don’t pack the bag, and you have nothing ready with you, chances are very good that you will be admitted. So i’ll pack two. Just to be OVERLY prepared so that the backwards superstitious magic we mama’s hold on to works the way it should. The big girls will be in good hands – their daddy’s. He was able to get his flight bumped back so he could be home with them all day. This will be huge for their emotional wellbeing. They are all extra crazy/clingy/emotional when i’m not there, when we have to go to milwaukee for any reason. I was so grateful for everyone who stepped up to help us last week – but would have felt bad hefting the entire emotional burden upon whomever had each of them. It’s not easy. None of this is. Some days i get really really really tired of juggling all that I do, and just want to run away, if even for only a few hours. But at the end of the day, I know we are all blessed. We have no need to complain, because we have so very much to be thankful for instead.

IMG_4739I’m already tired. And i still have to pack. And get everything ready for the morning because goodness knows i will not be the most coherent and organized at 6 am.

We were able to get her special magical “glass slippers” to complete her Cinderella ensemble a couple weeks ago. I’ve had them hidden since then, waiting to surprise her on Halloween. But you know what? I think if any little princess ever needed some glass slippers, tomorrow would be it. So i’m gonna let her wear them.

Bibbity- Bobbity-Boo, baby girl.

 

My team of “Terra Texters” – you know what to do. Send me the funniest, craziest, most ridiculous stuff you can think of during my time in the waiting room. I don’t get to answer them all – but I do read them all. And they help me not feel like the walls are closing in on me during the long lonely waits. She’s scheduled to go back at noon, start time of 12:30. If you want a more up to date time, check the Terra Talking Facebook Page.

Don’t Stop Believin’.

 

Terra.

Improvement At Last.

It is such an amazing thing to be able to write that we are FINALLY seeing some improvement for Kendall, instead of watching her get sicker and sicker!

Without boring you with too many details, here’s what we know:

All of the cultures we drew (special blood tests that allow them to put her blood in a petri dish and watch what “bugs” grow) from Edwards are all positive for growth, meaning she was not responding to the medications she was on there. She had three sets of cultures from her central line, and one set that they drew “peripherally” – all positive. The peripheral cultures were honestly what was most “shocking” because they were drawn after treatment had started, so they should have taken much longer to grow out, if at all. When they grew just as fast as the others, we knew she was headed for a not good situation.

When she was transferred here on Monday night, another set of cultures from her line was drawn, and those have SO FAR not grown anything. They are not considered officially negative until day 5, but having no growth so far is a very good sign. Last night she did not spike another fever, so no cultures were drawn last night, but they are going to be attempting soon to pull another set of peripheral cultures. This is going to be so many levels of fun i can’t even begin to describe it to you. The senior resident on the floor is well versed in Kendallisms, and is on the phone right now with the transport (helicopter) team begging them to come please try to get these labs off of Kendall’s peripheral veins. Her arm is still very bruised from the set of peripheral cultures they drew on sunday, where four nurses and two lab techs had to hold her down to get that blood drawn. I do not know where this child gets her feral strength from when she is so sick – but i’m kinda glad she has it. i think it’s a large part of why she is able to kick this horrid nasty septic infection to the curb.

so anyways – what was making her so sick. She is growing Klebsiella in her urine, which IMG_4564 made her very very very sick as a little baby. She is also growing StaphA, a variant that we had, up until an hour ago, thought could be possible MRSA (horrible infection to try to get rid of, as it is resistant to many things and requires lots of the big gun antibiotics to get rid of) in her blood, and her age old nemesis, candida albicans (yeast) in her blood. We were trying to kill the klebsiella before it too could enter her bloodstream, as that would have been very very bad. Pretty sure that has been accomplished as her urine from yesterday looks much better. All of this led to her teetering on the edge of “going septic”, which essentially  means “organ failure”. That all sounds really scary, and it very much is – but the good news is that Kendall is NOT septic. She was definitely having some scary trends towards that – her kidneys had essentially all but shut down, her liver was becoming very unhappy, she was in bone marrow suppression, headed towards DIC (think horror flick where blood pools everywhere), and was very much in a scary place. I don’t talk about how scared I am when I am really scared. I was really scared this past few days. But now I can say that we are making good progress, and while she isn’t out of the woods yet, she is definitely in a much better place.

She will beat these infections as she has in the past. Getting her line out was a huge part of that progress. If you’ve hung out around here for long, you know that bugs *heart* plastic things in the body, and they attach there and breed little buggy families and cause much general havoc and chaos. So getting the line that goes directly to her heart and thereby touches every single cell of her blood was important for her improvement. It was part of the reason we transferred up here to milwaukee, because when i asked the team at edwards how they planned to maintain access if we pulled her broviac, I got a blank stare. Not comforting. The team here KNOWS that access is of uber importance, and knows little missy’s penchant for blowing PIV’s like she’s a firework lighter. It really is not super fun to have to be up here away from my other girls – but seeing once again how awesomely responsive the team here is to Kendall’s craziness, it is reassuring.

I have been able to have many good talks to Kendall’s doctors. I am confident that she will come out of this stay in a much better position than she has been in for the past couple months. When she woke up this morning, she just had that sparkle back in her eye. She still doesn’t want to move a whole lot, and is very content to just lay in bed and watch a movie, occasionally play with some playdough she was given from child life. She can’t really sleep very well because of the overwhelming nausea. i’d show you pics of what “gut shutdown” looks like, but i don’t want to scare you. (and to all our friends who deal with “gut shutdown” on a daily basis, my deepest respect to you.) Kendall can put out some pretty nasty stuff on a daily basis, but the shutdown brought on by sepsis is really it’s own special brand of nasty. And she has some very intense nausea to go along with that. Luckily her GI is our attending this week, so he is authorizing the team to try lots of different things to keep her comfortable. This is SO very appreciated by me as usually i am having to beg/scream/yell to get her any relief beyond the minimal efforts they like to use. I am very optimistic that as soon as she makes a full recovery from this infection she will go back to her “baseline”, crappy as that is. It is still WORLDS better than what she has right now.

Complex Care (the doctors that essentially make sure that all the other “specialists” who work with Kendall don’t get tunnel-visioned on THEIR part of her body and work together as a team) has been a huge assistance with this stay too, and it is such a relief to have someone else who can be the support Kendall needs, so I can take a break from having to be momma bear 24-7. Kendall will probably likely be here through early next week. We need to ensure that this infection is WELL under control with more cultures (hoping for NEGATIVES!), tune up a few things in her care plan, and ensure that she will not need transfused or infused with blood or platelets. She’s kind of teetering on the edge of needing a transfusion right now, but we are trying to avoid one if at all possible. Kealey so sweetly told me she would give Kendall blood if she needed it. Heartbreaking what the other girls are going through right now. I’m so torn at times like this…needing to comfort them, needing to be with Kendall, needing to be a good wife to my husband…

I’m losing my train of thought….I actually DID get pretty good sleep last nite (for a hospital night), and I even had breakfast (coffee and a kit-kat) – so no lectures about that! Anyways – for those of you who wanted this info (because you think i’m mean for not getting kendall the big elmo balloon) – here is the link to the gift shop where you can order the big balloons for her yourself! I’m just kidding. Don’t get the big one! There is also a link on that page to send an e-card to Kendall’s room if you would like to do that! she is in W1105 and loves getting the mail from the volunteers! Thank you again to everyone who has helped keep me in stock with food/cokes! Or just keep me laughing with your craziness. Trying to explain to Ben how my friends had me rolling with laughter last nite….well let’s just say i gave up trying to explain it. Don’t forget that the honey boo boo finale is tonite!

Ok peeps – i am going to go see if any of my food is left in the family fridge…

i have a good post for you tonight. Ben wrote another post about his thoughts – you don’t want to miss it – so check back later!

 

peace out party people.

 

T.

Why Bees Should not Smoke Crack.

Alternatively titled: I think me and my girls are slightly high strung.

Ok first – watch.  turn the volume WAYYYYYYYY up. But not if you are at work or in any kind of environment where you need to stay quiet.

 

Now i’ll explain.

So – last nite, this crazy drunken bee meanders into our car via the sunroof. I try to swat it out – but its little crack-is-whack super sticky legs are like embedded into the felt and i’m not about to piss it off.

{Semi-random side story that has some bearing on why i am reluctant to beat said drunken honeybee out of my car: LAST WEEK on the way to dance, the worlds LARGEST YELLOWJACKET TRACKER JACKER FLYING BEAST OF CHAOS flies into the driver’s side window, and attaches itself to my ARM. Ok so i had a sweater on, but I could hear it VIBRATING when it rubbed its 8 inch long wings together. If you know me at all – you know I have an ungodly fear of flying things, things with wings, and things with wings that sting you.Also of deer, but that’s another story. Anyways – I was in the middle of a fricking forest preserve road (nowhere to stop for like 2 straight miles) so I get to the next stoplight and i’m all freaking out flinging my sweater around my head like a messed up Chinese fire-drill while some JA behind me is honking at me to pull up so he can turn and i’m like “it’s not MY responsibility to create a turn lane for your lazy {bottom} and i’m about to die of a bee sting!!!!!” And then the light turned green and i think the big thing flew away. At any rate, it stopped the earth shattering buzzing noise.}

Back to the present story – i was hesitant to piss this big bee off too much because I was not interested in getting stung. I also figured it would make it’s way out of the still open moon roof once the high wore off.

No dice.

I told the girls when we got home that the poor bee was probably dying and it was best to just  let it die in peace and we’d leave the windows open in the car and it would either die or fly out in the middle of the nite. So when Kealey reported that the bee was dead, I took her word for it. I had JUST opened the visor to make SURE it was dead when Kealey said “Karissa told me it was dead….” And the bee starts vigorously buzzing and crawling. This spawned a verbose reaction from my three oldest offspring in the backseat – and THAT is what i was trying to videotape – their whiney distrust of the inherent goodness of the bee and my ability to protect them from it’s stings. In the video you hear kealey going “but mommmmmmyyyyy – it’s not funnyyyyy!!!!”, as if I thought this was all a super fun joke. Which, it WAS funny – but not anything i was purposefully joking about.

Towards the end of the video, kaylen starts the screamfest, and karissa, kealey, and finally myself join in.

I was crying laughing watching the replay…. Like how I go from super cavalier videotaper to petrified “blair witch” participant?

 

So – that was one of the highlights of the day.

We also had Karissa’s neuropsych evaluation today. I get that neuropsych is a “new field” and relatively still trying to find it’s way in the navigation of the learning disability spectrum. Today’s appointment was basically just to go over some of the issues Karissa has been having academically, and see if there was concern of a learning disability, or if we just needed to tweak certain things about her learning style. She was referred to this doctor by the neurologist shextreme-201 saw after the MRI back in February (January? whenever – it’s been kind of a blur of the last few months!) Going in to this appointment, I had a lot of trepidation. I am not a huge fan of what I feel is the over-diagnosis of ADD/ADHD type issues, and i am CERTAINLY not a fan of medicating kids for behavioral issues that MAY have a basis solely in needing more parental involvement/follow-through/consistency. (Please hear that i am not saying every child with ADHD doesn’t need medication – I know a lot of kids who DO need it and for whom functional life would not happen without those meds. I just feel like our society in general has started to rely on meds to do our parenting for us. /rant. Off soapbox.) Anyways – I went to the appointment hoping he might have some good help for what is certainly frustrating in trying to get Karissa to get a wiggle on/keep up with her class/stay awake most days, but not really hoping for much.

And while i’m not really finished “processing” a lot of what he said, I can say that he thinks there is a problem, and that we can fix it. Or at least, we can hope to improve things for her enough that a lot of the other issues are brought under better control. We won’t really know more about what that plan is until a few other pieces of the puzzle are put together, including:

– the actual neuropsych testing. Kind of like ISAT tests that you take in school – but 6 hours worth. SIX. HOURS. The ONLY thing i’ve ever seen karissa do for six hours is dance. And sleep. I hope they are fun tests! They will be split up over a few days at least. But we are waiting for insurance approval for this part. (they approved 4 hours, but the dr thinks that won’t be quite enough.)

– Updated vision testing. Karissa has been becoming SUPER dependent on her glasses for everything (even though originally they were only supposed to help with reading the whiteboard at school, distance type things), and sometimes even saying that she still can’t see even with her glasses on. He was concerned about the rather drastic decline her eyesight has taken and wants the neurologist to go back over her MRI with a fine-toothed comb to make sure we didn’t miss anything.

– Updated Hearing tests – possibly an ABR. As part of what he feels her diagnosis is, he is concerned with “auditory processing” – but given her almost complete deafness the first couple years of her life with the repeated booth test failures and the recurrent ear infections and the speech delays – he wants to make sure there isn’t a “functional” issue on top of the processing.

– Pending a conference call with the ped and the neuro, he is thinking she needs a 24 hour ambulatory EEG to make sure she isn’t having seizures. I don’t think she is in any way – i call them zone outs or “brownouts” – but with this diagnosis, according to him, there is reduced blood flow to part of the brain (oversimplified explanation – she isn’t having brain cell necrosis or anything – it just doesn’t flow “good”, causes less neurons to fire, or more firing, or something – my eyes had glazed over by this point and i myself was in a “brownout”!) – but because of this, he wants to make sure she isn’t exhibiting ANY sign of it being electrical in nature. And when i say brownout – you ever have your computer just stop computing, and the little spinny wheel just spins and spins but nothing is happening in the background? It’s kind of like your computer has to catch up with everything you’ve just told it to do – THAT is what karissa does. She’ll be talking talking talking – every.single.thought.that.crosses.her.mind. – and then stop…..We all do it sometimes. She’s just been doing it a lot more lately. And even though she says she “likes to make her lip twitch” when it’s happening, i think it is probably a smart idea to get it checked out. Pain in the tookus for sure, along with everything else.

BUT – at the end of the day, if this helps us all understand and help support her a little better, it will be worth it.

This does not mean that we think she needs an “IEP” right now. We don’t know WHAT it means or what she will need. But we know it’s more than what she gets right now, so that’s what we are trying to figure out.  Once we have more information to work with, i’ll definitely put more info here. For now, we are working on ways to help her learn to be more indepently functional. She relies a lot on ME to get her cues for “what’s next”, and in my absence, she is heavily relying on Kealey. This is not fair to either of them – so we will start with some simple tasks for her/boardmaker type stuff to get her to understand her own schedule.

It is definitely a lot to process, try to sort through, try to wrap my mommy’s heart around. To me, she’s just Karissa: flighty, forgetful, chatterboxy-in-a-makes-no-logical-sense kind of way, beautiful princess dancer baby boogerton. I’ll never pigeonhole her or put her in a box. Try to understand what makes her tick a little better so i can watch her wings grow? You betcha. But never, ever, ever “labelled”.

But enough whining about this – we got surgery for the little one that requires an early morning drive. Which reminds me i have nowhere for the big girls to go yet – their bus doesn’t come til 8:30 and we need to leave by 7….dangit. Ok i’ll work on that! If you are the praying kind – please pray for little missy around noon-ish. Like I said last week – this is a pretty “simple” surgery, but still. I hate sitting in the waiting room by myself. I can’t distract myself good enough. So maybe leave me a comment here with a joke or a mind bender or something so i can read them tomorrow and not worry. I’m sure it’s not worry-worthy. It just never gets easier, handing your baby off to a bunch of men and women in OR scrubs, hoping the one they bring you back is a slightly improved version of the one you handed over, and that she wakes up in a normal way, not the drug-induced psycho-terror version of a Stephen King novel character.

So i’ll see you on the flipside party people.

Interesting side note – I was psychoanalyzed by the psychologist today. He noticed that I giggled a lot. Said that it was a coping mechanism for a chaotic life. I said “you’re either laughin’ or you’re cryin’”. He looked at me and said I was doing spectacular. I almost started crying. So I giggled again.

Hope you laugh watching the video above.

love and light~

(that’s for you PDL girlies!)

 

Terra

It’s been too long…

To do a really proper catch up. So i’ll just try to hit the current highlights for now and catch up later!

Let’s start with the easy ones first:IMG_3656

 

Kealey – doing fine and great – as usual! Really making huge strides in dance and school – when did she grow up so much? No worries on this one, thank God, because I don’t know what i’d do without her quiet calming strength.

Kaylen – also doing great! She’s been complaining of tummy pain more and more often these last few weeks, and even requesting enema’s at a few different times as they are the only thing to help relieve the pain and pressure (I know, strange, right?) – so she will have an appointment with the constipation clinic team up in milwaukee in a few weeks. We give her a lot of miralax and ex-lax already to try to keep things moving along, but hopefully they will have a little more insight for us about how to help her feel better. Preschool will be done in a few weeks and she is SO EXCITED for her birthday (in July – some of you may or may not have received your verbal invite to her pool party already? For IMG_3601 the record, we have a blow up pool that is not even put up yet, but whatevs) and then to start Kindergarten next August.

Karissa – *deep breath* – she’s karissa, what can i say? Had a “tie up the loose ends” appointment with her pediatrician last week due to her taking a leave of absence this summer, and the school breathing down my neck to get a letter to address some school concerns. Apparently when we saw the neurologist in February as part of the MRI followup for the tethered cord concern, he wrote this thing called a “summary letter” (note my heavy sarcasm here). Well the letter never made it to us – and everyone else assumed the other doc had spoken with us. Long story short, we are being highly encouraged to run the mito testing on karissa sooner than later, followup with a neuropsychologist for academic testing (to see if she has an actual learning disability or something along the lines of ADD/ADHD something like that), and we are supposed to followup with a neurosurgeon regarding the tumor that was found on her spine on the MRI. While I am glad that all of these things are taking place so that we can know for sure what is going on on all fronts, it was a lot to process last week. Dr. Natalie also ordered an abdominal x-ray for Karissa due to some “incontinence” issues picking up in frequency and intensity. Sure enough Karissa is full of sh poop and we have to start a “cleanout” on her. (Remember that old Saturday Nite Live skit called “super colon blow”? Yeah, that.) This should be all kinds of fun for everyone involved. I’m really looking forward to it, as is she I’m sure.  We did get the note for school (she is having a hypoglycemic type crash after lunch every day so she has to start having a protein based snack in between recess and their regular snack time).

What all the rest of it will mean I have no idea. The neuropsych testing should help point us in a direction as far as her school issues go (she will likely need to have an IEP put into place next year due to some strugglesIMG_3666 she is having academically) – but we will wait to see how that appointment goes before we do anything, especially since there’s only 3 weeks left of school! Hopefully the “cleanout” is successful and helps resolve some of her other issues. She is also seeing the urologist up in milwaukee when we are there for marathon appointment day in a couple weeks to see if they can help us come up with a better plan for the issues/pain she is having. We will likely have the mito testing labwork pulled at that time too. (We haven’t done it already because a. – it’s better when done under stress like a vomiting type of illness, and b. – i don’t trust any local labs farther than i can throw them. So now we will just have it done up at childrens – which karissa has thus far not had reason to be at, but will now. got it? good.)

And last but not least – Miss Kendall – oh where to begin trying to catch up with this one???

SUPER LONG story made very short – we have been dealing with what appears to be a “site infection” where her broviac (IV) line enters the skin on her chest. It has been very painful for her for the last two weeks, which got a teeny bit better when she started IV antibiotics last week. The culture of the pus that is leaking/oozing out around IMG_3644 the site grew MRSA (a resistant type of staph infection that we all probably carry around on our skin all the time, but until you have a deep open wound, you never know it). The ER that cultured it two weeks ago didn’t feel the need to let us know that it was growing (they determined it was a contaminant). However, given how symptomatic she was, the growing redness and hotness around the site, and the fact that you couldn’t even pretend like you were going to lift her shirt up to look at it without her flipping out all convinced her docs that we should probably treat it seriously (ya think?!?!?!? I mean, hey, it’s only got a DIRECT ZIP LINE into her heart/bloodstream. Sure, let’s go ahead and let that fester for a couple more weeks while we twiddle our thumbs. Great plan.)

And while we are very very very lucky that it was actually resistant to ONE drug that is an 8 hour dosing, it is still extremely tiring to do IV antibiotics at home. For the uninitiated, it requires about an hour of set up/prep work, time for the medicine to run in, and take off/cap. This is all good and fine for the 8 am and 4 pm dose, but man, that midnite dose is a doozy. And JUST when I could see the finish line in sight – her tpn nurse took a closer look at it and determined that it is not, in fact, getting any better. We had a very very very long day at Milwaukee last week doing a lot of testing to determine if there was a crack or leak in the line causing the oozing, going over her dressing protocol (the sterile stickers we have to put on her site to protect it every week), analyzing the site, having four other doctors and nurses analyze the site (she was a HUGE fan of that let me tell you), getting x-rays and fluoroscopy and labwork. Did i mention it was a very long day?

So now we will start one more week of antibiotics and then go back up to milwaukee next IMG_3669 Thursday for an outpatient surgery to have her line moved. Basically, you only have a finite amount of veins that are large enough to be used for “central access”. Once they have scarred over, they are unusable. Once you’re out, you’re out. Kendall has managed to keep this line in for almost 9 months, which is AWESOME in light of the cycling infections we were dealing with last spring. Up to this point, the surgeons have been unsuccessful in finding any access on her left side – we aren’t sure if the veins are just underdeveloped on that side and she might GROW into access, or if they are just unusable period. But right now, we have half the available number of spots left for her to have access. Of course the hope is that she grows out of her need to even have the access sooner than later – but right now, she needs this line. We need this spot. So her surgeon is going to go in and keep the main catheter in the same spot, but tunnel it back under her skin to come out at a different spot on her chest to give this infection time to heal. He is pretty confident that this will solve the immediate problem – but he is hesitant to do it until this current infection is cleared up. However, her line is sliding ever so slowly out of place, millimeter by millimeter. The “cuff” (a thicker part of the line that ideally has skin growing over it to anchor it in place in the chest wall tissue) is now at the entry site (pulling all the internal tissue it was connected to with it), compounding the problems of her irritated and infected skin. Once that pulls out, the rest could easily slide out, and we would risk being able to use this same vein. I’m considering ordering a pediatric strait jacket to keep her immobilized for the next 7 days.  (i’m only kidding.) (kind of)

Hopefully it is an outpatient procedure. It is scheduled as one right now, but her last two broviac placements have taken roughly 3 times longer than they do for the “average” patient, so i’m kind of in a toss up.Hopefully since this isn’t a full “hunt and find” mission it really will be the quick in and out they are supposed to be.

She has also been having a lot more issues with her bladder/ability to pee. I won’t get too into the details but i’ll say it’s definitely not normal, makes for a LOT of laundry, and leaves her dealing with a lot of pain. She has had this issue her whole life, but it’s definitely picked up in intensity over the past couple of months. Hopefully on marathon appointment day they can help come up with a better plan, cause watching her double over in pain and knowing the only way through that pain is more pain (catheterizing her) – well, between that and the fear of her broviac sliding out, i’m on track to become addicted to a controlled substance PDQ. There’s so much more that is actually going on – but the bottom line is that overall, she’s doing “good”. The average observer on the average day would not see all that she endures, would not notice that her binky is in her mouth because she is grinding her teeth in pain otherwise, would not see her holding her tummy under her jacket, would not see the meltdown crash that comes after she’s held it together on the rare outing to the store or park. And that’s good. I’m proud of my babies her strength and resilience. But every once in a while, i’d just really love to give her a break from it all. Be able to relieve her pain for a few hours.

Me and Ben – amazingly – have managed to have one whole month where neither of us got some crazy random injury. I know. Be proud. We’ve lost one cat, gained one dog (temporarily! we aren’t that crazy), and in general are just keepin’ on truckin’.

HOpefully i’ll be able to get more details/go back and tell more of the catchup story over the next few days. And i can’t believe I missed my own 5 year bloggiversary! I’ll definitely have to go back and celebrate that!

Thanks for comin back to check on us~

 

T-crest

Related Posts Plugin for WordPress, Blogger...