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

unexpected.

you think sometimes that you are prepared for life. Prepared for the curveballs that may or may not come your way. You have emergency bags or emergency plans or emergency numbers in safe places, places you are prepared to get to in case something unexpected comes up. And this is all good and fine and sometimes it comes in handy and you avert the big crisis because you prepared for the unexpected.

But sometimes, even if you think you are prepared for the worst case scenario, it still creeps up on you at 4 pm on a random rainy tuesday afternoon in October.

Maybe you are sitting in the lobby of the hospital and you hear a code called in the area your child is having surgery in and you just know it was her. Maybe you run up to the waiting room where the desk person is frantically searching for you and your name is being paged overhead simultaneously and the doctor is being paged simultaneously and you try to hold yourself together as you walk to the elevators. And you tell yourself everything is fine as you walk into the unit and you even believe it for half a second before you round the corner and see your child’s code light on outside her room and many many people around her room and a doctor intercepts you halfway down the hallway and pulls you into a private room and invites you to sit down.

It is then that you know that none of your emergency preparedness actions are going to be enough. Whatever is about to come out of the doctors mouth is going to be so unexpected that it will hit you in the gut with a ferocity with which you will never be prepared for.

And then the doctor tells you essentially that your child died on the table, right below his hands, but it’s ok because it was only for a minute or three and she is ok now, she is back, and everything is ok. But he is shaken up and you find yourself trying to comfort him because the actual reality of his words haven’t sunk in to your brain yet, maybe you don’t want them to sink in, and because surely he couldn’t really mean YOUR child he must be confused. But he takes you by the arm and walks you to your child’s room because she IS awake-ish and is moaning your name and has people surrounding her, holding oxygen masks above her face because the cannula taped into her nose is at max capacity and still isn’t giving her enough oxygen to keep her vitals stable. and you will go to her, this child of yours who likes to defy odds and bring new meaning to the word “unexpected” and you fall on her and hold her and tell her it’s ok, it’s all ok, you’re here now.

The next few hours might come as a blur to you. you have to tell everyone that she is ok but that she is still not “stable”…

This is unexpected.

it was supposed to be an easy surgery. A quick stay.

And now it’s all topsy turvy and there really aren’t any answers and you have no idea what will happen in the next few minutes or hours or days.
Unexpected.

i am not even sure I have fully processed for myself what happened yesterday. Her nurses tell me it was scary, and that it’s ok that i’m scared and nervous and unsure of what happened or what comes next. But mostly I just look at her and I’m glad she’s still here. Still sassy. Still fighting, like she does best. I have been fighting some kind of wicked cold/sinus/viral crappiness and i think it’s almost a blessing. My head is so full of snot that it’s hard to think through it all, and that’s probably a good thing.

What I do “know” right now: The running belief is that she had a massive pulmonary embolism. Likely a clot or part of a clot dislodged from somewhere in her body and momentarily blocked her pulmonary arteries. This caused her to go into v-tach – ventricular tachycardia. A crazy erratic heartbeat that was not in any kind of rhythm and was doing essentially nothing to pump blood. As a result her blood pressure plummeted to nothing and her sats took a major nosedive to nothingsville.  I am told that we are extremely lucky that the anesthesiologist on her case is one of the only men in the entire state who could have brought her back so quickly and assuredly. His skillset happens to be best suited to cases where this kind of thing is a likely possibility.
So they stabilized her. Brought her upstairs still very much needing support. I am shocked that they extubated her but I think the main goal was to get her out of the OR and up to the capable hands of her ICU team who knows her.
We aren’t POSITIVE that it was a clot. It could have been air, it could have been her body just reacting to the anesthesia, it could have been just the direction of the moon and wind. Even though we don’t know the reason why, or have any real reassurance that it won’t happen again, we have her back. She is stable. And that is as good as we can ask for right now. It is good enough.
We have imaged the likely places a clot might be hiding out, and see none. she is receiving a large dose of blood thinning medication every day. Her pain from the sepsis seems to be being better controlled, and we are so happy for that. She was very very sick, sicker than i think any of us realized while she was going through it even. And we are looking at a pretty long recovery, full of ups and downs. Her doctors tell us that we shouldn’t feel discouraged, that her baseline may eventually return to normal. That  this doesn’t mean she’s lost major ground. It just means right now, she’s recovering. Right now, the unexpected will continue to throw us for loops. Right now, stable is as good as it gets.

She does have her new line in. They were able to complete inserting that. Her old crusty painful picc is removed. She is cleared to go home in the morning.
So homeward we will go. For hopefully at least the four weeks we would normally be home before returning for IVIG in November. We don’t exactly know what else to expect, but maybe that’s overrated anyways.
I’m looking forward to getting home, into a good schedule again. One of her crazy antibiotics is done, so her med schedule is DRASTICALLY reduced. This means we get some sleep at nights now!  We will look to get her back into school in the next week or so as she proves her endurance to us a little bit more. We have  Halloween costumes to get set for all four girls and I owe Kaylen a birthday party still (poor middle child always gets left out….), and then it will be Kendall’s birthday and then it will be CHRISTMAS.

And then time just flies.

So I’m going to wrap this up because the coughing is overtaking me and my head is still full of snot and I just really really really want to sleep for about a week. Or a month.

i hope this post makes sense. Thanks for trying to read it anyways~

 

peace out party people.

~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.

You will learn.

I was overwhelmed at the response to last week’s emotional outpouring of my thoughts regarding being/becoming a mom to a child with special needs. It felt cathartic to write some of that stuff – stuff that I usually keep stuffed in, but comes out occasionally. I decided maybe I should try to get some more of it out. If it helps other moms in their journey, then I WANT to get it out. I’ve “met” some amazing new people this week because of that post, and I hope that those friendships continue to develop, that that post continues to touch people’s hearts. So here you go – more of the stuff I stuff inside. As one of those friends goes in for some pretty major surgery this week, I thought I’d talk a little about what you will learn when your baby goes to surgery.

 

You think you know what it’s like, because you have seen it on TV before.

Or because you have handed your baby off for a 20 minute procedure involving putting teeny tubes in their ears.

Or because your cousin’s babysitter’s dog-walker’s son once had to have surgery and you heard all about that.

But nothing will prepare you for the first time (or any time) you have to hand off your baby to a team of gowned up doctors and nurses and go wait in “family surgery waiting area”.

Here is what you will need to know:

You will not be able to sign the consent forms. You know how to write your name, and you can see IMG_4387 the line on the paper, and your hand FEELs like it should be responding to the command to “sign here please”…but it won’t. You will see the surgery listed out in cold medical terms at the top of the sheet, and the cute little teenager who claims to be a “resident doctor” is telling you that it just details what is going on and some of the common risks and they need you to sign it as consent and permission to perform that surgery – but still, your hand won’t work. You cannot do it. You will have a mental block against being the one who signs the paper that made it ok to make a hole in your baby’s stomach/chest/neck/head. You will not be able to be the one who says – yes, it is ok for you to put my baby through all of this pain while I sit out here thinking of anything else but what is going on in there. Your husband will notice the drops of your tears on the paper and your hand shaking above that paper and he will take it from you and sign his name instead. He will know without you saying that no matter what that paper ever says, you are unable to sign it.

You will learn that nothing is ever set in stone until the anesthesiologist comes in. You will learn that these smartest of the smart doctors are the ones who REALLY hold your child’s life in their hands. You will learn that they speak a whole other language from what the surgeon speaks, and you will have to learn this language. It involves a lot of big words like “malignant hyperthermia” and “sevoflurane”, and one day you will actually find yourself having a conversation with an anesthesiologist regarding the use of “TIVA vs propofol for induction” and you will wonder what happened to your real life. You beg and hope and plead that this doctor and his team really does know the best mixture of medications for your child whose body likes to do crazy things when its under GA (general anesthesia), but ultimately, you will learn that you have to trust. Just trust. You will also learn that nobody believes you about your child’s extreme tolerance of the “happy juice” medicine until they are muttering under their breaths about how this is enough to make a horse fall over giggling pushing in their fifth vial of medicine and you will have a brief moment of smugness at knowing more than an anesthesiologist.

You will learn that you don’t really want to walk back to the OR with your baby. It is better to leave them waving happily in the crib while the nurses wheel her down the hallway. You will walk out that door with a firm determination to not look back and to not let the tears fall, not yet, because you will not leave her with a view of a crying mommy. You will be strong. You will force your brain to think about food because you will have likely been “NPO” (nothing to eat) along with your child, and you have 4 texts on your phone asking if you’ve eaten yet (from your mother who will always be your mother and worried about you eating, and from your friends who know your routine) and your husband (if he is there, cause sometimes he can’t be) – but still you hear the voices telling you to go eat. So you do. Because you know you will be in a bad place without something in your stomach, and because it kills some time that you don’t have to be in “family surgical waiting area”.

You will go and get your food and you will bring it back to the area they have set aside for the families waiting for their children in surgery. You will realize this area is it’s own little microcosm of society. Strange things happen in that waiting area. People wait. And waiting does weird things to people. People get good news and people get bad news and their reactions are palpable. Some people bring in entire camps of people to wait with them. And others huddle in their coats not wanting to talk to or look at anyone else. Some people raid the vending machines like a zombie apocalypse has just occurred and you will want to yell at them because they took the last five packs of plain m&m’s and all you really effin wanted was a pack of stupid plain m&m’s. Some people feel the need to call every. single. person. in their contact list and loudly explain to them every. single. detail. of what their child’s surgery is going to entail. You will learn to spot those people from a mile away and set up your own camp far far away. you will also learn to bring headphones to block out this information.

You will learn that you can pack a hundred million jillion things to do to entertain yourself or occupy your mind but you will not be able to focus on a thing. your brain will still be stuck willing the anesthesiologist to please do a good job and praying with every fiber of your being for the surgeon to do a good job and for your baby to be sleeping peacefully and having good drug induced dreams. People will text you and want updates and you won’t have any info to update them with and you will feel like throwing your phone against the wall because you’d like an effing update too but the nurse hasn’t called your name yet. your really good friends will know that you want to have funny stories texted to you during the wait and you will also get random insane texts from your random insane friends, and you will crack a smile, not so much at their goofy jokes, but at the fact that your friends know you and love you and know what you need.

you will learn that the surgeon will give you an estimate of time not unlike the cable guy. “It should take me between 45 minutes and 4 hours to complete my work, and then of course getting her woken up and settled in the PACU.” And you want to ask if he can estimate any closer between that range, but you know it’s futile anyways because your child ROUTINELY will take double whatever time they estimate. It’s just who she is.

You will learn that you hate knowing which chairs are the best in this family waiting room. No one should spend enough time in the family surgical waiting area to have a “favorite” chair/couch/tv. You will again wonder how you ended up here. And you will have to go play a stupid game like “angry birds” in order to get your brain off that crazy track of thinking. And you will find yourself unnervingly frustrated at the stupid pigs in the game that just won’t be crushed by the stupid falling logs. You won’t talk a whole lot in the waiting area. Even if you have someone with you, which isn’t always, you won’t feel like talking. in the same way that your hand stopped working while trying to sign the papers, your mouth feels like it won’t work. Or if it does that only swear words will come out. so you keep it shut.

And you will learn that JUST when you start to feel desperate for information, that is when they will call you “parents of Kendall….. parents of Kendall…the doctor will see you in consultation B”. And you will breathe a huge sigh of relief and run to the consultation room to hear how your child has done.

She is ok, it all went ok. You breathe again. You cannot wait to see her again.  You scrub your hands with the antibacterial sanitizer and you go to the pacu area and you can hear her/smell her/sense her from the doorway before the nurse has even pointed you in the right direction and you are there, at her bedside, holding her hand, letting the tears come finally because she’s all done and she’s in pain and she can’t even open her eyes against all that her little body is fighting and you want to scoop her up and hold her but you know that would be more painful and so you let her sleep and you put your face next to hers and tell her “mommy’s here i’m right here you did such a good job baby girl mommy loves you”.

and her fingers will curl around yours like they have done since she was first born and she will know you are there and she will relax because she knows that if you are there then everything will be ok. And you promise her that you will make it all be ok because you are her mommy and that is your job.

 

and that is what you will learn about surgery.

You will be ok through this though. Because you always are.

Movin’ on up.

See what I did there??? With the title? It’s kind of a play on words. Cause, you know, Sherman Helmsley passing away and the Jeffersons theme song, and also cause we are hoping to “move on up” to a regular floor (not the PICU) and Kendall’s recovery is moving up…. you get it? no? you don’t? just me? {nervous laughter}…..IMG_4114

ok nevermind.

Anyways –

We should be getting transferred up to the floor (as opposed to the “unit”, PICU) relatively soon. Kendall is “stable and controlled” with regard to her issues and pain – but the team is still treading lightly, knowing that she is still needing a lot of medicinal support to keep her that way. She still has the PCA (morphine pump) turned on – but we are trying to add in more oral pain meds (meds into her tube – because that’s how we give pain meds at home) and see if we can wean down the use of that pump.

As a quick catch up for those of you who did not see all the facebook posts last nite – the surgery itself went great, he was successful at creating a tunnel for her bladder and preserving blood supply to the entire site, and feels confident that this will help to greatly alleviate her pain from the retention she was having. It will be about a month of recovery with the drains and extra skin buttons in place and for the scars to all heal over – but after that time she should be up and running like usual! So praise God for that!

After we came up to the PICU, she was still very conked out, until we tried to adjust all of her tubes and wires. She was absolutely through the roof with pain, and seeing how horrid her surgical site looked, I had no doubt that it was extremely painful for her to be moved a millimeter. They were SO awesomely responsive here in the PICU IMG_4111 though – ordering extra meds, pushing them quickly, getting her comfortable again no matter what. And that’s not to say that we don’t get good care up on our regular floor, but i was AMAZED at the level of care and immediate response that came from the PICU team. Good thing too since about an hour after getting her settled from that first event, she started dropping her blood pressure, violently vomiting (which is quite a sight to see from a kid who has her stomach wrapped around her esophagus to prevent such a thing from happening), and in general having a really tough go at things. After one of these episodes we noticed that she was bleeding a lot from around one of the incisions, but the surgeon packed more gauze around it and proclaimed it still good. Still not a comforting site for a momma though. Finally at around 2 we were able to get back on top of the pain and vomiting and keep her blood pressure up at an acceptable level – and I crashed. I had planned on getting up every hour to check her and press her pain pump again – but the nurse set it to a bigger bolus and she took care of it til the morning team came on duty and i actually got 4 straight hours of SLEEP. which I NEVER get in the hospital because on the floor, the nurses are usually busy with 5-6 other patients all nite and I end up handling most of Kendall’s nite time care. It was such a nice thing to have it all under control all night long! All of the nurses here keep saying how shocked they are that the floor never sends her to them (on the unit) because her needs are pretty extensive for what they can handle – and I tell them that its because I end up doing most of it! (or ben when he has hospital duty! or my aunt who got roped into spending the nite one time!)

But i’ll tell you something – you ever need a hefty dose of perspective? come hang out in a Peds ICU sometime. It has given even ME some healthy perspective about Kendall’s care/situation. I am anxious to get out of this unit and onto a floor because I understand that the really sick kids are here on this unit. I want to get back to the regular sick kids place. where they make you wait for hours for a single dose of tylenol and no one ever has the right supplies your kid needs for her central line. where alarms aren’t flashing on 4 monitors for other kids who are coding in the room next to yours. where there aren’t machines covering every square inch of space in the little rooms. Where they are able to hide medical equipment in nice wood veneer cabinets and not have it looming large, handy and QUICKLY ACCESSIBLE by your child’s bedside in case the unthinkable goes down. It has been wonderful to have the support that Kendall needed when she needed it – but I am ready to get back to our little microcosm of “regular sick”.

Kendall is currently trying to take a nap – but its hard when there’s a TV screen that is movable to being literally 6 inches away from your face with Cinderella playing on it.  (if you look in the top pic, you’ll see the tv screen on a swivel arm in the top left corner of the pic – it moves. It is currently VERY close to her head.) I’m glad to see some of her personality peeking through the pain. We were able to get the bed a little elevated and give her some meds through her J-tube. These are all encouraging signs that she is moving in the right direction in her typical little soldier pressing forward way. There is some very hush-hush murmurs about her possibly being able to get out tomorrow nite IF we can keep her pain under control without the morphine pump. If not tomorrow then Saturday should be the day. It is going to be a crazy week at home. We are hopefully going to be very covered with nursing help as she will still have a lot of tubes and drains and lines coming out of both God-placed and man-made holes in her body.

FOR THOSE WHO HAVE ASKED: (you know I hate feeling like i’m asking for help ever…) But if you have asked – up here in milwaukee, I am craving a few specific things that I’m not even sure they have up here. I know some have asked on FB, some via text, some I don’t even remember! Do they have a buffalo wild wings up here? Chick Fil A yet? If you were one of the ones who volunteered to bring me food stuffs – text me please! 630.803.3189 (and if that doesn’t apply to you, then please don’t worry about it!) Our visitors are restricted while we are on the unit, but once we are up to the floor, I think we can open visitors back up (family that claims me as a relative –this means YOU!!!)

Once we come home – oh who knows? I do know that one thing we will be in need of is DIAPERS. IMG_4116 And I know that this seems odd – but once her drains come out, she will be leaking into diapers. Any size, any kind. With all of these medicaid changes, she no longer qualifies for medical diapers until she turns 4. And lemme tell you – this kid goes through a LOT of diapers. I’ll spare you details – but with a non functional bladder and a non functional GI tract – it makes for some crazy messes. I’m not asking you to go buy us diapers – I’m only saying if you happen to be able to potty train your kid and still have like half a pack leftover, or if you go up to the next size and have some leftovers – we will gladly take any and all donations for the next couple of weeks! Aside from that I can’t think of much right now. You’re all so great all the time – I just value your friendship and support and random crazy texts!

Ok i’m starting to get one of those “i don’t think i’ve eaten all day” headaches so i’m going to go raid the vending machines.

I’ll try to update the FB page for the blog and/or do a blog update later once we are hopefully moved on up to the floor! I dare you to not have that song get stuck in your head now…

love you all – thank you SO much for the prayers all nite – I am quite sure that is why things calmed down enough for me to get sleep!

 

peace out party people –

 

T-crest.

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

Recuperating.

Slowly but surely – we are in a state of recuperation here.

Ben is home and still has a pretty puffy hand, but is recuperating from the effects of “sleeping” on a hospital bed for two nites, and fighting a nasty infection. Kaylen is definitely attempting to recuperate from her surgery yesterday. I am recuperating from…life. the big girls are recuperating from once again having their lives and schedules thrown upside down, and kendall is just truckin’ along!

image Poor Kaylen – I mean, i knew it was going to be rough. but having head knowledge of how much pain your child will be in, and actually trying to hold and comfort a baby who has NO IDEA why everything hurts so badly and just wants you to fix it are two polarly opposite concepts. She is understandably in a lot of pain from having her extra-large tonsils and large adenoids removed. I was actually shocked as i looked in there for the first time post-op – it was just so HUGE in there without all that swollen nasty tissue! Poor baby – she must have been hurting for so long for as big as they were.

So anyways, our day today has been spent trying to convince a hurting 4 year old that drinking something – anything – will not hurt that bad and will help her feel better. I’m not sure if this is true – but they tell me this is what i am supposed to do, so I do it. It is heartbreaking to watch her fight to get down the teeniest amounts of water or juice, and to talk longingly about when she can eat food again. I’m not kidding, this is the kid who usually has had three meals before I’ve even made my first cup of coffee for the day. she eats non-frigging-stop. Snack QUEEN. I am sure she feels hungry – but knows she just cannot get it down right now. As long as we can stay on top of keeping her hydrated, I think we will be doing good. But even that, I’m questioning right now. She had MAYBE 6 total ounces of fluid today, and most of that she had to work at to get it down, and then fought for a while retching after she did finally get it down. She still has a teeny fever even after taking the tylenol/codeine combo, which she is getting every four hours on the dot, which is also very hard to get into her because she is NOt interested in swallowing anything.

At this point, it will be awesome if we can muddle through this without having to go back in for some IV fluids. I feel so bad for her though….no good solutions – just gotta push through.

So push through we will!

We got a lot of fun stuff coming up this weekend (and even more fun stuff NEXT weekend with the Hope For Kendall benefit!!!) and I want EVERYONE to be there and be happy and be healthy.

 

Thanks for stopping by~

 

terra.

Relief. Or maybe not.

JUST as I was about to sit down and blog about Kaylen’s surgery scheduled for tomorrow morning to have her tonsils and adenoids removed, the pre-op nurse called to tell me that the head anesthesiologist was not comfortable with our family history (Kendall’s history!) of anesthesia reactions, so he would not allow her procedure to be done at their facility. (basically if they use the wrong mix of medications, kendall ends up in the PICU not wanting to breathe on her own and her body goes into metabolic-disco mode trying to stabilize itself. It ain’t pretty. Luckily CHW now has a two inch thick file on what NOT to use, and they have her down to a science.) turns out that kaylen’s procedures (and karissa’s a couple weeks ago) were NOT at CHW, so they don’t have the family history in the record.

there are so many paths of frustration that I could spout about regarding this that I hardly know jan12-104 where to start. The fact that I tried to point out to her doctor last week that I’d like more info regarding how long she would be under so we could make better decisions about her anesthesia – or the fact that I asked the nurse if the surgery center would be equipped to handle the anesthesia issues we have run into in the past (and was told absolutely!), or the fact that ANY TIME I bring up a concern about anesthesia and that I’m not trying to be a psycho about it, but I’d really prefer to never have to watch another kid go through what i’ve watched kendall go through ever again, I am somehow the crazy one. Until a real anesthesiologist reviews the notes. And then all of a sudden its a fricking five alarm fire again.

But at the end of the day, I am grateful that they ARE taking the concerns seriously, and that Kaylen will be very protected during her procedure. I just hope it is soon – SOOONNNNNN do you hear me?!?!?!? The 3-4 nightly wakings from her, the flopping around in pain from her legs and arms and belly and throat and head, the behavior issues that are becoming more and more out of control – it is wearing on us all. I would never have guessed the extent of the problems that “sleep issues” could cause – not only to the one with the sleep issues, but to the entire family. Having had the light at the end of that tunnel in very clear view made me realize just how desperately needed this surgery is – and how very high my hopes are on it “fixing” everything.

and I just now am realizing that I think I have only briefly touched on Kaylen’s issues here on the blog. You might have picked up a few more if you are on Facebook and hear my complaints there. I’ll have to do another “sleep” series on just her issues because I want to document her journey too – in case it helps other families like ours, at their wit’s end trying to deal with a child who is out of their minds and out of control because they NEVER EVER EVER sleep. We have run the gamut of trying to deal with things that normally inhibit sleep in preschoolers – she sleeps in a darkened room, there is a white noise effect from a fan, she doesn’t have toys in her room, etc etc etc. Then we found the magical Sleep O’s and while they ARE still magical and help her GET to sleep, she cannot STAY asleep. I did not connect the horrific daytime behaviors to the increasing LACK of night time sleep for a few months – again because there are a lot of variables in Kaylen’s environment – a sick sibling, a distracted mommy focused on the sick sibling, the nurses in and out of the house, lack of one on one attention – all of which have been and continue to be addressed, with mostly negative results. Like the more one on one time we try to give her, the more she is acting out.

I am too worn out at the moment to fully rehash her behaviors – and blessedly, she manages to keep herself together for the most part in public so most of you will never have to witness one of the crazy meltdowns. But trust me – they are horrible. It drains my energy on a daily basis. It stresses out the other girls. Ben and I feel like we are tag-team-wrestling trying to deal with her when he is home. It’s brutal.

and right now, the best theory is that it’s all because of the sleep apnea caused by her super-sized tonsils and adenoids. It makes sense – it kind of nicely ties up all the issues she deals with – the behaviors, the muscle/joint aches and pains, the tantrums – all of it COULD be due to sleep apnea. What we don’t understand (yet) is why her tonsils/adenoids got so big so fast without recurrent infections. It could be a horse and cart type of process. And we probably really won’t ever know. We do know that the major issue right now is opening her airway back up so she can hopefully breathe better at nite. After that we will be scheduling a sleep study to see if there is still any remaining apnea, and doing more in-depth allergy testing so we can be assured that she is on the right medications for that.

Source: piccsy.com via Terra on Pinterest

 

anyways. we will find out tomorrow morning where and when the surgery will be rescheduled for. I know that Dr. K’s nurse felt horrible about the mixup, so she is going to try her best to still get Kaylen in sometime this week or early next at one of the hospitals. Please pray its very soon – for ALL of our sanity! (and for the sake of my K-cup stash. i got four boxes for Christmas. they are almost all gone. I am pretty sure if i had bloodwork done right now the levels would read “French Vanilla – 7.8, Extra bold – 3.4, caffein-ophils – 98%”. with a side of Coke mixed in. And if you are lucky enough to get sleep at nite – i mean the real, good, deep kind you get in when you get to sleep more than 2 straight hours at a time without being JOLTED awake by some urgent need for a tums or ibuprofen or lip grease or to pick out the outfit du jour for the next three days right then and there at 3:24 am – then please please please enjoy a few minutes of that deliciousness for us!

I’ll keep you all updated. Cause i know you’re hanging at the edge of your seats and stuff.

 

At least we know that things WILL get better! Eventually. They always do! They might change and look different than what you’d hope for or expect. But they always get better.

ok before I start re-pinning my entire pinterest collection here in an effort to  make myself feel better, i’ll wrap this up.

Maybe if you’re REALLYYYYY lucky I will be so hopped up on endorphins after dance class tonite that I will post a happy/funny blog!!!

See you all on the flip side.

 

T-crest Out.

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