The condiment queen.

If you’ve ever met Kendall in real life, chances are, you’ve seen her live up to her nickname “the Condiment Queen”. And what that means is that rather than actually eating real food, Kendall is mildly obsessed with eating the “condiments” – butter, jelly, syrup, whipped cream (yes she’s basically on the Elf diet).
And what this has to do with anything is that the condiment queen is about to reign supreme.

I hinted last week on Kendall’s page that we had had a VERY encouraging GI appointment in Milwaukee but that I needed to blog the news in order to do it justice.

The back story to why this is such good news:

*sigh as I try to figure out where to back up to in order to capture all of the feelings associated herewith*…..

Ok the back story is too long to fully explain. Basically – three years ago this month, Kendall was miserable. She was constantly sick, needing a ton of oxygen on a daily basis, was making no progress in the daily therapy she was undergoing, and we were at  a complete loss as to how to keep her healthy, get her to grow, stop the intense pain she was in (pain/nausea due to feeds into her jejunem/intestines). At that time her doctors decided to start her on TPN and we began “gut rest”.  The rest is kind of history. Ups, downs, good times, bad times…..but through it all, we have tried to keep a sense of “normalcy” with regard to food. It has never seemed right or normal to me to not have her sit at the table with us for family meals. Not that we are the Cleavers who sit down every night for a fancy meal – but when we are together and are eating, we put her at the table with us and make her a plate of appropriate foods and if she wants to taste/lick/eat a bite or two – great! And if not, no pressure.
Food is such a social thing. So many events in life involve food or are centered around food – and I never wanted her “issues” to be anything that made her stand out or hold her back. Of course we have learned what does or doesn’t work for her (meaning basically we’ve learned that some things cause more pain than they are worth and some things are MUCH easier to suck back out of her gastric tube than others!) And it’s not like Kendall eats a large amount of food by any stretch of the imagination.

But she WILL eat some things. She grazes. A bite or two here, go play, a bite or two an hour later, maybe a lick of butter as a snack, then a couple more bites of applesauce later.  I’m really really proud of how well we have done at keeping her “oral” in spite of all the gut issues she endures. And even though it doesn’t always go all the way through her system (most of it ends up sitting in her very weak stomach until it drains out hours later) – she eats.

How this relates to our current news:
Her GI doctor has come to the realization after the last few years of trialing multiple formulas, that maybe Kendall’s body is just not ever going to accept a commercially prepared formula as a means of nutrition. This really isn’t surprising considering the ingredients of most of them (corn syrup, etc.) – but it’s a confusing and hard to understand thing.  i don’t know WHY her body doesn’t accept the formula – and really, even that is just a theory at this point – but clearly, j-feeds have only led to a vicious cycle of bad septic episodes.  The last few months we have given her a break from j-feeds, and she is doing fabulously. Coincidence? It’s hard to say. But it’s not really a theory anyone wants to put to the test again.

so for right now – we are saying “see ya” to j-feeds of formula, and we are saying “come on, condiment queen!” to the rest of her gut! We are going to let Kendall prove to us what she can do for herself nutritionally. we are going to be SLOWLY SLOWLY SLOWLY weaning the calories down out of her TPN, and seeing if she can continue to maintain her nutritional status based on what she can take in orally.
i’ve gone over her diet with a fine tooth comb with our TPN dietician, and she is aware that we are talking miniscule amounts of food right now. But the hope is that if we can keep Kendall’s lower GI tract “cleaned out”, and maybe force her into “hunger” by reducing her calories, that she will inherently take in more calories on her own. Again – it’s only a theory at this point – but it is at least a PLAN and it at least FEELS like we are making forward progress!

right now Kendall’s TPN calories are three times what a “normal” 6 year old needs based on metabolic testing that we’ve done. Weaning her calories will be a painstakingly slow progress before we can say we’ve done anything major or noteworthy – but the point is – we ARE making progress. We are moving forward – and this is HUGE!!!!!
I feel like i’ve not done a fabulous job of fully explaining why this is all so awesome or why certain things work while others don’t.  I guess on some level – I don’t have all the answers. I just plain don’t know why my kid is the way she is. I just know she’s awesome, and she’s forging her own path. And i don’t know where this path will take us. But I’m glad to be on it.

So that’s our news!

I have lots more other blog posts floating around in my head – but my computer is still being slow and stupid and I’m feeling not very coherent right now so i’ll try to post more tomorrow.

Peace out party people~

T-crest.

{Be} Content.

I started to have one of “those” days today. Where i wished I had different clothes, a different body, a clean house, a maid to clean the house, that I got to go gallivanting off for a pedicure/vacation/shopping spree on a whim. All it took was a few facebook posts to get me both INTO and then back out of that funk real fast.

See, a few posts below the ones about the vacations and pedicures and clean houses, was one about a good friend of mine’s daughter, who spent the entire night in an operating room, receiving a new small intestine – and a new shot at life. I knew that she was likely going into the surgery last nite before I went to bed, and I fell asleep uttering prayers of strength for my friend as she and her family sat in the waiting room, for her beautiful daughter “N” as she endured a surgery of this magnitude, for the surgeons as they performed this life-saving and life-giving procedure, and for the family of the child whose organs were being transplanted.

Today she is still sedated in the PICU – but the surgery is complete and “went well”. She has a huge uphill battle ahead of her – but the smile on that little girls face – speaks volumes about the kind of inner strength she possesses. She has fought against a GI tract that has really never worked for 5 years. And now she will have a chance at someday being able to eat, of being able to get off of life-saving TPN (IV nutrition delivered through a central line in her chest – like Kendall has currently). And while my heart aches for the immediate part of her journey in recovery from the transplant, I am SO excited for the future that she will now have because of this transplant. Please join me in prayer for Miss N and her family as she continues on her journey in recovery! And also please pray for the family who made the ultimate gift – choosing to donate their child’s organs so that others could have a chance at life. I cannot imagine their pain and grief today – and hope that they receive some comfort by knowing that their sacrifice has helped other children today have hope.

I am also reminded of another little girl’s battle – on this day one year ago. It was the night of Kendall’s first IMG_1349 benefit, and I left her in the hospital with Ben while I went to pick up my babies from school and drive to the benefit. Ben tried to put me on speaker phone when the team was rounding, and I only caught every third word or so – but I heard enough to know that it wasn’t super awesome. she had been in the hospital for two days at that point, and had been very ill at home for two days prior to that. I don’t think I even had any idea how very very sick she was… She was septic (blood infection) from two bacteria and a fungus, and was also fighting influenza A. And as sick as she was that morning when I left – she was even sicker by that evening, when we all paused to pray for Kendall. And I still hold firm in my belief that that nite, our prayers were heard.  I was unable to make it back up to the hospital that evening, partly because at that point I had been awake for almost four straight days with literally only a few minutes of sleep – and I couldn’t even function. And yet – I could not sleep that night either. Something kept me up, kept me on my knees begging and pleading for God to just fix her, make her better, let her stay here with us. And the next morning was when kaylen locked the keys in the car as Ben was calling to tell me they were taking her to surgery and I felt like a caged animal – wanting so badly to just FLY UP THERE and be with my baby and yet having to wait for the police to come and then the long drive and obeying the speed limit and just….ugh. hard memories.

And yet we have a happy ending. Here she is – having destroyed the TV room/kitchen area I worked so hard to have clean last nite because she is having a crappy pain day – but she is HERE. She is home. We are together. She has LIFE.

So how can I even think about complaining about my house/toes/lack of vacations??? I have the greatest gift of all – my family. All together. Under one roof. Mostly healthy.

No words for my gratitude today. Just thank you.

 

Hope you all have an awesome weekend! Don’t forget to go like “terra talking” on facebook! I’m still fine-tuning the new blog look and will reveal it once we hit 250!!!

and to everyone who helped sign our petition – we hit 1000 after four days! We are shooting for 10,000 now! Thank you for helping us Keep Kendall Home!

 

terra

A Very Bad Trade.

image You know that scene in the movie “dances with wolves” where Wind In His Hair negotiates a trade for Dances with Wolves and another tribe member and he says “Good. Trade.” – Ok maybe you don’t. But basically, this morning, I get the BAD end of a “trade” with Ben. One that I made while unconscious. He had gotten up to change 2 of Kendall’s night-time diapers, so he told me this morning when the unmistakable odor of an emptying intestine wafted in that it was my turn.

I think even if she had TRIED to make a huger mess it could not have happened. i’ll spare you too many gory details (and I won’t even subject you to the pics I took to text to Ben in the other room) – but suffice it to say it was beyond nasty. More disturbing than an entire colons worth of fecal matter literally exploded all over was the fact that her entire g-tube (from her stomach to the drainage bag) was filled with thick bloody drainage.  ok sorry now that everyone is beyond grossed out – i’ll just say that the stuff that continued to pour out of her stomach and intestines was disturbing to say the least. But she was acting ok – so off to church we trudged.  Besides being slightly klutzier than normal, all seemed ok – but she had a definite fever when we got home and put her to bed.  It was much higher than hospital orders to get the line cultured – but not quite at our new higher baseline we set a couple weeks ago with complex care – so we let her rest.

She had come back down on the temp after a little rest, and still seemed to be ok, and the bleeding had slowed photo WAY down (I was still having to blast bloody clots out of the end of her tube every so often with warm water) – so we let her play again. But sure enough towards bedtime she just had “that look” to her again, the temp was back up, HR (heartrate) up again….I hate the nonspecific but definitely not good things she throws out there to keep me on my toes! I honestly have no idea which way to think at this point. We know her platelets are in a normal range, but they aren’t of the best quality (picture a company who has all of its positions staffed, but those workers aren’t the brightest bulbs on the tree – that is kendall’s bone marrow most of the time!) So it could be an early (and rather violent!) response to a possible line infection (worst case scenario), it could be a UTI or bad tummy virus (not great but do-able), or it could be a stoma infection (the insertion site of her G-J tube has an infection – best case scenario). OR – it could all just be kendall’s random kendallisms for the week. She isn’t due for labs this week, so we are kind of in the dark unless we can’t keep her temp down or she starts bleeding again. Either of those things would mean we need to actually head in – even though I am fighting with all my might to NOT entertain that idea.

{the picture is from two weeks ago waiting for her tube change – she is ultra puffy from gut crappiness that week – normally her chin is nowhere near touching her chest!}

Hopefully she doesn’t decide to spike a higher fever or start bleeding in the middle of the nite tonight…but I am pretty sure that if i go ahead and pack my bag for the hospital that THAT will guarantee that she will be ok until at least the morning!

So that’s just a quick update from here tonite – in case I end up missing for the next few days, that’s where i’ll be! (just kidding. I never go missing for that long!)

If you are local to here and would like to be a part of the Hope for Kendall fundraiser Trivia Night that we are having on February 10 – please go to this link and buy your tickets soon! we sold out of tickets last year and it is going to be even MORE fun and amazing this year! I would love to see you there! Let me know if you have any questions! I’ll have more info up about it soon – but I just want to continue to give those of you close enough to attend the chance to get your tickets!!

www.hopeforkendall.org

 

 

thanks so much for checking on us – and for your prayers for little miss stands with a fist.  I know she’s in a lot of pain, but won’t ever slow herself down – so your prayers for relief for her are so very appreciated!

 

terra.

(Image of Dances with Wolves is the property of Orion Pictures, original distributor of the film.)

{Be} Affirmed.

Today’s appointments were MUCH quieter (because my awesome mom kept the other 3 banshees) than yesterdays, but went equally as “well” as one could expect given our subject matter. Kendall spent the entire hour in the GI office playing with the cups and water in the sink, so managed to absolutely soak her outfit and had a nice puddle about 2 inches deep on the floor by the time we were done talking – i cannot even imagine how much worse that would have been with her partner in crime K3 in attendance. Oy. Pass the xanax bottle back over here just thinking about it!

It wasn’t so much that any spectacular new information came out of this appointment – but I think what made it so “good” in my mind was that our wonderful GI spent a lot of time “affirming” his support of what we do for Kendall, how we manage her care, how far we have brought her in 2 years, and all the other million and one things I question and juggle in any given week with regard to “Kendallisms”. We discussed her recent inability to tolerate feeds beyond a day or two in a row, the increased pain episodes with them, the constant fluid battle, and the autonomic “horse and cart” situation (is the dysautonomia causing the GI dysfunction or is it the other way around?) – and in essence, “if it ain’t broke, don’t fix it”.

Kendall is growing and thriving and having great days and a reduced infection rate – doing SPECTACULAR. Beyond needing better pain control and an overall Plan A in place for how many days without feeds can we get away with before we run into trouble, things are working pretty well. Her body has finally found some kind of a happy medium with operating between the TPN, extra IV fluids, lowered J-feed rate and prophylactic antibiotic coverage – so here we will stay. While I hope we do still make GREAT progress towards weaning her off of TPN in the near future, we have a few options. One of which is switching her to a formula that has a different metabolic makeup than what she is currently on. Previously we couldn’t get her to tolerate the calorie load of a toddler formula (she is still on an infant formula) without causing some pretty bad GI bleeds – but we have seen signs that she may be getting less sensitive to the richness of the formula, so we are going to slowly start weaning her over with a diluted version of the new stuff. I am glad that we are finally doing SOMETHING different to try to help her gut get over this hump – but also trying to not get overly excited that the new formula is the be all/end all of fixing a broken GI tract. We are going to trial a medication on a “PRN” basis (i think the letters stand for Per Requested Need, but basically it just means its not a scheduled dose of medication, but something you take when you need it. Like me and Xanax – it’s just PRN. which ends up being every three hours some days but who’s counting, really?!?!?!) The problem with this medication is that it only works on about half of Kendall’s bad day symptoms, and has a slight risk of making some other problems worse – but it’s definitely worth a shot from where we are sitting now, and should tide us over till the appointment with the autonomic GI. (and for my own memory purposes – the tube change portion of our appt day was equally as interesting, as when they went to pull the old tube out, they couldn’t figure out where it even ended because her intestines were so full of air it was distending everything and squishing it all together. The tube was once again encrusted with yeast spores making it all the more important that we strictly adhere to the 12 week or less change protocol. We are feeding WELL down into her jejunem so any days of reversed motility definitely indicate a CIPO like episode, and we should be in better contact with Dr N when these occur so he can adjust her TPN those weeks instead of us trying to play Jekyll and Hyde with her fluids/feeds like we have to now. And I made the room laugh when i said that tubes should not smell like county stadium on a hot summer day. I think that is all from the IR suite!)

Overall – it was just a great GI appointment. I was looking back through where we were at last year at this time on an app I have on my phone – and the irony was not lost on me that my entry for January 5th 2011 on Facebook was “WORST. GI. APPT. EVER.” – the difference a year (and a heck of a lot of medical interventions and TONS of prayer) can make, hey? We were faced with some very tough decisions at our appointment last year – definitely a rock and a hard place. And while I would stay we still live between that rock and that hard place, we’ve managed to find a way to make it a little comfier. Redefine “hard”. Cozy it up with some pretty blankets and glittery wall art.

We feel so very blessed for the absolutely great run Kendall has been having health wise. i do not know exactly what has made the biggest difference, but I have a feeling its a hundred little things all adding up. Dr. N today even told me that his “doctor brain” was very impressed with how I have come up with a fluid plan that works for Kendall, in spite of the very subjective nature of it – that I can keep an eye on her electrolytes, fluids, I’s and O’s, and third spacing penchant, and yet keep most things relatively in kilter. This is why we drive three hours to see him. Instead of pulling some idiot ego out of the closet and telling me i was doing it wrong, he analyzed it like a doctor and actually complimented me on it.

So our choices, while tough and not always “the right ones”, were Affirmed today. They are affirmed every day by the smiles on KQ’s face, the squeals of laughter/frustration/mischief while playing/destroying the house with her sister, by the fact that every day we are home is one less day we spend in the Big House.

I hope to spend many more days in 2012 being Affirmed in the choices we make.

 

terra

For Fun Trivia – if you look at the picture of the hospital, on the far right you will see how it curves, and on the very top there is a blue round “atrium” like feature – directly below that, on the 11th floor, the larger floor to ceiling window is where Kendall spends a lot of time hanging out when she’s in and feeling good enough to be up and about. It’s just a lounge type area but she loves to sit there in her little red push car and watch the cars driving by. I also take a ton of our pics in that space cause it has such gorgeous light! All the way down at the left side of that same floor is where the ginormous room with the double couch bed was! So there you go – that’s where we hang out when we are in our home away from home. Hoping we can stay away from it for a LONNNGGG time!

{Be} Complex.

(are any of you wondering how long i’ll keep up with the “be” titles? Cause i am. wondering that about myself i mean. i give it a week tops. over/under 1.)

So anyways – todays post is titled that simply because that is who we were seeing today at CHW. Special needs/complex care. Typically the level of “help” we get from this team is logistic at best (meaning they help make sure that all the other doctors on kendall’s team don’t come up with conflicting ideas – like when GI wants to start overgrowth antibiotics and ID tells me that that will mutate her gut flora – complex care helps mediate between the ideas and asks us what WE want to do for kendall and helps us make that decision.) The doctor who we see has been a bit “overworked” and as such has not been the best advocate for Kendall (in my opinion) at times – but today he definitely redeemed himself. Well, at least a little bit.

We spent a lot of the appointment kind of covering old ground (part of his lack of input on kendall’s case the past year was because he was the ONLY doctor in the program, and as such was just too darn busy to remember her/us most of the time I think!) – like exactly which of her meds/diagnoses are still relevant. or the fact that his big brainstorm of the day was that she “seems to have a lot of dysautonomia”. my jaw hit the floor. I wanted to yell “welcome back to the page the rest of us have been on for a few years! how was your coma!?!?!” But I refrained. (because i was trying to be CALM, remember?) Anyways. He may have meant it in more of a diagnostic/genetic way vs the typical way its used as a catchall diagnosis for “all the crazy random crap that kendall’s body pulls which keeps us on our toes”. But he wants to do some more digging/theorizing/testing on that front. And more than likely start some medications to help get some of her “issues” under control. We have tried to hold out on starting meds that try to “control” systems that are just wacky without rhyme or reason, because we don’t want to get into a “chasing our tails” type of pattern.

I’ll try to explain that a little more.  For instance, Kendall’s heartrates will often be very erratic.  She will bounce literally all over the map all nite long – and yet be perfectly “healthy”. Her system just doesn’t have good regulatory mechanisms because the energy required to keep things “stable” is often being diverted elsewhere. The heartrates which used to scare us we now just watch with one eyebrow cocked, waiting to see if it turns into a “real” problem, or if its just a “crazy nite”. For the most part her heart itself is “ok”, so we have come to an understanding that the issues we see are just an inability of her autonomic system to regulate itself, aka “dysautonomia”. (and for those whose children suffer from truly debilitating dysautonomia, please know that I am not trying to trivialize this diagnosis, i’m simply trying to break it down to simplistic terms!) there are some VERY severe forms of dysautonomia, and there are also some very mild forms of it. Kendall probably falls somewhere in the middle of the spectrum, and some days i’d say more towards the severe side with some of the reactions we have seen to seemingly innocuous situations. The problem with medicating some of the issues that dysautonomia affects is that by, say, trying to control her heartrate fluctuations, we could bottom out her blood pressure. By trying to regulate her temperature control center, we could throw her thyroid out of whack.

This is part of the frustrating cycle that so many mito families find themselves in. Where is the line at which you treat issues and risk creating new ones? And of course, i’m not saying that starting kendall on a new medication WOULD create more issues – but for us, it’s just been one thing we could do, or attempt to control rather – limiting her medications. I KNOW that so many people probably use “autonomic regulators” with very few bad side effects, and in fact most kiddos i know of who take them actually have great results from them. But – its still not something to just jump into. Kendall has been referred to a couple different dysautonomia centers, and meds have been brought up a few times – but it just hasn’t seemed like the right choice at the time for plethora reasons.

A new dysautonomia expert was recently hired by milwaukee that dr G (complex care) wants kendall to be seen by, so we will wait to see what she has to say before really jumping into things. I am excited by the fact that she might be able to come up with some good ideas to help get control of some of the “loose ends” we deal with in regard to Kendall’s “healthy days”.  None of this info about “dysautonomia” is new really – it’s more my shock that THIS doctor, who tends to blow off ALL of our concerns about kendall’s issues, finally saw today how even on a GREAT DAY, we still have a LOT to deal with, and a lot of moving parts required to KEEP her looking so great.

Other things that came out of this visit is that we will be getting a few things switched over to IV meds in order to alleviate some of her gut pain ( having to push in a large quantity of meds all at once into her J-tube causes a LOT of issues for her lately – we used to be able to get her meds in no problem. I’m still hopeful that its just still the aftereffects of whatever crazy virus Kaylen is fighting, but i am relieved that dr G realized on his own that getting some of the “easy” ones into her TPN would be a big load off! And the last thing is that we definitely need a LOT of followup on the pee issues/lack thereof. i had hoped we could just wave some magic wand at her bladder and there would be a good quick easy fix. No such luck. We will at least be hopefully avoiding further ER trips for a simple cath, but this will involve getting home cath trained and starting on the intermittent cath schedule that the urologist suggested last year. And we have to follow up with him sooner than later. And she will need MORE horrific testing to see where the problem is. Insert a swear word here. I still hold out hope that both her bladder AND her gut will just wake up on their own before i have to actually act on any of this stuff.

I’m totally losing my train of thought here so i’ll wrap it up.

Overall – it was a good visit. We are moving forward, not conceding anything just yet, still hopeful for many many many more great days for KQ! And yes we did survive having all four girls plus me plus the doctor plus our nurse practitioner in one teeny exam room for an hour and a half. Barely.  momma needs a xanax now.

Happy January 3rd! Hope everyone is staying warm!

T-crest.

{Be} Calm.

I’m trying to remain calm on this second day of 2012.  I’m not really THAT stressed (or whatever the opposite of calm is) – but we have a lot going on in the next couple of days.

For starters my heart crap is kicking back into gear again. I had a reprieve of almost 4 straight days with Be2blog very few “kicked in the sternum” episodes. Then they started back up this morning with a vengeance. Hoping that some good information comes out of this monitor wearing and that the doctor can at least help me learn to recover from the episodes a little quicker/better. So I’m trying to not despair that they have restarted, and instead have hope that they will go away again any minute now.

We also leave tomorrow morning for two days of appointments up in Milwaukee. Again, nothing huge. Just regular routine followups. But I’m hopeful that GI has some new ideas about how else we can keep Kendall’s tummy moving, preferably with a modicum of pain involved.  There are a few other body systems we will be discussing with complex care, so fingers crossed that everything stays mostly at its regular crazy baseline.

The girls start dance up again this week, Kaylen is supposed to start school on Wednesday (but we’ll be in milwaukee), and then we will be preparing for Karissa’s MRI on Monday morning. Ben is leaving for his trip tomorrow morning also. I need to pack everything required to keep KQ functioning for 24 hours, plus everyone’s clothes, plus meds/o2 tank for kaylen, don’t forget the new insurance cards and papers since everything needs to be updated now that its the new year. And while none of this is super stress worthy – i feel like I have the energy to maybe pour myself into the carseat and press the gas pedal. That is about it. The rest of it feels like a marathon at this moment. So i’m attempting to not get panicky about it.

It will all be done. It will all work out. the appointments will bring about the exact information and changes that we need to have happen, and we will all be safe and sound and ready to conquer our usual crazy schedules again starting next week.

All the other stuff I WANT to get done – it will get done.

Because what really matters right now is that we are doing good. We are home together. Kendall is healthy by her own standards. The rest of us are mostly healthy. The heater works again in our house. The rest is just icing.

As always – so much more to say – not enough time to say it in.

thanks for checking in on us!

 

love and hugs~

terra.

Atkinson General Hospital.

 

Part 1.

That’s what we’ve decided to rename it here at our abode.

I don’t even know how to go back and begin trying to start at the beginning of the medical saga that is our lives – so we’ll just kind of jump right in!

I think I had posted a while back about Karissa’s issues. Add to that now Kaylen and as of last nite, ME TOOOOO!!!!!

YAYHOO.

So  – a quick recap/update/intro on what’s going on here so you can keep up when I am a completely nonsensical mess in January. K?

Karissa

I think in my last post referencing K2, I discussed her having had a spina bifida defect at birth and a few of the complications that we have seen over the years from that. And I also talked about her general issues/decline over the better part of the past year – things like cognitive issues in school, a noticeable decrease in her k2aTT energy levels, and just a basic blah-ness to her. If you’ve seen her recently you’ve also noticed the addition of some new hardware to her – she has had a pretty shocking and quick decline in her vision since last spring. Of course this is a rather “common” occurrence for many kids – to need glasses at around this age. Even the doctor was rather concerned though about how quickly it went SO far downhill – and I was shocked that Karissa had never once verbalized that things were “fuzzy” or in any way hard to see! Getting the glasses though was a huge help to a lot of the issues we had become very concerned about (cognitive issues at school, behavioral outbursts/super-emotional, headaches, etc). Unfortunately, the glasses didn’t fix everything – as she was still dealing with a lot of urinary and bowel issues – all of which she had very badly right before Kendall was born also, but were just pushed to the backburner when it seemed like everything else was crashing in.

So when we finally got to talk with the pediatrician about all of our concerns, she agreed that it was time to talk to a neurologist who deals with spina bifida, and to order an MRI to look for a condition called “Tethered Cord Syndrome”. Basically, in a healthy spine, the spinal cord is able to move freely within the vertebral space, and this is part of what allows us all our flexibility and ability to deal with a variety of injuries that seem like they should otherwise be debilitating. In kids with a spina bifida defect like Karissa’s, where surgeons often DON’T go in and correct any abnormalities like happens with the more severe and open forms of spina bifida, the spinal cord unknowingly can connect or “tether” to the backbone via a variety of mechanisms (bony or fatty growths usually), and the spinal cord is no longer able to float freely in that space. As the child with tethered cord grows taller and becomes more active, more problems from having a tethered spinal cord start to arise. Understandably, the more stress and strain that is put on a cord not designed to stretch like a rubber band, the more problems will start to pop up and get worse. And that’s where we are at with Karissa.

She may not have a tethered cord. She could just be having a really really rough year and having it show up in a lot of different areas in a lot of different ways. I mean, admittedly, our lives are far from “normal”, and it has only been in the past couple months that we have seen ANY kind of “stability” for the first time in years! I go back and forth a lot with thinking she definitely has a tethered cord one minute, and then the next thinking its all just ridiculous and over-reactive. But watching her change and withdraw more over the past few months – I know its the right thing to do, to at least get it checked out.

When the nurse called to do the pre-procedure questionnaire for the originally scheduled MRIphoto (which we had scheduled at an outpatient center), she said that due to Karissa’s snoring (she sounds like a train most nites!) and the fact that Karissa is needing near daily ibuprofen to help control her pain, that we would need to reschedule the procedure at the main childrens hospital (the one actually here in chicago! yay!), and she would need to be put under GA (general anesthesia) and be monitored for a while afterwards. So now the MRI is scheduled for January 9th, with followup with the neuro on January 12th.

From what we understand right now (based on conversations with the pediatrician and dr. google only) is that if  there IS evidence of tethered cord, a decision would probably be made by neurology/neurosurgery to “de-tether” the cord in order to protect some of her organs from further or worsening nerve damage. I really have no idea how soon they would recommend surgery or IF they will recommend surgery. We know from X-rays at her chiropractor’s office that there has been a definite change in the lower curve of her spine – where it should bump towards her stomach like an S – hers has become much more C like, and bumps out towards her back. It’s hard to put into words – but I can say that all of the above, and more that I can’t even describe, have left me feeling very sad for Karissa. Wishing I could take away the pain, make her happier again, see her bubbly cloud gathering again for more than a few minutes at a time on random days. It’s still there, don’t get me wrong – but it’s changed. and I can’t wait to see it come back!

 

 

Kendall

IMG_3061 As a quick Kendall update – she is hangin’ in there! She has been in a LOT of pain the past few weeks – seemingly stemming from her GI tract. It is causing oral and enteral (by mouth and through her tube) feeds to not be super successful – in that she seems like she is STARVING, but then can’t handle more than a nibble or two. She tells us multiple times every day how she is in pain, doesn’t feel good, has a bad tummy, wants her bag on (her bag is how we relieve pressure that builds up in her stomach – we typically only vent/drain her at nite time so her formula doesn’t build up and try to get puked out/into her lungs, but when she is feeling really badly, we hook the bag up during the day when she is too sick to move off the couch much anyways). Anyways – we have been able to give her an anti-nausea medication orally up to this point, but since we know her gut does not absorb most medications very well, and since we would need to be using it nearly non stop in order to stay on top of the nauseating pain, it has really not been much of a weapon in the fight against “kendall’s crappy gut pain” as of late. After going back and forth with the doctor for FAR too long, we were finally able to get this medication ordered as an IV med, and wouldn’t you know – halfway through the first dose being infused, Kendall sat up in my arms, announced that her tummy didn’t hurt, and her temp instantly dropped two degrees (she had been running a slight fever, which she does as a pain response quite often). I’m so glad for the relief, and yet frustrated that she had to go through so many weeks with ZERO relief to get here. We see GI and complex care again the first week of January – and I am REALLY hoping they have some better ideas to help get this gut moving again. TPN has been an amazing boost for her – and i love watching her learn new things in school, which i know she could never tolerate if she was getting her energy zapped by having to use her gut for all her nutrition/hydration – but it would be really nice to get some native functioning back here SOON! Overall – she is doing well, and for that we are absolutely BEYOND grateful!

 

Since Kaylen and my updates will be so long, I’ll end Part 1 here and hopefully get to Part 2 tomorrow!

hope all is well with all of you~ thanks for still checking in on us!

Have a wonderful Monday!

 

terra.

on the road again.

I know I know – I have more than a few days to backdate! including my Mito Week wrapup! It’s been…well i just haven’t had time to blog much! for a plethora of LITTLE reasons that all just suck my time!

anyways – tomorrow (Wednesday, probably today for most of you reading this) we have a REGULARLY scheduled followup appointment with GI (gastroenterology) up in Milwaukee. A few weeks ago, k4web2 I would have said this appointment was just a file filler – one to check off and say we did it. But about a week and a half ago (when we tried to bump feeds up to the HIGHEST number kendall has EVER tolerated into her tube), things quickly started heading south. We made a few phone calls and got “permission” to back off of the rate of feeds and try to bump the amount of hours up. Wrong. That made things even worse and we went even FARTHER backwards.

so to say that I will be marching in there tomorrow like a bat out of hell on a mission would be an understatement. My baby who handles pain in SUCH a stoic way is starting to crumble. I am tired of watching her monitor all nite every nite, dealing with the nausea and ensuing grumpiness all day, watching her have less and less time to just play like a “regular” (well, as regular as it gets for kendall) kid. Having her struggle to catch her breath today for some unknown reason (although we do know it was related in some way to the intense gut pain/nausea she was having) was kind of a final straw for me. SOMETHING has to be out there to help her gut work. We will talk through it until we come up with a better plan than what we have right now. And i am sure that switching formulas will be a part of that – which is always a fun thing with miss “allergic to everything for no good reason”.

As a fun precursor to all of that partying, she gets to have her GJ tube switched out – YAY! If you’ve never had the pleasure of getting your fully awake and aware toddler velcroed to a flat hard table while you crouch down next to them to tell them not to be scared of the huge buzzing camera that gets pulled down to just about touching their head all while a doctor and 2-3 nurses and techs pull an old tube roughly 16 inches long OUT of the hole in their tummy, stick a wire INTO the hole in their tummy, move it around the bends and folds of their intestines, and then stick a new tube BACK into the hole in their tummy – well, then you’re likely not to understand the beauty of a couple Xanax washed down with a glass of wine. My brain hurts just thinking about what tomorrow will bring. I am sure my heart will be hurting even more.

but maybe not. maybe we will get some great news. I mean at this point, having A PLAN will be great news, so that is one positive take away. and maybe she will not cry at all for tomorrows tube change. Maybe she will sleep the whole way up and the whole way home and it will be an overall great day. If I think positively maybe i can wish it true.

There is a TON of logistics involved with getting the three bigger girls to their schools, picked up from their schools, to a rendezvous point with my sister, and getting us all in the same place at roughly the same time at my mom’s house halfway between home and milwaukee!

If you have a few moments to spare – please keep us all in your prayers for the craziness of our day! Ben will be on a flight to St. Louis, which just adds to the funness of this day of chaos! I’m not going to be super superstitious and say what usually happens when ben has to actually FLY for work (he usually drives) – but – let’s just all THINK POSITIVE ok>???

Ok. now i need to go try to get some sleep so i can be on point for this day of fun!!!!

 

thanks for checking in!

(ps – the pic in this post is from last year – it’s all i could grab on a short picture foray into my pic folder!)

terra.

Long time, no talk.

I am not even sure i remember how to publish a blog it’s been so long…

It has been a rather “challenging” couple weeks since Kendall’s surgery. Nothing that was horrifically bad, well, if you don’t count the whole watching Kendall disintegrate with pain for two straight weeks thing. But other than that, it’s just been kind of…buckle down and keep moving forward mode around here.  I am not even sure where to begin with “catch up” on all that’s been happening, and since most of it is just a lot of medical mumbo jumbo, i’ll probably just try to sum it all up and move on from here! And then you’ll just get a lot of the random terra drivel that keeps you coming back for more.

Sound good?

Ok so – since our last post, it has been a mind-numbing blur of trying to keep up withIMG_1186 a very ticked off Kendall, trying to stay on top of her pain (that is the cause of the pissed-offness), trying to not question our decision to keep her home vs. going in for an eval at the ER, trying to just survive as best as we know how, adjust to this new “normal”.  And yes, I realize that some of this sounds super melodramatic. I am really not trying to make it seem that way, because I get that its not really “THAT” bad.  But her pain has been at epic levels, and it did not appear to be solely from the surgery. In fact, after the first two days, I am pretty sure none of it was from the surgery. She was very bruised and swollen where they had to push pull and tug at her skin to get the port implanted under the skin, and thread the catheter (iv tube) through her jugular vein. But the pain she was having was definitely of a more intense nature. As best as we can piece together after the fact (we being ben and I, her nurses, and our GI in milwaukee), it seems like the GA just did a number on her whole gut. I’ll spare you all the grisly details, but it was not pretty. We went through two bottles each of childrens tylenol and ibuprofen. No kid should need that much pain reliever. But to go to anything stronger would have only led to even slower gut motility than what she had, and that would have been much worse. It was a definite rock and a hard place. And we kept thinking that any minute she would turn the corner; after this nap, or tomorrow morning, she’ll wake up and be herself again.

Today is exactly three weeks past surgery, and I would say that she JUST started turning that corner on Sunday morning. as in two days ago. It has just been very draining. That is the best way I knowIMG_1199 how to put it. Her needs on an emotional level have been so high – not understanding why she felt so bad, and not knowing how to communicate her pain, or how to allow herself to be comforted. I think it was one of the first times that I have ever realized how “complex” her care actually is – and not from a purely medical standpoint. Complex in that nothing is straightforward. She has so many different “parts” to what affects her, that to try to fix one causes another to crop up. You can’t solve this problem because that solution aggravates this other problem. She is a virtual “whack-a-mole” of issues, and while our issues aren’t super critical at the moment, they are still difficult to deal with because one always leads to another. And its just hard to hold it all together some days.

i want so badly to take her pain away. I want it to be me with all the tubes and wires, so that she can run and play like a regular little girl. But you know what – SHE is the amazing one. She is the one who can be pinned down and jabbed in the middle of her chest with a needle, and be crying only because she can’t eat her oreo while we have the “sterile field” set up. She is the one who has learned to pick up all the tubes behind her and stumble her way from room to room, falling here, and running into that wall, or falling off of that chair – and pop right back up with a smile. And i am so sad that that smile has been mostly M.I.A. for the last two weeks.

But I think it’s gonna make a comeback here real soon.

Cause that’s just how my girl rolls. She gets knocked down, but she gets up again (and without the aid of the whiskey drink and the lager drink as per Chumbawumba’s instructions).

editor’s note: if that sentence makes no sense to you whatsoever, it’s totally fine. It’s just a song reference. Carry on.

It has just been a kind of crappy couple of weeks. We lost another mito angel, a sweet little girl named Ellie. I did not know of her until after her death, but she had an adorable smile from the pictures I have seen, and just seemed to exude life. She was 4 years old, and had a very aggressive form of mito known as Alpers Disease. Another little boy is in the fight of his life (for about the 3rd or 4th time in his short 4 years here on Planet Earth). Our little friend Eithene continues to struggle with the effects of a disease ravaged body trying to fight superbug infections. My heart hurts to even pray for these families, and the so many others who are dealing with the pain of living with an incurable disease.

See – I’m a real Polly Sunshine lately. It’s part of why I’ve avoided blogging. IMG_1175 I still believe in our God who is bigger than all of these problems, and who loves us enough to hold us through them. He is faithful, and He is always in charge. I know this unswervingly. I know that as much as it pains me to see Kendall in pain, it pains Him even more.  I don’t know the answers to any of this. But they are not mine to know.

We will all be ok. Because of the amazing generosity of so many of you. The cards, the gift cards, the chick-fil-a coupons, the face lotion, the offers of help, and the help that didn’t wait to be asked…YOU are all an amazing part of this story. I need to still do a proper “thank you” post. I hope you all know how very very very appreciated you are, even if I haven’t been able to scrape the energy together to send real thank you cards.

It’s been a rough few weeks. Having to deal with some of the worst pain I have ever been in in my whole life last week from {unidentified issues that i am trying to pretend aren’t gallbladder related} did not help me get ANY kind of my groove back. I am so grateful for those of you who put up with my whining, my disappearing, my moodiness, my….just me…..thank you. You know who you are.  I am hopefully clawing my way back out of the murkiness of the past couple weeks, although I know there’s still so much processing to do. I was just talking with a friend about the fact that while Kendall herself is not doing any “worse” than she was before the surgery, my view of her has kind of been “expanded”. I have been able to happily deny many of the other issues she has had to deal with in her life. This one, not so much. I am not sure why. I just know it is what it is. And that’s about all I have to say about that…

We are hunkered down for the impending arrival of “Snowmageddon 11” – a storm predicted to dump up to 24 inches of snow on Chicago=land, IMG_1203 and then blow it all around with 45 mph winds. Sounds like a rockin’ time. A time just perfect for Kendall to pull a Kendall, and do some strange thing that will require hospitalization. (and i’m only mostly kidding…) The girls already have a snowday for tomorrow, and Ben is halfway done with his first bowl of queso dip. I just hope we have enough cokes.  And really, I’m kinda excited for the big snow! We hardly ever get good REAL snowstorms around here, and its pretty awesome! I have the camera set up to get a shot every half hour or so of the amount of snow being dumped – I’ll try to have some of those up tonite to show you all!

And I think that concludes this episode of randomness. I need to go get some of the queso dip before it’s all gone.

And if you have any questions about anything having to do with her surgery or anything – please feel free to email me. I feel like I have had so many individual conversations with people over the past couple weeks, that I don’t know who I’ve told what to, and what  I said I would just blog about so everyone could hear it…

terra@2sisphotos.com

I hope that link works.

Ok seriously. the queso is almost gone. I’m going.

peace!

 

t-crest

More tubes, more tests, less answers.

The long awaited GI appointment update at last.

I actually had MOST of this typed up a few days ago, and then my blog editor ate it. Talk about frustration.

Although sometimes that is maybe a good thing, cause it might help me ramble less….

on second thought, no, probably nothing can help that.

Anyways.

To attempt to clarify this appointment – it was not because we had been in the hospital. It just so happened to be scheduled for a few days after we left the hospital. We typically see the GI every 3 months for regular followups and to make sure that everything is hunky-dory with kendall’s gut (which it rarely is, but we have learned to have a relaxed definition of “hunky dory”, so it’s copasetic.) Back in the week before Christmas, when Kendall started doing more weird Kendall stuff, and we started upping our home interventions, and then called him for some more support, he moved her appointment up from the last week of January to the first week, and gave us the new med to “buy us the holidays at least. we hope.” Obviously, it bought us christmas, but not new year’s. Close though.

so – it wasn’t because of anything that did or didn’t happen in the hospital, but it WAS because he knew something was going more wrong than typical. Make sense?

So – at the appointment was K, the nurse who deals with my frantic GI calls, M, the nurse from complex care who helps coordinate all of kendall’s specialists, Dr. N, the GI, and me and kendall.  K the nurse takes all of our info first, relays it to Dr. N, who then usually comes in and says, ok, address this issue with this fix, this one with that, add this, try this, see you in three months. It sounds like a not good system, but it actually really works well for us. I am obviously condensing a lot of talking. So this time he comes in and he is obviously up to speed on the fact that Kendall is getting the port put in, has spent 5 days in the hospital the past week, and that I am fed up with not having any help or answers.

Somehow he gets all worked up over “this output situation”. I don’t even remember how it came up. gj-tubeBut it really was bugging him that Kendall is putting out so much more bile. Now if you have a kid with special needs whose gut is not working optimally, you know the vast discussions that can be had on “bile” vs. “stomach acid”, normal vs. not normal, yellow vs. green, etc. So he wanted to get into a discussion on what was coming out and I opened up kendall’s backpack and showed him, and he did his deep thinking face rubbing thing.

Then he said that right now, our best option is definitely putting the port in, but that we would most likely need to talk about doing a surgical J soon, and that it was definitely time to do the motility testing. Our complex care nurse is nodding along like she totally agrees, Kendall is eating baby soap out of her diaper bag, and i am like “homey come again???” How did we get from “I think she needs a different formula” (which was my big question for this appt) to “she needs more surgery and more painful testing to confirm that things have gotten much worse for her gut”???

i was seriously baffled. Dumbfounded even. I felt like I had missed a major part of the conversation. I mean, I know things haven’t been super-fine in the gut department as of late, but how do we know its not her wonky kidneys or another metabolic process out of whack or heck, even just autonomic dysfunction at play here? Obviously none of these things are great answers. None of them are even really just good answers. But something about his jump to more surgery, and the manometry testing just seemed very defeatist to me. His whole demeanor changed, and I was left wondering how things got this bad this quick.

Now- as to what all of this really MEANS on a practical level –

no, we are not doing another surgery anytime soon. I will need some REALLY strong evidence that a surgical J-tube is going to be the absolute best option for Kendall before Ben and I consent to something like this.  Here is a link that kind of describes the separate J-tube surgery (which I don’t really understand myself very well). And its not that I think the surgery itself is a bad thing. I know it has helped out more than a few of our mito friends whose tummies have needed the help. For instance, our awesome model Samuel here, sporting the newest look in chronic tummy issues – he is showing us his new port (its the little round bump near his left shoulder, just past midline), his G-tube on top and his separate J-tube underneath that. It’s just that, in my mind, right now, its most definitely a step backwards for Kendall. photo It is to admit defeat in a small way, more so than doing the G-J was in the first place.  (aNd just to clarify, this is a picture of how her tube looks NOW – not the separate J) I know that J-feeds have made a WORLD of difference to Kendall and were one of the best decisions we ever made for her. And who knows, i may feel that way about this surgery some day too. but it just seems so young, too early to be having talks like this. It was just all a little too REAL. And it sucked.

In Dr. N’s opinion, we are tabling the J-tube surgery discussion till we get the manometry (motility) testing results back; in my opinion we are tabling it until further notice from me, which might be never. The manometry testing is a controversial thing among kids with gut issues. As Dr. N put it to us “We might catch Kendall on a great day, and get no answers from this test about what her gut is doing. Or, we do get answers from this test, and they are not the kind of answers we want to hear. But at least they will help us know what other directions we can look to get her help.”

so let me get this straight.

you want to put kendall through a rather painful testing procedure in order to either disregard any “good” results we might get, because we assume that they aren’t a true reflection of her gut function, or, we will get devastating news from this painful test that might mean we have to make hard decisions about her future care? Yeah, sign us RIGHT up for that. Cause that sounds like a GREAT way to spend a few days and a couple G’s worth of money. Sounds like Disney on crack right there – every kid’s dream come true!!!

Unfortunately, I think he is going forward with the manometry testing scheduling at least – which takes a few months to get into at our hospital. There are apparently only a handful of places in the US that even do this kind of testing on kids, and luckily, CHW is one of them. i mean, luckily if you are excited about this kind of thing. Which I am not. I was not excited about ANY of that appointment. I am not excited about ANY of the news or issues we have received or are dealing with for Kendall lately.

When Dr. B asked me the morning after we were transferred up there to CHW if I felt like Kendall has gotten better, rollercoastered, or gotten worse in the past 6 months, it really made me stop and think. I wanted to say that she has made great strides over the past six months. i wanted to tell him that we were all done being sick and yank all the tubes out and take back the formula and the pumps and the machines and the wires and give me back my healthy baby now please. I wanted him to be as excited as I was about the fact that she can walk now, and she says a few more words than she did 6 months ago, and that I don’t worry that she will stop breathing any given nite anymore. And I wanted to point out that she has only had 1 pneumonia in the past 6 months, (except then we’d have to forget the scary RSV issues she also just had a few weeks ago). and I wanted him to see that of COURSE I want to say that my baby is getting better every day because in my eyes she is. She’s my baby. I will NEVER give up hope for her. i will NEVER stop rejoicing in the inchstones, or the major milestones, no matter how delayed they are. I will probably NEVER accept that she has a disease that could continue to zap her organs of precious life-giving energy. Because I am her mommy and I just can’t give voice to those words. My head can kind of form the words from a semantic standpoint, but my heart never will.

k4web But I looked up at Dr. B that cold morning with tears in my eyes and I told him that I just wanted her to be fixed. I just want her to be better. And I still want that. And I always will.

Because the bottom line is, right now, her body is doing it’s own weird little thing. I am not going to say things are getting worse because I just don’t have solid proof of that right now. I know that we are dealing with a lot more issues now than we were say, 3-4 months ago, especially with regard to her gut. But  that does not mean “getting worse” necessarily. It just means we need to learn to support her a little better, a little differently than we are doing now. Hopefully this port surgery on the 18th will be a large part of that. Hopefully being able to keep her all hydrated up in a way that her gut isn’t able to do right now will give her tummy the break it needs to start working on its own again. Hopefully we are able to find the things and ways of support that she needs right now.

I hope…

I never stop hoping.

I hold on to hope because I believe in and know the author of all Hope. And I know He is holding my baby girl in His hands, and that He has all the answers that our doctors are so frantically searching for. He knows whether Kendall will need the surgery and He knows what the results of her testing will be and He knows the plans He has made for her.k4web2

So – even though I am writing this a week after the fact, it still doesn’t quite take all the sting out of that appointment. GI appointments are rarely good around here. But that’s ok. Because today Kendall is laughing. yesterday was rough, but today is good. And I hold on to the good days, and try to forget the bad ones.

Because really, that’s all any of us do.

Thanks for checking in on us~

 

terra

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