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.

Hope In a Can.

So much hope in one little can. And a big bag of pure sugar.

With this crazy mixture, we hope we can rehabilitate Kendall’s gut. We hope her body will accept this blend of nutrition, absorb it, move it, grow on it, thrive on it.

Hope.

It’s the special ingredient not listed on that can.

If I were to pour out my heart here, all my feelings about this experiment – it would leave me feeling too vulnerable, raw, open. So i’ll try to sum up the ones that are closest to the surface.

To fully understand why I am emotional over this, you’d probably have to have more than a working knowledge of exactly why Kendall is on TPN in the first place. And then you’d have to understand that while TPN has been a lifeline, it has also been part of what has tried to kill her. It is the devil you learn to love and live with. And the truth of the matter is, the reason Kendall’s body has grown and thrived only on the super boosted TPN is somewhat of a medical mystery. Her issue lies somewhere in the nerves and how they communicate with her brain to communicate with her muscles. The messages get screwed up a lot. This leads to what is known as “pseudo-obstructions” – her body believes there is an actual blockage in her gut and it just shuts down operations in an attempt to protect itself. Except there really isn’t a blockage, there’s just an area of her gut that isn’t moving because the nerves are not working or the muscles aren’t getting the message or ??????

There is no real rhyme or reason to why these things happen. She could have a few good weeks with some minimal movement – these are the weeks that she is mostly happy, pain-free, not retching from nausea, wants to sit at the table and attempt to “eat” dinner with the family. And then she’ll have a “PO episode” – and her body will try to fight, and she gets her low-grade fevers, and has bad crampy diarrhea all day long, and gets nauseated at the drop of a hat, and lives from zofran dose to zofran dose.  those are the hard weeks. The weeks that I am quiet because the words I want to say sometimes aren’t “acceptable” language, and it mostly would just come out as a whine, a complaint about something over which I have no control. As she has had to fight off the regular colds and illnesses that a cold hard winter brings, the bad weeks have been more frequent lately. But then she’ll have a few good days and we try to hold on to those.

Overall – we keep moving forward. We focus on the good, the positive, the happy days. We choose to see that the overall big picture is one of awesomeness, and improvement, and yes – much hope. I am too superstitious to actually say out loud what next Saturday’s milestone will be – but if you have been around since the beginning, you’ll realize there’s a certain pattern regarding this current month.  And while I have no reason to think we won’t make it until next Saturday – I have a child who likes to pull crazy stunts. So i’m not gonna say it out loud yet.

So it is time to attempt to use Kendall’s gut for nutrition again.

For those of you who have seen her snacking before, you may be confused. I’ll try to explain.

Kendall CAN eat. On the good days when she isn’t doubled over with pain and nausea – she actually asks for a lot of food. It is confusing to understand if you aren’t around someone whose brain is routinely getting bombarded with the wrong messages from their messed up gut nerves.  Think about how you feel sometimes after having a tummy bug. You’ve puked up everything there could possibly be to puke up- and you’ve sworn you will never eat again so you don’t have to puke anymore. But your body needs nutrition. So you get messages to eat. And eat a lot. Eat whatever feels good, even if its telling you to run to Outback Steakhouse and get the biggest steak they have and load it up with mashed potatoes and grilled onions. The LOGICAL part of your brain tells you that no, that is not a good idea. But still, the message keeps coming – EAT EAT EAT!!! you may even have hunger pangs. Eventually you get brave enough to maybe nibble a saltine even though you know the risks are that you set off pukemageddon all over again.

Kendall’s problem is that she has never been able to logically connect that putting food into her mouth leads to the bad tummy pains. We spent the entire first year of her life hoping/believing the doctors who told us that she just needed to “wake up and eat” and all would be solved. She was in so much feeding therapy, speech therapy, we even took her to have her throat shocked twice a week trying to wake up the nerves so she would just EAT. After all that work – she finally learned to eat. She loved sitting with the family, she loved the social experience of “eating”. So trying later to undo all that work – it was hard. In her life, there’s not much she has control over. Some days, her wanting to snack on a few goldfish or have a butter sandwich is just not a battle I want to fight with her. We try to control WHAT she is eating – make it something that can eventually drain out her g-tube port if it decides to not move through very well. But if the girl wants a snack – well, she gets a snack.  It does not mean she is getting any nutritional value from it. Most of the time it sits in her stomach until she is hooked up to her drainage bag at night and then it makes its way back out her tummy. sometimes it slowly moves through, still mostly undigested, and shows up on the “other end” a few days later. sometimes it causes a massive bout of immediate diarrhea and it literally travels right through her. We try to help her connect the dots so she can start making smarter choices for herself – and sometimes that works and sometimes it doesn’t. 

But the bottom line is – food is her choice. the amount that she actually ingests is roughly equivalent to 1-2 snacks the average toddler would consume. That’s on a good day. The actual nutritional intake from that is very close to nothing. so even though you may see her “eating” – it is not a sign that she is “fixed”. The kid has literally been puking/retching into a bucket and asking me for a snack in between heaves. She just doesn’t get the connection. She fights through so much pain and nausea I cannot even fathom. We have tried to cut down on the major swings by just keeping her on a scheduled regimen of zofran (vs only using it when she is in obvious discomfort). We have adjusted her meds that have to go into her gut as those make her nauseated also. We have given her body 6 months of “rest” from having to do any of the work of absorbing nutrition, while still keeping it “moving” in a way by running pedialyte every night into her jejunal feeding port (into her small intestine).

And now, after 6 months of increasing stability and an overall positive direction towards “good health” – it is time to put her gut to the test again. Since we have previously tried every commercial formula out there considered “elemental” (already broken down so digestion is easier on kiddo’s with tummy issues), our dietician and tpn team got real creative with their plan. Due to some of what we know about her body does or doesn’t break down foods, we are going with a formula that is completely devoid of carbohydrates (since the assumption is that this is one of the harder parts her body has with malabsorption and why she requires such a high amount of carbs in her tpn in order to maintain growth). So the formula is carb free, but nutritionally it doesn’t work very well to have a 5 year old on a strict Atkins diet, so we have to add in a simple carb like dextrose. So we get a huge box full of sterile water, the carb free formula, and huge bags of D20 delivered to us, and we mix this up into a super unpalatable blend of nutrition.

We plug her feeding extension in to her jejunal port, turn on the pump, and we wait….

Last night was the first night of running this formula.

I have strict instructions that she is to be brought to the hospital (Milwaukee) immediately upon any sign of intolerance. Even if I think I can push her through it – she has to be admitted. Her GI is not a huge fan of doing this outpatient, but our team as a whole knows that our goal always has been and always will be “happy days at home”. So here we go.

she will be running this formula at a very low rate 24/7. If you know Kendall, you know she already wears her backpack with her heavy TPN bag and pump in it 24/7. So now we add in another bag, another pump, another tube she is constantly hooked up to. We will slowly be working our way up in her rate over the next couple of months. At some point around June, assuming she tolerates the rate increases, we will begin weaning down her TPN support. This will be HUGE. ANY amount of time we can get off the TPN is that much more boost to her liver, that much more of a shot at “surviving” tpn.

I am oh so very hopeful. And yet a teeny bit afraid to get my hopes up too high. I know God knows. I know God is in control. This is only so helpful on a day to day basis when it’s my baby, and the stakes for this succeeding or failing are so high. I have to hold on to that Hope though.

so here we go.

Mixing up a can of hope.

Cheers.

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terra.

{Be} Confused!

Well, as i had hoped, Kendall’s emergency warning symptoms of Sunday morning seem to once again just be the effects of a very wonky autonomic system! She spent most of yesterday laying on the couch quietly watching her Hot Dog, Eggo (Diego), and Berry Cort-cakes – temp still very slightly elevated, but no more bleeding. We held the new formula all day per instructions from her complex care nurse, and restarted it last nite by adding a teaspoon in with her regular old stuff. Our best theory right now is that it all was just a reaction to the new formula, since she has reacted every other time we’ve tried to switch formulas by having a pretty good GI bleed – they are just typically lower gut reactions, not upper like Sunday’s.

The reason we are trying to switch formulas, for those who are wondering, is because she is still on an infant formula. The kind most babies are fully weaned off of by 1 year because real food starts to replace those concentrated calories. It is pretty high in fat, as babies need a lot of fat for brain development – plus she is getting a precise mixture of fat (lipids) in her TPN every nite. Thus far, her body has obviously been burning  through them pretty well as her weight should be pretty hefty given the amount of calories she is getting. But in order to continue protecting her liver, we’ve got to get her on a more suitable formula. we can’t even talk about weaning the TPN further until we can get enough formula into her gut to prove that she CAN take in enough calories to sustain nutrition and hydration.

The problem is that most toddler/pediatric formulas are pretty dense (higher in calories per ounce), which seems to be where we are running into problems. We could dilute that out, but that really isn’t solving any problems. All it means is that we can get watery formula into her, and even then we would be making a major sacrifice in her hydration status. The first step is getting a new formula to work. So even though I had started with a half/half mixture of new formula to old last week that preceded this chaos of bloody gross output – we are going to go even SLOWER…. One teaspoon at a time. If you know me you know how hard this is. I HATE slow plodding progress. I want results NOW. I don’t want to take just one pill and wait to see if it works – I want to take a handful and make SURE it works. I don’t want to just clean my sink and be proud of that progress – I want my whole house to be magically sparkling in under ten minutes. One teaspoon of formula at a time is about as torturous as peeling off my own toenails.

But if that’s what it takes, then that’s what we’ll do. I mean, I know I’ve joked with Kendall that she’s a diva and a princess before – but this surely seals the deal! Of course if we run into similar problems at some point, with the bleeding increasing and the discomfort becoming obvious, there are a few other formulas left to try. since we’ve already had similar results with some of the more “common” kinds of elemental toddler formulas, we are somewhat limited – but I have faith that we will find just the right one that will work and keep her growing and make her gut happy enough to tolerate “food”.

And of course this is ALL assuming that the blood was even a reaction to the formula. It seems the most logical explanation at this point – but everyone is still mostly shrugging their shoulders and hoping it doesn’t happen again. No one more than me! She is running around (ie – being drug around in the laundry basket by kaylen) again this morning – which is encouraging. I can breathe a little easier! Luckily the girls are off school again today for Teacher Institute Days – I don’t know that I would have sent kendall anyways even if she HAD had school just based on the last couple days.

In Other Medical News…

Our beloved pediatrician called yesterday to leave a message for me: “don’t worry or panic yet – but it looks like there is a tumor on Karissa’s MRI. I am trying to get in touch with the neurologist and I’ll be in touch once I talk with him.” Note to self: do not listen to voicemails from the pediatrician while driving on the freeway. I about swerved off the road. now I do realize that in ALL likelihood, they are both looking at the same thing. That what the neuro termed a “cyst”, Dr. N is terming a “tumor” – and they are more than likely both quite benign (normal) in nature. Alternatively, Dr. N could be looking at more of a full report whereas we are pretty sure Dr. K (neuro) only got the “initial report”, and that upon further investigation by a more experienced radiologist, the cyst/thing actually looks more like a tumor. Again, likely benign as it has only just now photo started causing “issues”. I think I am doing a pretty good job at staying mostly calm while we wait for more info. I don’t know if they saw it on her spine or on her brain – as they did thorough imaging of both. I know that Dr K referenced the cysts as being on her spine in his office the other day – so hopefully this isn’t some other new thing somewhere else!

And then at LONG AWAITED LAST we have Kaylen’s consult with the ENT tomorrow to discuss tonsil/adenoid removal surgery. I have so much hope vested in doing this surgery and hopefully curing all of the issues we are seeing in poor kaylen – most of which we assume are stemming from next to no sleep due to what we believe is pretty bad obstructive sleep apnea. (Her tonsils and adenoids are quite large, meaning that most of the night she is having trouble maintaining proper pressure in her airway, meaning her brain is waking her up a lot of times to remind her to breathe. meaning she is up for the day after about the 89th time of this. which is roughly around 4:30 am. Not a good combo.) No she has not had a sleep study – everyone except Kealey has been “recommended” for one, but there aren’t a whole lot of sleep centers equipped for peds around here, and even if there were, insurance fights would take months. I am sure that at some point this year at least one of the K’s will have a sleep study –and once that first one is through, insurance will likely approve the others. This is all based on her rather obvious symptoms of apnea, both asleep and awake. Hoping he has a good plan to get our whole family some relief soon because Kaylen’s behaviors are becoming extremely unbearable to us all – and you can just look at her and see how miserable she feels.

And as i am about to hit enter I just got an update from her nurse that Kendall’s temp is again back up. Awesome. So we’ll see how much fun we can squeeze outta this day!

thanks for checking on us!

If you aren’t already a fan of Terra Talking on Facebook – click over there to the right on “like” – you’ll get the blog updates and if we ever were to have to go in for Kendall’s stuff – I would update it there. Help me get to 200 fans by the end of January please! (stupid silly personal goal – I know far more than 200 of you read here every day – so stop lurking and come join the fun!!!)

 

Hoping for a little more calm around here~

 

Terra.

Perking up!

I will try (TRYYYYY ok, it’s hard when you’re as verbose as myself!) to keep this one shorter. k4hosp7 Since the hospital network has decided I can’t get on Facebook anymore, I will try to update here when anything exciting is happening!

So after spiking a crazy fever last nite right around bedtime, things have been nicely calm around here today. Everyone has their own theory about why she spiked another fever, top of that pack is that she is still septic/bacteremic. It is unlikely considering the antibiotic/antifungal coverage she is on, and the fact that the PICC line had been in for less than 8 hours at that point, but it IS the most logical. Good thing Kendall has never once followed the “logical” path for anything – because that means we are more likely dealing with one of the other working theories:

Autonomic response to the major pain of trying to restart feeds into her J-tube (this is my theory).

Or

Possibly a “last hurrah” type of push from her body to kick the flu to the curb since she had just had her last dose of the tamiflu (antiviral) about two hours before the incident.

Basically, nobody knows. I think autonomic response because she had been feeling pretty crappy from the feeds since about 3 in the afternoon, and she finally passed out asleep around 7 after just being real quiet and puny that whole time (typical for what we see at home when she is in pain from feeds). At 8 pm she woke up SCREECHING in pain, our nurse and our care partner both were walking down the hall and came running in here to see what had happened, and they once again paged the sr resident in panic mode to get her to order something stronger than tylenol NOW. our PCA was almost in tears herself because we could not get kendall calmed down at all and she was like – “how do you fix her at home:? how do you get her to stop screaming?” And I just said, I can’t, and I don’t, that’s part of why we’re here!

k4hosp12 As they were ordering tylenol suppositories, zofran and versed, we noticed she was super hot, covered in goosebumps and shaking. Rectal temp was 101.4, which isn’t too bad, but it is definitely a fever, and definitely much higher than she’d been in two days. We put the tylenol in, and thirty minutes later checked again, and it was up to 102.8. I am sure if we had kept checking it, she would have spiked even higher. Even I myself was very concerned with how hot she was getting and how much she was shaking – it was reminiscent of our first nite here in the ER when she had the rigors from spiking a temp. (For the record, this is a new thing for Kendall, both spiking a temp and having the rigors with it.) But we stopped the feeds altogether for the nite, gave her the zofran in her IV (anti-nausea med), started her new med to deaden the nerve pain in her gut (Elavil), and she passed out asleep within about 30 minutes. Shortly therafter, she “de-satted” (her oxygen dipped down to 65), and it took her a couple minutes to slowly climb back up to the low 90’s, where we watched her and let her hang out for a few minutes before giving her a little oxygen. Within a couple hours, her temp had dropped down to 96 degrees, so she got huddled up under every blanket we had in the room, and she slept until 7 am this morning. The docs had decided yesterday to give her a “lab holiday” – meaning they didn’t pull any labs this morning bright and early! It was a VERY nice and welcome break!

And our day today has just been a lot of hanging out – watching Kendall come backk4hosp10 to herself, making messes with lotion and baby wipes. She has sat up a little bit more today, still pretty shaky trying to sit herself up, but once up she can balance pretty good! I am very glad to see this, as she usually loses motor skills for a good few days after an illness, and I am imagining that one this bigtime will put her back at least a week or so!

We had a few tests today – but I’ll update about those in a separate update so that those of you chomping at the bit for this one can get it!

thanks for checking on us!

Terra and Kendall from the W1104

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