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.

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