The Saga Continues.

Sometimes I struggle with updating the blog simply because I feel like we are just “that drama” that everyone is tired of hearing of because it just piles up until its at an unbelievable point. This week has definitely been one of those weeks.

So remember how in my last post I talked about Kendall’s love of being inpatient in February? Yeah, she’s been trying REAL hard to end up there. Turns out though that her momma is actually even MORE bullheaded and stubborn than she is, and as much as she is trying to be in the hospital, i am trying even harder to keep her OUT of there. Sometimes my bullheadedness in this regard comes back to bite me in the butt.

Warning: the rest of this post will contain a lot of medicalities that will probably be over the heads of most of you. I do not mean that to be condescending – I am just saying – I know its a lot to take in or try to wrap your mind around. It’s a lot for ME to wrap my mind around. I do’nt blame you if you “don’t get it” or “have no idea what I am talking about”. I’ll try to summarize at the end so you can skip the detailed portion of this quiz!

As much as I had hoped it would be a long long long time before I ever had to write these words, it was a decision that was really out of my hands. Kendall was started on TPN last week, and made NPO, in an effort to give her gut enough rest to kind of “reset” itself and work back up to her baseline of gut function. Translation: Kendall cannot eat or drink anything by mouth, we are bypassing her GI tract completely by using her port to feed “iv food” directly into her bloodstream in an effort to divert energy away from her gut so it can rest and heal by not having to work so hard. And if this sounds to you like the kind of thing that happens every day, and you’re thinking – why didn’t they do this sooner? – let me assure you that this is not something we entered into lightly. The way it came about is a testament to the fact that having a medically complex kid with multiple doctors in multiple states is indeed as much of a nightmare as it sounds like. Thank God for Dr. Natalie who is definitely a no holds barred kind of person, and had no problem ordering whatever was necessary to help get Kendall better NOW, not waiting and seeing any longer, not playing pass the buck, not treating kendall like a file instead of a little girl who was in a lot of pain and distress.

So while I had hoped that it would be a quick “in and out” kind of thing with the TPN – give her a three day break, turn the feeding pump back on, go on with our merry lives, and only have to mention this episode in passing, it is becoming obvious that this may be a tad bit more involved than that. We still hope and pray for a VERY temporary need for this intervention. Our goal is still to have her off of full time tpn within this week-possibly 10 days. We are praying very very hard every day that Jesus would touch Kendall’s system and allow it to heal and rest and restart with no more pain and issues. Those of you who know exactly what TPN involves and means know all that is NOT being said in this post. And those of you who don’t, well, I pray that you never have to.

Besides the emotional issues that come as a mom having to realize that her baby’s organs are not functioning like they should, and that you are having to choose between the rock and the hard place, this has been one of the most physically challenging and stressful weeks I think we have ever had with Kendall. Without getting into too many medical details, there are very high risks involved with TPN infusions. That’s not to say that the benefits don’t sometimes outweigh those risks – but they are there nonetheless. Cliffnotes version of TPN: it is basically milky looking IV fluid that is made up of amino acids (protein), lipids (fat), and dextrose (carbs/sugar), with added electrolytes and vitamins as needed to give a person basically all the nutrition their bodies should be pulling out of their food/diets. While we do dextrose a lot for Kendall (sugar water as I often refer to it), we have never had to add in proteins or lipids. Both of these could cause a reaction in Kendall, the proteins because we have no idea why her body sometimes can’t break whole proteins down, and the lipids because it is very hard to find the right combo of fat that someone needs to grow/thrive, and it is very hard on the liver to process through this form of fat. TPN itself is very hard on the liver, and in a child whose body fights a disease that likes to not have enough energy to always go around, protecting the liver is paramount. It’s kind of a catch 22. She can’t produce energy without any fuel (food), but she can’t get enough fuel in her because she doesn’t have the energy to make her gut work hard enough to do that. Anyways – it’s not a simple thing to just say, here is a bag of tpn, hook it up to that needle hanging off of your child’s chest and call us in the morning.

We have been having to make some major rearrangements in our nursing shift coverage, schedules, etc in order to do lab draws every morning (over the first three days we started the tpn last week). I have lost major amounts of sleep staying up or getting up multiple times in the night in order to check on Kendall that her tpn/iv pump was running fine, that milk was still flowing, that she was still breathing/not third=spacing tons of fluid into her lungs/not breaking out in hives as a reaction to the lipids/not puking from dropping blood sugars too low or spiking them too high with the new formula of dextrose. We have had to watch Kendall essentially be confined to the couch or her bed because the pump and bag of food she requires 24/7 weighs at least half of what she does right now, and there is no way she can push/pull/drag/wear the bag in order to self-ambulate, even if she wasn’t super weak from lacking nutrition for a couple weeks now. My normally high stress levels have hit peak levels over the past week and I am snappy with just about anyone or anything that crosses my path. I feel like a rock has taken up residence in between my shoulder blades and my normally stoic self has been replaced with one of Sybil’s personalities who cries at the drop of a hat.

But through it all – that baby girl with the bright blue eyes is smiling. And why not? she pretty much has all of us wrapped around her fingers and being at her every beck/call/whine/yell! Want sissy’s DS to play with? here you go! Want Mickey Mouse (aka “hawt-gog” – for the hot dog dance at the end of the cartoon) on the TV every waking moment? OK!!! Want to use sissy’s special markers to color in the brand new coloring book? Sure thing! She’s a smart one that K4… And she is a trooper. When we tell her its time for “poke” (getting her port accessed with the needle), she climbs up onto the table (with a lot of help!), and lays right down to get sterile field started. She helps wipe her hub off with alcohol wipes. She shows us which toe or finger she wants us to use for her accuchecks (blood sugar monitor). She has adjusted so well to this new attachment, she is absolutely amazing. I know she will be anxious to start eating again soon, but I think she feels so much relief at not having to deal with all the pain right now from a non-functioning gut. She isn’t having major autonomic spells or bouts of horrible pain like she was just a couple weeks ago. We see more of HER coming through, and it is so very nice.

So the plan for right now is to just hold tight. We will restart j-feeds with her feeding pump really slowly tomorrow with pedialyte, and work our way up from there based on kendall’s symptoms. We want to walk a very fine line between pushing her gut to wake up, and not pushing so hard that we undo all the good we have just done with the gut rest by forcing it to work too hard too fast. But we desperately want her back off of tpn very soon.

There is ever so much more I want to get out about this whole part of the journey, but I don’t want this turning into a small novel.

I’ll wrap this one up with this observation I had the first nite we had Kendall NPO/on iv fluids only. I walked into her room to say goodnite like I do to all my babies every nite before I go to bed. And I had a mini moment of panic. Her food! I’d forgotten to make her food, mix it into the feeding pump bag, hook up her extensions….And then I realized, that for the first time in almost exactly 2 years to the day, I didn’t have to. what a part of our lives kendall’s pumps and bags and attachments have become. It made me tear up a little bit. It was like I felt I wasn’t doing my whole job as her mommy. But I quickly realized I was. I’m just doing it in a different way for a few weeks.

Keep on fightin’ baby. We all love you and are praying for you.

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xoxo,

T

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Comments

  1. Hi,

    I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

    Check out our web site at http://www.oley.org. For a good overview, click on the “New to Oley” button.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    dahlr@mail.amc.edu
    (800) 776-OLEY

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