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, 
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.
What formula is she on now? I am sure you have gone through this already but just in case. My grand daughter doesn’t have what Kendall and to be honest we don’t know exactly what she does have. Because she has indigestion bad she had to be on a special formula. It had to come from the manufactor to our home. It smelled terrible but it worked. Khylie could keep it down and she gained weight. I will have to ask my daughter the name of it and the company. I know it was expensive but thank God insurance WIC paid for it.
Thank you Georgia! Kendall is on a specialized formula known as an “elemental” formula right now that goes through her tube, but she also drinks it (which is beyond me because they do REEK like nothing I would ever want to put in my mouth!) But hers is for “infant” concentration – and doesn’t contain enough nutrients to be her sole or main source of calories if she were to get off the TPN, and for all we know, it is still a part of what is causing her issues. The one we are needing to go to is Vivonex Pediatric – just not sure how her body will react to it. And yes, we are very blessed that our insurance does help cover the expense of her food. Right now the TPN (IV food) that she is living on costs upwards of $1500 a week. I am sure they would be glad to go to a formula that only costs that much for a MONTH! So glad I could be your first blog comment ever – thanks for taking the time! I appreciate it! 😉
praying for y’all… Angels of comfort and to ease K’s pain, yours too. we def need our own hashtag so you can be in my feed full time. travel safely! Talk soon —
xoxo,
~d
WE CAN DO THAT?!?!?! Get our own hashtag I mean! That would rock fo shiz. Thank you for your prayers – and we will talk soon. don’t go wild on the halloweeny stuff without me today! xoxo
Wishing it true for you guys too!!! Praying the stars align today and all goes as smoothly as possible….and that there is a plan.
Heather – thank you for your prayers (sorry – you will always be “kass” in my mind!!!) Thank you for your prayers for us and for a plan! They are very appreciated!
PRAYING for your day! I appreciate when you let us know in advance that you planned to go to Milwaukee, so when I read those posts on FB, I know this was planned and not emergency-induced. Please keep us posted as you can…and as always, let me know if I can do anything, big or small, to help out!
Keeping your sweet girl in my prayers. Hey, can we do prayer swap? I’ll pray for Kendall if you pray for my um, ability?, to talk to teenagers about sex and God? 😉 Kidding…I’ll pray for her no strings attached!
I’ve been following the story of your family and your sweet precious girl. I can’t imagine having to deal with all the issues you handle on a daily basis. You are a strong, wonderful Mommy and I am thinking of your and your whole family and wishing you comfort and healing.