Viva La Vida.

I have no idea what that means in coldplay-ese – i just opened up my ipod and chose a song title so i could stop thinking about one.
I think it means something like “living the life”, which is actually semi-appropriate for today. Living the Life. Keeping on swimming. Moving Along. All that …. stuff.

Tonite is our big Volunteer Kickoff Dinner for my Kidstown ministry at church (in essence my “job” as it were). It has been over a month of planning, and still there are loose ends i am tying up. Plus i am always nervous when i have to do lots of speaking in front of people. I mean, clearly, I have no PROBLEM actually talking for forever – it just makes me nervous to think about it. So we have our usual morning bustle, then therapy, then lunch for karissa, get her on the bus, then driving up to meet my mom to drop off Kaylen with her so we can go to milwaukee tomorrow, then run home and finish running errands for tonite, make sure i have stuff packed for tomorrow’s long day of appointments and driving, go set up the room for tonite, then actually HAVE the meeting tonite.
Tomorrow morning we’ll leave around 5 to head up to milwaukee. We are seeing her GI doc, who wanted us bumped up even earlier but this was his first available appointment, and hopefully getting in with genetics. GI referred us to genetics – i am assuming because they got a lot of test results back. I am trying not to think too hard about what that means. Typically you don’t get a Genetics consult unless there is a specific disease which needs genetic counseling. Occasionally you get sent to genetics when docs have no idea what else to do with you. I do know that in milwaukee their GI dept. does handle a lot of metabolic diseases, which we’ve known for a while is what we’re trying to rule out (or in).
So maybe they found something and we’ll get answers tomorrow, or maybe they found nothing, and are hoping that genetics can offer more insight. I just think that if it was NOTHING, they would have waited till our appointment in a couple weeks to have told us that. I am overanalyzing. I am trying to make sense of a set of circumstances which have no sense to them. It just is what it is.
And yet I am just a little apprehensive. Worried. Scared of bad news.
(warning – if my discussing bodily fluids and processes grosses you out then close this browser now! have a good day!)

She has not been interested in eating for about 5 days now, starting the day we gave her the vaccine at her well child check last thursday. And I know that sounds weird for a kid who eats through a tube in her stomach, but really, kendall LOVES to eat orally. She just can’t do it very well. She still will have one or two small bottles a day – just to try to retain some sense of normalcy. We had worked up to getting her to be able to swallow stage 1 baby foods pretty well too. (Of course she has weird reactions to everything she eats, but that was besides the point. She was EATING. She was HUNGRY for more. She wasn’t choking and gagging with every bite! It was almost like she was a normal little baby for about 2 weeks there! That was the point.)
Anyways – all of that has gone away. Solids are out of the question as the reactions she has aren’t worth the extra stress on her body while she’s fighting this vaccine, plus we can’t delineate if her rashes/diarrhea/constipation/vomiting are from the food or from the vaccine.
She also has had major volume intolerance, which is where she starts screaming in pain if her pump is putting food into her tummy too fast. We have to play with the rate and dose (meaning how fast she is eating a certain amount). Right now she “eats” about 4 ounces an hour, for two hours. So 8 ounces every three hours, until bedtime, when she eats an ounce an hour for ten hours. Doing this very carefully we are able to get her required 40 ounces into her. Any bottles and solids that she takes in is extra calories, which we know she does need. We have started concentrating her formula so instead of getting 20 calories per ounce, she gets 22 calories per ounce. She is taking in probably close to 1000 calories a day. Well, she was, prior to this most recent issue.
So anyways – volume intolerance is where we can’t get the food into her as fast as it needs to go. We have to slow it down, way down. So she is hooked up the pump pretty much continuously. Except that that makes her poor tummy very upset. So we have to take her off of it till she stops exhibiting signs of pain. During this time I can usually get her to take a bottle, but lately she is refusing that, even to the point of crying when she sees me making the bottle. Not a good thing.
So this morning I’d had enough of the Karen Carpenter routine and told her if she didn’t want to eat it or have it pumped I was going to put it into her my way. I pulled her formula up into a big syringe and started slowly pushing it into her tubey. I got about 3 ounces into her (which isn’t anything abnormal for her, she can typically handle a 2 ounce bolus no problem). As soon as I am pushing that 3rd ounce in though she starts horribly retching (dry heaving), and then she stops with her tongue stuck out and her face turns very purple and her eyes are still and i swear to you it was the scariest 3 seconds of my life while i am trying to help her clear SOMETHIng out of her airway. I have no idea what happened – i can only assume that her stomach was revolting against having food in it, tried to make her throw up, and either she was successful in getting food back up past her nissen wrap (the surgery she had in june to tie her esophagus to her stomach so that she can’t throw up anymore), OR – her stomach was contracting so much that her airway compressed in on itself for a second due to the contractions. Either way it scared the bejeesus outta me. I immediately opened her tube port and let her “puke” (drain her stomach contents) into a bottle, and out comes rushing a bunch of bile. So she was clearing her intestines not just her stomach. She has puked bile before – but not usually when she has just eaten. Something clearly went haywire. Within an hour, she had pooped one of the most disgusting poops i have ever seen or smelled in my life. I thought maybe she had gone down to the Bayou and inhaled a gallon of swampwater and THAT’s what was coming out. It was beyond nasty. I immediately dunked her in the bath and then she fell asleep almost as soon as I had her dried off. I am retelling this in such detail because I need to have it referenced to show the doc tomorrow (I often can just whip out ye olde iphone to share details with docs – its quite handy! maybe this means i can charge my cell bill as an FSA item?!?! yes? no? 😉 )
Anyways – it was scary. It shook me up – and lots of stuff that this kid does never shakes me up. It was the combo of everything that happened in that hour, plus 5 days of not eating. For all outward intents and purposes, she appears to be ok, which is why i haven’t ran her to ER yet. But it does do my heart good that we will be seeing her doc tomorrow. I hope they are able to explain it with some innocuous little reason that i am just overlooking. I hope it doesn’t point more towards her needing a GJ tube place (where she would eat into her intestines vs her stomach). I hope I am making a huge leap in thinking that’s where we’re headed.
But most of all I hope she wakes up from this nap completely fine and back to her normal. I hope she just had to push a lot of yuckies out of her system and now she’s recuperating and wakes up starving.
So that’s our crazy day for today. i am sure i’ll have more to catch up on later. cause i am good at procrastinating on my four mile long to do list by blogging instead.
stay classy bolingbrook.


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  1. Terra, you have a gift for informativeness/wit all rolled into one. If you ever write a medical journal, I will read every word.

    BTW, Rob has become addicted to your blog as well.

  2. Hello Miss Terra…

    It’s me Sarah….since we missed a chat on FB I thought I’d check on you here.

    My thoughts. I could actually totally see Wesley’s motility getting worse for a short time after shots…mind you..especially if he had any kind of fever…even just 99.

    I know for him too…he has a limit that was particurially evident when he was a baby. If you ever fed that boy more than 4 oz every 3 oz….he would puke everything back up. Guaranteed, never ever failed…didn’t matter if he was hungry or not, I might as well of fed him the bottle and then let him heave it right back out in the toilet.

    So what I’m saying…is don’t stress too much over it…yet. Give it a few more days to see if her body calms down…maybe even give her some tylenol just in case. I can’t remember if they’ve ever tried any kind of motility med on her…but some kiddo’s just need a little bit to jump start there tummy’s again. And if you do have to resort to a gj tube….there are plenty of kiddo’s that do both g and J. When the going gets good they do g. When the going gets puking…they do j. So don’t give up hope yet.

    I’ll say a prayer tonight that tomorrow will give you some kind of answer or direction or at least something to hold onto.

    Sarah mom to Wesley p2p

  3. I will pray for today’s appointment!

    Thanks for the candy from last nights meeting! It hit the spot at 9:45 last night~

  4. just your latin lady keeping it real…

    viva la vida is actually “hooray for life” like “viva mexico…viva!”

    all that to say that my prayer for you guys is that through the muck and the guck, through the certainty and uncertainty, through the drives to milwaukee and the stillness of manhattan st., god would protect that part of your heart that says “hooray for life!”

  5. I’m afraid I need your help. My daughter Ruby was born July 20, 2009 with Tetralogy of Fallot, Pulmonary Atresia, MAPCAs, and 22q11.2 deletion. She was given a G-tube for feeding, but had SEVERE reflux and could not handle stomach feeds. We then had an NJ tube placed for jejunal feeding, but we need both the G & NJ replaced with a GJ tube capable of venting the G 24/7. Have you had this done? Which hospitals are you working with? Please, your advice is greatly appreciated. We have been at the NICU in Milwaukee, Wisconsin – at Children’s Hospital – they seem to be incapable in this area.

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