a happy mess


(Cracked wall courtesy of house crashing, teen driver.  How’d she walk away from that?)

Corrigan’s virus turned out to be roseola, talk about a crazy rash!  We are still dealing with daily vomiting and I put in an anxious call to his team who have made a 3-day change to his diet in hopes of giving his digestive system a little break.  It is a bit tricky cutting back on his protein since he has had weeks of less-than-optimal nutrition from all of the vomiting lately, but he is obviously nauseated most of the day and the frequent puking is piling on even more anxiety for him around eating/swallowing.

I have so many concerns, when we got the g-tube I never expected that we would slide back to nearly 100% tube fed, but here we are and it stinks.  He is never going to make positive strides in his eating until someone figures out why he is so nauseated. I have concerns about his esophagus and stomach, he had peptic ulcers when he was a toddler and I worry maybe they have returned.  His stomach also empties very slowly which causes backup as the day moves along and more timed feeds are added, and I also wonder if he has developed a milk sensitivity.

I want a better answer about his tonsils because every single medical professional that looks into his mouth makes a remark about how large they are, but no one wants to put him under unless absolutely necessary.  He needs anesthesia for a repeat endoscopy so I wonder if both can be done at the same time?

I also have concerns that his g-tube was placed too high on his torso because as he has grown, it now is nearly sitting right against his bottom rib. It breaks my heart to think we might need to re-position the g-tube, and leave yet another scar on his little body, but we are obviously far far far away from ever saying goodbye to the feeding tube, we may have no other choice.

Corrigan is doing well otherwise, though he is extremely pale with dark circles under his eyes.  He looks like he hasn’t slept in a month, when in fact he is sleeping better than he has in a long time.  The labs from our recent ER visit showed that he was anemic again, but due to his stomach issues, his team has pulled his iron supplement from his daily regimen, to see if that might be causing him distress.

The poor boy is a happy mess.  He is still laughing and learning, sleeping well and playing normally so I can’t complain too much, but I am hoping that we can make some changes that will help him back to better health very soon.

7 thoughts on “a happy mess

  1. We just also had this virus not too long ago. Abbey has a bunch of GI problems although the doctors have not been able to figure it all out yet. But, I do know a few things to help with the vomiting since she vomited every single meal for her first two years of life!!! If Abbey vomits now it is usually our first sign that she is coming down with something. So, what I do is lower her rate and volume and then dilute her formula so it’s half water or Pedialyte and half formula. We stay on that mix until the fever is completely over then work our way back up even if it takes a few weeks. And yes, it is very discouraging to see any weight loss because for some kids every ounce gained was a battle to achieve. If you want to talk about it further just email me. Also, you might want to check out infantrefluxdisease.com. Those are some really smart moms that can walk you through the tube stuff, ulcers, delayed gastric emptying and GI tests and meds. And, I just saw an article today on feedingtubeawareness.org about “why does my child vomit?”.

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    • Jennifer, solid advice, thank you so much!! It is hard for us, because I don’t want Corrigan to lose weight either, but because of his metabolic disorder it is more about not being able to maintain the critical/precise daily intake to keep him from becoming catabolic (therefore putting his brain in danger). I have to get a precise amount of calories/protein and fluids in a 24 hour period and when he is vomiting a third of that back up, we can find ourselves in a crisis pretty quickly. Corrigan has gone through this cycle before, a handful of times, and for some reason (Praise the Lord) that other than his aminos tanking, he hasn’t become hyperammonemic. I’m further encouraged that he has weathered a good old-fashioned childhood virus without the slightest bump in plasma ammonia-he is a tough bird and likely not as fragile as I have feared, but after 17 days of insufficient nutrition I am starting to get more than antsy. I will arm myself with all of the knowledge I can from the website you recommended (infantrefluxdisease.com) and share some of the ideas with his team on Wednesday. Thanks again!!!

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  2. Yeah, I was not sure about his metabolic stuff. Is he on a special formula? We were on a 100% elemental formula for a while and it does help with the emptying issues. If he is emptying slowly it can cause nausea also. Does he see a GI on a regular basis to address these issues?

    I don’t know if any of this stuff will be useful but for general tube advice, I looked up the link for you because it was hard to find the article about vomiting.

    http://www.feedingtubeawareness.com/Blog.html

    Hope he feels better soon!

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    • His formula is one for inborn errors of metabolism and is protein-free/amino acid free. He gets most of his nutrition from Pediasure added to the formula and some other things. I am just so thankful we have the g-tube but no, we don’t see our GI doctor frequently at all. I need to see if I can find a pediatric GI doctor closer, it is always so difficult to get into the one we use now. Even with the g-tube, if it gets to the point that he can’t keep down 60ml an hour (continuous feeds) then we have to admit him for IV nutrition. We have only had to do that twice before, and he seems okay right now, but until we get labs back Wednesday evening I don’t know for sure. I am packing Corrigan’s and my overnight bags just in case.

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  3. Pedisure is hard on some kids tummies and really hard on kids with delayed gastric emptying. I have some unopened cases of Pediasure Peptide 1.0 that I don’t need if you would like to try it. The nutrition should be the same but the proteins are already broken down. But, Elecare Jr. might be something to look into also if you are concerned about possible allergies and emptying issues.

    The link posted above is the link to the article about reasons why tube feeders vomit not just the main website. I just wanted to clarify that since I did a poor job of communicating that!

    Well, I will say a prayer for Corrigan tonight that his labs will be within normal range and that he won’t have to be admitted to the hospital and that all the nausea and other GI stuff will get figured out soon by his docs.

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