who me worry?

Uncertainty is my nemesis with this disorder.  Constantly watching for changes in personality.  Waiting for signs and symptoms.  Never sure whether my instincts are worth trusting or not.

I heard Corrigan gagging in his sleep tonight. I raced in as he was vomiting (while sound asleep) and managed to quickly turn him to his side so that he did not aspirate.  Moments later he vomited again. After his second spew he sort of woke up enough to look at me confusingly but really, he just wanted to go back to sleep.

Here I am, once again forced to wait, watch and trust my gut. {sigh} After a quick bath, bed linen changeover and a few songs on my iPod Corrigan seems perfectly fine.  Since Wednesday he has been fighting a cold that has him pretty junked up with yuck and he never does well when his nostril breathing is compromised.  I heard him coughing just before I heard him vomit so I think that some phlegm settled into his throat as he slept and when he went to roll over he triggered a cough which led to his vomiting. Once that kid starts heaving nothing stops until the tummy is empty.

Which provides me a quandary since he was on the last 30 minutes of his night feed.  There were meds in that mix.  How on Earth do we figure that out? Oy. Looks like an early morning call to his team is now on the schedule.

A year and a half ago, if Corrigan vomited we raced to the ER. No questions. No hesitation. Yet, after 16 months of no hospitalizations due to hyperammonemia, and several trips to the ER after a vomit that have yielded perfectly normal ammonias, we no longer freak out at the first sign of puke. Mark, after watching Corrigan in the tub for me a few minutes while I stripped Corrigan’s bed and raced it all downstairs to the laundry, didn’t even say goodnight as he crawled back under the covers and, I suppose, was able to drift back into dreamland without worry.

I will not go as easily to sleep tonight, that’s for sure.  The ER bag is in the car and I have my mental list of things to grab at a moment’s notice.  Part of me wants to do what I always do, get it all out on the dining room table, lined up and ready to fly out of here but I am trying out this new system of staying calm and being reasonable.

I am hopeful that this is the end of excitement for the evening and that my next post will be dreadfully boring, bearing no news of hospital visits or ammonia numbers.

Until then, I am off to sleep on the floor beside Corrigan’s bed. Maybe with one hand on him at all times. You know, totally reasonable.

ps. I am completely over this NaBloPoMo thing.  Only two more days of mandatory blogging and then I am free to blog as frequently, or infrequently, as I want.  My goodness, this month has felt three months long.

7 thoughts on “who me worry?

  1. Here’s to trusting your gut. It’s so hard to let our kiddos do well, normal kid things, even when it comes to being sick. Take some small comfort, that I am up watching over the babe and sleep is unlikely for me as well. Hugs to you and the boys~Amy

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    • Oh Amy, you have a vigil tonight that I cannot fathom. Your precious boy is such a fighter. I can totally see you standing guard over him this evening. I feel like a crap-face even complaining in the least knowing what you are dealing with. You must think me an insufferable brat sometimes. Thinking of you and Captain Snuggles. (((hugs)))

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  2. Mindy you have a big responsibility on your shoulders and you are doing a fantastic job. I know that you have to be extra, extra careful but by the sound of your descriptions it does sound like he is vomiting may be due to his cold. My tube feeder does the exact same thing at the slightest cold symptoms. What I usually have to do is mix half formula and half Pedialyte as her tube feed for the first day/night. Then I progressively add more and more formula until she is back on track in usually about 2-3 days. Having a pillow wedge or something to keep him more up-right during his feeds is also very helpful especially during a cold.
    It is also common for children with reflux to have puking with colds. I have been wondering if his night wakings might have anything to do with reflux. Sometimes it is not as visible through vomiting or spitting up but can still cause tummy aches or burn at night and thus sleeplessness. I guess it is always a consideration for a tube feeder as it is a very common ailment for them to get.

    I hope he feels better soon!

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    • Jennifer, what GREAT advice. Thank you! I never thought about reflux. I assumed if he was not spitting or throwing up then it was not reflux. His meds are so caustic though and he DOES get meds in his night feed so thank you for bringing that up. I will mention it to his team. I really appreciate those helpful tips! I also did not know that tube kids need to be pumped slower when they have colds. Maybe I need to spend more time on support group boards for moms with tube fed kids. I really am still in the dark about all of it, except the basics.

      Thank you again!

      Mindy

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  3. haha – not at all~ I still worry over every little belly ache, every rise in temp. The reflux is a good point – when my boys were on the buphenyl & arginine, they were also on prevacid to help with reflux. Definitely something to discuss. hugs right back at cha!

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  4. L is on prevacid for reflux. I have been told that they are more prone to reflux. L vomits a couple times per week normally and her team says that that isn’t abnormal for UCD kids. Also, last week she threw up once everyday for a few days – which happened to be a couple days before she was admitted – all due to her cold and congestion.

    Ugh – the worry is exhausting. And how do the hubbies settle so quickly?!

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    • Corrigan was on prevacid too, over the summer, but we were told that they do not like to use it long-term due to the side effects of prolonged use. I will have to ask again.

      Corrigan usually never throws up, nor were either of my boys spitter-uppers, so we were happy when he was younger to know that when he puked it meant SICK (whether regular tummy sick or UCD sick) but it was pretty obvious the other evening that he threw up because of his cold/congestion-still makes sleeping peacefully impossible since we know how badly things can go, and how quickly it all occurs.

      I slowed his feed down to 80ml last night and he did just fine and was actually more miserable with his cold yesterday so I appreciate the wise advice! It worked. What a relief.

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