3 naps+1 day…the rest of the story

I wasn’t going to blog about this for a few reasons.

I changed my mind.

On Monday, Corrigan was having a pretty good morning.  This following a rare “sleep-through-the-night” event the night before.  When I awoke and realized that he had slept for 9.5 hours straight I was initially, well…a bit greedy…thinking, “I could have used two more hours!”  I don’t think I will ever be caught up on the amount of sleep I have lost due to Corrigan.

A few hours after waking, Corrigan seemed tired again so, while slightly concerned that he was so sleepy, I put him back to bed around 11am. He slept until 1pm and only woke then because I went in to tickle him gently awake (he had slept through lunch!)

At his next bottle feed I decided to try the pump again so that he could get outside and get some exercise. We walked the entire 60 minutes that his pump was set to run.  At one point we talked to the neighbors for a bit, he made friends with a neighbor’s year old grandson and did a face plant on the sidewalk.

Immediately following his pump feed, once indoors, he fell asleep again.

(He still has his “milk blisters”…aww)

At the 2nd nap he was zonked (not the above photo…all photos were from third nap) and I went in to wake him after about 1.5 hours.   At this point I was getting a strange, uncomfortable feeling in my stomach. Corrigan barely naps once a day. Not twice.

Monday was also Mark’s first day back at work in nearly a year. Old job. New location. I didn’t feel consciously anxious about Mark being nearly 40 minutes away (and with our only working car which isn’t our car anyway) but by 6pm I knew I needed another set of eyes to check out Corrigan.

Remember, lethargy is a sign of increased ammonia which, as I am sure you are sick of hearing, can cause brain damage, coma or death within 8 hours if left untreated.

I had made a big dinner which we all ate, once Mark was home, in peace and quiet because Corrigan was asleep. Again.  *cue Mama freaking out at this point*

He had fallen asleep, just moments before Mark walked in the door, on his beanbag.  He looked uncomfortable so I moved him up to the couch but put the beanbag on the floor next to the couch in case he tumbled off.

(yeah, he tumbled off…and barely hit the bag!)

We ate our dinner and then I wanted Mark to try to wake Corrigan…to see if he found him “difficult to rouse.” We picked him up from his beanbag and moved him to the couch. We propped him up, we gently tickled his feet, we sang his favorite dancing songs and the most we got was this…

(He seems “out of it”, right?)

It just didn’t make sense that he would take three naps in one day. We were one week from surgery and I was worried. Maybe he had some sort of infection ( though no fever?) from the procedure. Maybe his little body was making all of these extra proteins fighting some sort of hospital-acquired super bug and ammonia was multiplying as we were talking?

We decided to err on the side of caution and take him to the ER to have his ammonia levels checked. Of course, by the time I finished running around gathering up ER supplies and re-packing the hospital bag (that was not yet unpacked and re-organized from last week’s trip) he was up and running. Literally. Running. Laughing. Being totally normal.

Blah. I succumbed to my fear instead of my rational head though. I had watched him sleep, and woke him before his own body directed him to do so, all day.  It was nearing bedtime at this point and when he acts strange before bed I feel the most uneasy.  What if I lay him down, the ammonia is rising, and I shut the door on a tragedy?  He would simply fall asleep and probably not wake. Ever. And I know that I can be slightly dramatic but that is for real with this disorder.

The uncertainty of this stupid, hateful disorder is one of the hardest things of all.  I find myself wishing, all of the time, that they could just make an ammonia tester, similar to a glucose monitor, that would allow me to obtain a clean, fast-flowing sample of blood (at home!) and return a clear, reliable result in minutes.  Instead, I am left to observing possible signs of impending crisis. Really clear ones like…too sleepy. Or, clumsiness.

*rolling my eyes*

(gratuitous “little piggy” shot because the blog post needed a photo right about here)

Long, long story short, I packed up the poor kid. Took him to the ER. Exposed him to about 45 people who all looked like they were dying from the plague (the staff put Corrigan and I in an empty room so that we didn’t have to wait among the cootie-folk…they rock) and forced him to endure yet another round of blood draw/chest port access/being retrained by 3 people.

For an ammonia that came back 34.  And blood labs that showed no infection.

Mom of the Year, I am.

All I could think, and yes I know that it wasn’t ladylike, was “suck, suck, suck, suck, SUCK!”

Everyone acted according to the emergency protocol.   The staff worked quickly and took great care to make sure that Corrigan was a priority.  He was fine.

This was the second time, since July, that I have taken him to the ER with concerns and had great ammonia results returned. My fear is that if I keep this up, if I keep getting this wrong, if I lose my instinct than I become that Mom that cried wolf.  That maybe, over time, the staff will be less likely to jump to their feet when we walk in the door…that his blood won’t get priority at the lab…that I will be that mom, the one that can’t tell sleepy from lethargy.

*sigh*

When I was ready to leave, the doctor came back in and said something along the lines of, “It must be hard to never be able to put your feet up, have a cup of coffee and enjoy the fact that your child is napping…of never being able to let down your guard” and I wanted to cry.  I wanted to thank him for summing it all up in a way that let me know that he understood why I was there. That he gets the disorder and all of the anxiety that it entails.  That he understands that I would rather let my baby get some sleep but that I can’t. That I am not just being insane.  That I can never ever relax because what if….what if…..what IF?!?!?!

blah.

I wasn’t going to blog about this. This second mistaken trip to the ER…mainly because I know a lot of newer Urea Cycle Disorder families have found themselves at this blog.  Some are just reading and lurking and others have emailed and made contact and I want to be an example for them.  I hated hearing the words, “you will know” from doctors when I would pleadingly ask them HOW WOULD I KNOW when Corrigan was hyperammonemic.

I had hoped that by year two we would have some sort of perfect grasp on this mess.  That I would know Corrigan so well by now that there wouldn’t be a chance in Hades that he would have so much as gas that I wouldn’t know about. Yeah, missed that peptic stomach ulcer.  Still can’t get the “is he, or isn’t he sick” thing right either.

All I want is to see this


and think, “Aww, how cute, wonder if he needs a blanket”

instead of, “Aww, crap. I wonder if his body is failing to break down that nitrogen and ammonia is hurting his brain”

This stuff is hard.

and I have no idea when it will get easier.

I need a hug and I imagine, so does Corrigan. Poor kid. Tough kid. What a life.

19 thoughts on “3 naps+1 day…the rest of the story

  1. Just said a prayer for you and Corrigan. I can’t imagine how heartbreaking this must be for you. That post had me in tears!
    But good job, Mama! You did what you thought best for your son. And ultimately, that’s all you can do. Hope you got another good night’s sleep.

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  2. (((((HUGE HUG))))

    Love you Mindy! You did exactly the right thing! It is always better to check and get the 34 rather than not get it checked! I would have done the exact same thing in your position. Oh how I have longed for the same home monitoring system. One day, sister, one day…

    I think the hospital stays take a lot out of our boys. Not sure if I told you, but after our last stay, Ibrahim slept from 9 pm at did not stir once that night. Arfin got really worried, because he usually wakes up at least once, and we tried to wake him up around 7:30 am. Of course, once he was up, then he was up. Laughing, crawling around. Same thing. Freaks you out!

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  3. I’m glad you done this blog! And when Lynlee is two and I think I should “know” by then I can remember that you didn’t either and that makes me feel better knowing I’m not the only one!

    I know the doctors told all of us that we would just know. Well they didn’t just know when Lynlee’s was 340 she was showing no signs! I totally agree that this disorder sucks, but I’d rather be safe that sorry even if that means having them tested too many times for no reason!

    And at least you slept better knowing he was safe Monday night!

    Much Love MAMA!!

    -Stacy

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  4. Never apologize for being a concerned parent! I have a healthy 2-year old and if one day he decided to take 3 naps instead of his normal 1, I would definitely be wondering if something is wrong too. You did the right thing by taking him in. You also did a great thing by posting your trip to the ER on your blog, because those parents lurking and seeking out information about their child’s condition would want to know that it’s okay to be concerned. Beautiful pictures of your sleepy baby, he’s too cute!

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  5. I really feel for you and the fact that you need to be on guard at all times. There never seems to be enough “carefree” time,does there? I was wondering if, with the pump, his tummy is being kept very satisfied. Something he has hardly ever experienced. You know such a feeling makes us lazy and wanting to nap. I’m not trying to over simplify things here. Just offering up a thought that just popped into my head.

    Call me if you need to talk and bounce some things off this old head. I love you guys and always enjoy your blogs. You convey your feelings so well!

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    • Dad,
      In retrospect I think that you are right on the money. I think that Corrigan’s M.O, all of this time, has been to graze most of the day. An ounce here, two there….he has never really felt “full” so yeah, I think that once he gets a tummy full he feels like we do after a big meal and gets sleepy. It is just so foreign to me that he is napping MORE now, after surgery, when I thought that because he was off of his nap schedule in the hospital , and then the move to the big boy bed, we would be losing our ONE nap a day…not adding more.

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  6. You are the best Mommy ever. God gave Corrigan to you because he knew that you would take the best care of him. There was noone else cutout for the job except you! Do not EVER ignore your built in alarm system. It only takes one time of ignoring it and the alarm system being correct to have horrible results. *HUG* to ya. I am praying that it only goes off when needed!

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  7. I totally agree, and have done the same thing with both my girls several times! Sometimes I was right, other times I was wrong, just like you! Ugh- it can be so frustrating. Can I suggest another option that may be going on- he may be growing. For the first time in awhile he is getting everything that he needs nutritionally, and perhaps his body is putting it to good use? My C did that after her tube went in. She slept and slept, and grew almost 3 sizes in 6 weeks! It was crazy! Just a thought.

    BTW- any packages arrive yet?! 🙂

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    • Abigail! I was just thinking about you!

      Yes, the backpack arrived. Oh and the ducky shirt, I have plans for that, just you wait! Thank you for sharing some special things of Caroline’s. Your little note went straight into Corrigan’s memory box. I really appreciate that you sent that stuff (I saw how much it cost to ship it and almost fell over!..sheesh!) and will put it to use. Thank you so much for thinking of Corrigan. Your kindness is overwhelming and much appreciated!

      You might be right too about the growing. Mark mentioned that while I kept pretty good track of Corrigan’s bottles, the truth is that he was losing probably a few ounces a day between what soaked into the carpet when he dropped it on the floor or in his bed etc…maybe not two ounces, but a bit. Perhaps now that he is getting EVERY GRAM..his body is able to do more with what it is being given! Which, looking at him I think he looks so peachy and, odd to say, plumper? I was attributing it to the increase in fluids that I am able to get into him now. He gets the formula through his tube, so he gets the delicious drinks by mouth at will and then the 30cc of water I am using to flush the tube every time I access it (With his med schedule and his formula schedule, that is 8 times a day I flush!) so he is uber hydrated and looks GOOD!

      I am excited to see if we got any weight gain/growth out of this experience when we go back to Baltimore on the 25th of May!

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  8. to everyone else that has replied today:
    Thank you! You all seem to think so highly of me, which is strange, considering that if you peeked in my windows you would see a mama with very little under control (at least it feels like that) and way too many occasions when I allow Satan to whisper in my ear about Corrigan.

    Your support through all of this is very appreciated!

    Mindy~

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  9. That doctor put it perfectly. And you were a good mom to go take him in to be checked. It’s better to be safe.

    I love the shot of his little feet.

    Thanks for stopping by my SITS day on Monday!

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  10. Don’t give up on your intuition! You really do know him and his habits best and as parents we always have to be the first advocate for our children. I hope you go to the ER 50 times and it turns out to be *nothing.* Normal is good. You are a great mom. Wish I could give you a hug in person and cheer you on.

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  11. Mindy,

    Sending you a virtual hug! Also, just want you to know that even a a 37 year old OTC patient sometimes I can’t even tell what it is my UCD and what is just a normal “bug”. That is when I end up in the hospital…when I don’t jump right on things when I don’t feel well.

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  12. You know I just discovered you blog recently, so I’ve been poking around, getting to know you and your beautiful Cs.

    When I read this, I forwarded the link to a friend that works in designing & making medical supplies. We gotta put the bug in the right ear!

    As an RN, I would tell you to go in EVERY single time you think you need to. We’re there, 24/7, *for a reason.* 🙂

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    • Thank you Leighbra! I am happy to hear that the nurses do not mind a worried mama bringing in a non-sick baby. I hate going in with an instinct and being wrong…but really, being wrong means that everything is okay…so that makes me very happy..I just do not want to weaken my credibility with the ER team, you know?

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