It is 4am and I cannot sleep. My thoughts are swirling in my mind and I know that the only way to stop the the ride is to spit them out right here.  In general, 4am blog posts are never happy ones.  They are usually the ones that are soaked in fear, the ones that you can smell the anxiety that hangs on every word but tonight I am just pumped.

Adrenalin has me folding laundry at 3:43 am, stuffing more into the wash a few minutes later and then looking all around the house for more to do.  I could run a mile right now. If Corrigan were not wide awake too (I can hear the muted, slightly-creepy laugh of Elmo on his upstairs television) I would at least walk a lap or two down the road alongside the house.

It was nothing, really. Other than, perhaps, two full cups of Petra’s high octane coffee earlier in the evening and a big cup of relief that Corrigan is not sick.

I know, he has been not sick for 21 months now. And it is amazing how quickly I adjusted to the stability considering the basket case I was for the first 16 months of his life.  Did you know that I cannot go back and read the blog archives of that first year?  Other than the few posts that were more factual, the ones that I link to under the Citrullinemia tab at the top of this page, I am still not ready to go back and read those earlier posts that were drenched in desperation and uncertainty.  I am glad that they are there, the true purpose of this place is to archive all of the parts of this journey, but I am still not far enough away from the trauma of those first 14-16 months to go back and reminisce.

When I went to bed tonight I made one last check on Corrigan and his feeding pump and noticed that he still had a few ounces of formula left and I bumped back the rate of feed so that it would last another two hours instead of waking me (and him) in 20 minutes.  I was pretty hopped up on coffee and lemon cake (best cake ever, thank you for being born Petra!) so I was hours past my normal bedtime and the gritty eyes and warm bath of sleep was tenuous, at best, so I was hoping for at least two hours.

2 1/2 hours later I was jolted awake at the sound of a different cry from the room next door.  I glanced at the clock and wondered how I missed the beep of his finished pump and noted that I still did not hear it as I walked through his door but the moment that thought left my head the smell hit my nose.

It has been a long time since I have gone into Corrigan’s room and smelled vomit.  When he was an infant I would find him asleep in puddles of it and we would run him to the ER in a race against the clock to save his brain. To save his life.  Nobody is going to say, “I love puke” (except for the weirdos that are going to be finding my blog now by searching I LOVE PUKE, right?) but for those of us UCD parents whose children’s bodies blessedly tell us of the building danger by vomiting, puke is something we welcome.  We do not love it (weirdo!) but we welcome it.

Vomit tells me to act fast.

So when I walked into Corrigan’s room tonight and was hit in the face with the sickly sweet smell of digested metabolic formula my brain instantly kicked in to emergency mode.  In the 7 steps from his bedroom door to his bedside I was already thinking about where his emergency bags were in the new house.  I was already trying to remember if the car seat was in the car or the SUV, which door was I going to take my sick little guy out to get to the vehicle fastest. Should I wake Mark?

The first thing I did was the very thing I did every single time I checked on Corrigan for at least the first 420 days of his life…I put my hand on his chest to feel if it were wet.  To know, even in near-darkness of his bedroom, if he had thrown up.  So many times I have touched him to find him soaked, flipped on the lights to see for sure and raced him from home to hospital.  So many times I didn’t even realize I was holding my breath as I shakily reached out every hour, all night long, just to make sure he was okay.

I had not done that in months. A year. Nearly two years.

I have often wondered if after all of this time, if vomiting will still be Corrigan’s “sign.” Many kids with Urea Cycle Disorders do not necessarily vomit every time their ammonia is high. Like I said, we are thankful for vomit in this house. But after 21 months, will Corrigan present the same the next time he is hyperammonemic?  And there will be a next time. We are not so naive to think that this long period of stability is forever. We know that danger lurks, especially in the winter when illness is more prevalent, and once we get him into preschool, dear God…please keep him safe.

It is amazing how it all comes back to you.  Like riding a bike, you never forget what needs to be done to save your child’s life.  I might not know exactly where his ER bag is since the move ( don’t worry his protocol is in my glove compartment, in my wallet, scanned into my phone and on file at the hospital)  but the rest is right there, on the tip of my tongue…paging Hopkins, overseeing the blood draws, pressing upon the ER staff to move quickly…faster please…checking the D10 bag, explaining how to access his notoriously wiggly port…it is all still there.

As soon as I felt his chest and found it soaked, I ran over and turned on the light. I noticed that he was twisted up in his tubing and was half-awake and shivering. As I unrolled his soaked “blankie” from around his torso and carefully untangled his tubing I was calm.  My mind was racing but my hands were steady.

And then I saw it…we fed the bed.

Thank God.

The relief was intense.  In that instant my calmness went away and my hands began to shake, just a little.   That stupid little medicine port on the extension tubing, the one that we never use, had somehow popped open in the few hours since I had last checked. Instead of feeding Corrigan, we fed his bed.

“Feeding the bed” is common for tube fed folks but rare for us. I do not know why we fare easier than others but I often see other tubie moms lamenting this issue on message boards but counted us fortunate that this has only happened to us a handful of times. Actually, now that I think about it I think that this is the very first time it has happened since we went from a PEG Tube to a G-tube button.

It is amazing the mess that 3 ounces of formula, Pediasure and goat milk can make. Granted, some of it was probably from his stomach, as the bag emptied and his tummy then emptied back out (gross, I am sorry to those that are not used to this topic) through the open port.  And that smell.  Ugh. I have stripped the bed, cleaned the toddler and washed my own hands four times but I can still smell it on myself.

We are both awake now. Wide awake.  His favorite blankie is visiting the washing machine and he will not take a bottle without it so he is enjoying his movie (I think I hear Blue’s Clues now) while I sit here and vomit out my thoughts on the blog.

That’s about enough puke talk, Mindy.

Tonight was a good reminder.   Citrullinemia does not care about how cool it would be to make it to Corrigan’s 2-year “no high ammonia” anniversary. (July 3rd!)  Things could change pretty quickly and we know it is not if Corrigan gets hyerammonemic again but when. I need to always be on my best game. I cannot let good health and stability make me unstable in my preparedness for a hyperammonemic event.  I do not need to hold my breath from fear each time I enter his room but I need to be ready to act quickly and calmly.

If he were sick tonight, it would have taken me a few minutes to get myself together, and I’m sure I would have been fine, but I want to be better than fine. I want to be the Mindy that was ready at the drop of a hat, the 2008 Mindy that could have accessed his port myself, slapped that tube of blood on ice and raced it to the lab on my own if need be.  Complacency is NOT an option.

I am not even a little bit sleepy right now. I am actually quite happy despite the fact that Cor has therapy in 4 hours and tonight was not a good night for “no sleep” but it is okay.  I would rather be awake, waiting on his blanket to dry than sitting in the ER with a sick little boy, whispering prayers for numbers under 100.

I think I am going to go find the ER bag though.


6 thoughts on “relief.

  1. I know the feeling of checking on your child I do it at least 5 times a night! I worry myself alot that her ammonia will be high and I will be asleep!
    What do u have in his hospital bag? I just always bring her meds and her er letter! Is there anything else to pack?
    Alysa has had good levels of ammonia, but her liver tests r pretty high lately! Her last high ammonia was in Oct. When she was very tired and I took her into the er they told me if I wouldn’t have brought her in when I did she could of passed away in her sleep! Now I get so worried that I hardly sleep anymore!
    I wish Alysa would puke when her ammonia is high but she doesn’t just gets real latargic and it’s hard to tell if she is just really tired or her ammonia is high!
    Glad that it was not him being sick that is a true blessing! Take care and god bless u guys!!! 🙂


  2. Glad it was a false alarm. I can only imagine how quickly your mind snaps into alert mode when this happens. I hope you find a quiet time some time today to catch a nap. Love, Dad


  3. Dad-I was fully awake in .00002 seconds. I was so awake that even when Corrigan finally went back to sleep around 6am I was wide-eyed. I finally fell asleep (with the help of some melatonin) around 8am but then the turkey woke up at 9:30 so it is going to be a long day!

    Kelly-we are fortunate that, in the past at least, Corrigan’s main sign of trouble was vomiting. I spend a lot of time with him (uh…every waking moment of his life, lol) so big personality changes and lethargy are things I keep an eye out for too. Wobbly neck, glassy eyes…those things too but usually the vomiting comes first. Corrigan is pretty high-octane though…it is go,go,go all day long so anytime he slows down and just hangs out on the couch my internal alerts start beeping!

    All you really need for the ER are the things that you mentioned but I like to have a few bags packed and ready to go because we have spent, at times, over 13 hours in the ER waiting for transport to Baltimore before. I have plenty of people that would be willing to run us up anything I needed but in his ER bag I keep three changes of clothing (because of the vomiting) and extra blankie. I have a folder in there that has copies of all of his prior ER paperwork ( I dont know why I just keep it all ) and notes that I have jotted down over the last few years of visits. There is a small plastic container with cereal/granola bars for me, diapers in case the ER doesn’t have his size handy and we have to wait…a few small toys that might keep him entertained (though right now all he needs is my phone to play with and he is happy) and a few dollars worth of quarters for the vending machines.

    I also have a “regularly scheduled clinic” bag that is a bit bigger, more of a duffel size. For when we travel the 2.5 hours to Baltimore and in case something goofy happens and we are admitted. It contains much of the ER bag stuff but also has a change of clothes/underwear for me. Travel size shampoos etc. A book. Hair ties. My Dad lives close to Hopkins so he is always great about running me in anything I need and hot meals.

    And I also keep an EXTENDED STAY suitcase packed. It has rolling wheels. If we make it to the ER and he is sick enough to have to be transported to Baltimore by helicopter or ambulance I have someone run it up to me from home. It has several days of clothing for both Corrigan and I, all of the toiletries I might need, extra soft blankets for Corrigan, more toys, stuff to clean the hospital room myself ( I am weird, I know) books, that kind of stuff.


  4. Mindy,
    I am sooo happy he is alright. I am also glad that it seems that you get more sleep these days, not including last night.

    Still praying!



  5. There is no doubt in my mind that you would have been fine, if the situation would have been worse!! I’m so glad you just fed the bed. We are noted on doing that around here!! I have a hospital bag too, Ryan says we could stay a month or so in it. HAHA


  6. Thank you Mindy time to make up a hospital bag, Alysa has been admitted quiet abit since she turned 10! Now she also has diabeties, we r looking into getting a dog to detect the high and low sugars! They have about the same side effects that high ammonia has!
    Alysa gets a ride in the ambulance to the other hospital when she is admitted! The nice thing is that the hospital actually feeds us when we wait for transport! She is doing good except her liver tests r pretty high! Glad everything is good with your little guy!
    I spend all my time with Alysa too so if I see her acting weird I start worring myself and get everything put in a bag then leave after calling her dr of course!
    Alysas sugars though is a big problem now bc I can’t seem to keep them under control, they wouldn’t put her on meds bc of the ammonia going up! So we r stuck! Just glad her ammonia has been good for a few months now!
    Take care hun and thank you, I’m making a bag so I have on hand just incase!!! 🙂


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