on the road with Corrigan

After feeling uneasy for more than a few days, we decided that Corrigan needed to see his genetics team a few weeks ahead of his November 17th appointment.  His energy dump, on Halloween, really kind of freaked us out.  Don’t get me wrong, it was really reassuring to get a solid 37 number for his ammonia but there was obviously something that was knocking the wind from Corrigan’s sails and that concerned us.

The team was really understanding of our short notice and squeezed us in for 11am today.  Due to the quick scheduling I did not have time to ask any of my sometimes-ride companions.  No big deal, Corrigan and I have made the run into Baltimore by ourselves a handful of times before. Not to mentioned the dozen times that I found myself driving alone, chasing the ambulance that was transporting him to Johns Hopkins.

Anyway, I could narrate the entire afternoon or I could try, for once, to be succinct.

Ha!

(Couldn’t leave “night night” at home. I think that his blankie is crumbling)

The trip down went smoothly. It dumped rain from Hancock all of the way East but traffic was light so it didn’t make me too anxious. My backseat passenger slept for about 30 minutes on the way down and then woke in a wonderful mood. He spent the remainder of the trip “singing” along to the radio and playing with his fingers.

(Corrigan finds parking garages to be a bit spooky. They stress me out too, kid)

The appointment went well, though the doctor was not in the building today but I had Corrigan’s dietitian to myself for nearly 90 minutes and she really gave me some solid ideas to try with Corrigan to build up his iron through healthy natural foods, figure out ways to add fiber to his diet to help out some uncomfortable, and worrisome, digestive issues, and talked with me about a good range of other things that I had questions about.

Little C is growing great.  Despite my worries about his nutrition from his mostly liquid diet, he gained 2lbs since his last appointment and grew more than the expected amount for that same time period.  Oh! And his noggin has increased too which just makes me smile. I love to imagine his beautiful brain growing!

His ammonia was 38, so only a 1 point difference from the result that we obtained in the ER on Halloween. It is nice to see our much smaller hospital’s lab match up with the more prestigious one downstate.

Corrigan watched PBS videos on my YouTube app for nearly an hour while the dietitian and I chatted away. He was so well-behaved and though he might not have been all-smiles and full of giggles I cannot fault him a bit. The poor kid had been held down and jabbed in the chest twice already this past week (once in the ER and once during a scheduled port-flush) so he was understandably ticked off to be back in a hospital again.

I was barely out of the parking garage before I noticed that he was asleep.

(I wish I could just zonk out like that!)

Do you know how you kind of do the “please please please don’t wake up” chant in your head when you have one of those kids that wakes from a car nap the second the car decelerates and you have to pull off real quick to grab a soda from the drive-thru or fill up the tank? You don’t even have to fully stop to wake them, their eyelids automatically snap open when you so much as out your foot on the brake? Yeah, Corrigan is that kid too and twice on the way home I had to stop and adjust his feeding pump because of some stupid shipping/crimping issue with the feed bags ( I think) that  keeps causing the darn thing to beep and stop flowing as it flashed “NO OUTPUT” in my angry eyes.

Both times that I stopped he slept through the parking and two doors closing.  Oh and rain splashing on his face as I stood outside of his door trying to figure out how to get the formula flowing again.

(At the Park-n-Ride for the 2nd pump issue. Right hand mysteriously wants to grab you)

Corrigan slept the entire way home.  I sang loudly and even recorded myself singing along to a song I love on the radio. Just to see how painful it is for people around me to hear me when I sing. Because I love to sing. A lot.

I get okay scores on Sing Star. But I have never had the guts to hit “playback” and hear it recorded.

I played my phone recording back and quickly deleted it. Ha!

I apologize to those in ear shot past, present and future.   I did kind of laugh though.  I sounded like someone that had two good drinks before they went up and sang karaoke with their friends on a Thursday night.  Happy but off key.

I won’t get the rundown of all of Corrigan’s labs until tomorrow. There are a few numbers that I am looking forward to hearing and will determine the amount of time that Mark and I will decide (with his Doctor, of course) is comfortable between appointments for the foreseeable future. Regardless of the results though, I know that 90 days is too long to allow things to progress unchecked, so we will be back to Baltimore before Christmas.  Maybe shortly after Thanksgiving even.

So there ya go. That is me trying to be succinct.  How’d I do?

:::smiles:::

7 thoughts on “on the road with Corrigan

  1. Ugh I HATE when that happens when we’re driving. One trick that helps for us: I put the bag in the front seat hanging so that I can reach it easily. Not sure if that works when you have a toddler who can fiddle with the line more easily – but it has made things much easier for me.

    So glad to hear he’s doing so beautifully!

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    • Katie…do you have any issues with the way that the bags sometimes come folded right at the output location from bag to tube? For some reason lately, they keep coming to me crimped there and I have to use a clothes-pin or massage it/tape it to get it to stay open enough for formula to flow. Frustrates me. I just exchanged the pump two days ago (our insurance rents ours) but the issue was with the charging cord, not the pump itself.

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  2. I love the photos and you do have a nice way with words. I firmly believe that both are great stress relievers for you, I know they work for me… 🙂

    You did well… 🙂

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  3. Wow, you go momma!! I can’t imagine going to Pittsburgh with no help! I would have to stop every time Lynlee has to eat since she thinks its so funny to pull her cords? I’m hoping she grows out of that, soon!
    Oh, and how does Corrigan do eating in the car seat? Lynlee seems to throw up in ours, but not Ryan’s moms. I just noticed Ryan’s moms lays down more, so I’m on the hunt for a new car seat, if we can afford it?
    Keep me posted on his aminos. I know that last check up we had in September they wanted us to go 3 months before coming back. I literally laughed in the doctors face then said, Umm NO!! I settled for 2 months. They did check Lynlee’s aminos when we were there in October and said they looked great! But I’m like you, 90 days is just way to long!!

    Hope your having an great day 🙂

    Hugs!!!

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  4. So you have some peace of mind! Yay! I know you have been worried with such a huge gap between appointments. I am glad to hear he is in a good range with his numbers.

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    • We have the enteralite pump. infinity. There is a big fat piece of super sticky tape on the back of each bag that you can peel off to try and fasten the flap in way that it won’t fold but my last batch was so poorly packed that the “kink” right at the fold was impossible to bend out so I had to use a clothes pin! The new batch came a few days ago and they look fine, flat as a can be!

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