on getting a grip.

I don’t know what is wrong with me.

I know, I know…people have been thinking the same thing about me for ages. ha.

But seriously, I have lost the ability to be rational about illness. Corrigan’s last hospitalization has left me feeling weak and prone to weird bouts of anxiousness. Corrigan has recovered so beautifully, but then Connor got sick and I found myself unable to relax about a simple sore throat and now, a week later, I just feel foolish.

I mean, when a doctor chuckles at your concerns, and I am not known for being a particularly difficult or panicky, it might be time to reassess.

I have to keep telling myself over and over…Connor is not Corrigan.  Corrigan is not Connor.

Let me back up a bit.  While Corrigan was still hospitalized, I caught a really super fun respiratory virus.  I fought it the best I could for a week, but by last Friday, the illness won and I waved the white flag of surrender.  I went to Urgent Care and was given medicine for bronchitis and sinusitis.  That same week, Connor was complaining of a sore throat and his energy level was low.  He looked awful and because Connor is my healthy kid, never even had a barfing illness in his life and doesn’t even catch colds, I felt my anxiety ramping up.

Connor and Corrigan have a wonderful pediatrician but because I was on my way to Urgent Care I took the big kid with me.  I walked out with four prescriptions and Connor walked out with a diagnosis of…sore throat. Because we were seen separately, and because I was feeling so sick myself, it didn’t occur to me that they wouldn’t have even swabbed Connor’s throat for strep.

As the weekend progressed, the pressure in my head and face from the sinusitis was disappearing, but Connor was still suffering with throat issues and on Monday he told me that they didn’t even check him for strep. Angry, I called them to confirm and they asked us to come back in.  Cue the second doctor appointment for Connor and when they were pressing on his abdomen, he visibly jumped when they reached his spleen.  Suddenly, words like “mono” were being thrown around and Epstein Barr and my brain just started freaking out. His strep test was negative and Connor’s rapid mono test came back negative as well.  The Urgent Care doctor left it up to me if I wanted to pursue more comprehensive blood work, and  I did, but then Connor spoke up against it, and the doctor agreed with Connor and didn’t seem to think it was necessary and we walked out with an antibiotic for him “just in case.”

That evening, my mind would not stop racing.  Mono.  Mono.  Mono.

I want Connor to feel that he is as important as Corrigan whenever he has a medical issue. Because he, historically, has been such a healthy child his entire life, I haven’t had a lot of opportunities to show Connor that his health issues were just as much a priority to me as Corrigan’s.  Was I being ridiculous?

Mono.  Mono.

I have a medically fragile child, I keep reminding people.  Mono would be devastating to Corrigan. I need to know what I’m dealing with here.  How would I keep them separated? How can I prevent the spread to Corrigan? I feared his ability to fight anything off so soon after the last issue. I couldn’t rest.

So yesterday, I made an appointment with the Pediatrician and dragged a very reluctant teenager to his third doctor’s appointment in less than a week.  He even told the doctor, in front of me, that “Mom’s just being paranoid” and when the doctor chuckled with Connor, I felt so stupid.

The doctor refused to even do the bloodwork to find out for sure about the mono.  He kept assuring me that 99% of teens with mono are walking zombies.  He didn’t feel the spleen enlargement that the Urgent Care doctor noticed, and he was very thorough.  He said that Connor’s tonsils were not enlarged enough.  He wasn’t sleeping 15-17 hours a day like most with mono.  The doctor just simply didn’t see the need for the blood work and it felt so foreign to me, to hear those words.

What do you mean you aren’t going to investigate further?

Corrigan’s last hospital bill, if I were a betting woman, will probably shake out to be a number that I cannot fathom paying (thank God for insurance)…more than we likely make in two years.  He had three different teams following his case at Johns Hopkins. The Infectious Disease folks were in daily. There was not a test they did not do in order to track down what was making Corrigan so sick.  Aside from taking spinal fluid, they tested, sonogramed, EKG’ed, and tracked every fluid in his body.  They tested for crazy crap like West Nile.  They worried about bone infection, line infection and checked out every inflammatory disease he might have.  That boy’s entire system was studied and scrutinized for days, yet I couldn’t get a Pediatrician to take a single vial of blood from Connor.

It is mind boggling the differences in my two boys and I suppose I need to get a grip. Connor isn’t Corrigan.  Corrigan is not Connor.  A summer virus isn’t the same for one as it is the other. I need to wrap my brain around the fact that some things are easy.  Sometimes a sore throat is just a sore throat.  I knew, in the back of my brain, I was likely being a little irrational, but I wasn’t the one that brought up mono.  I was just the one that let the idea of mono make me a little crazy.

I am on the mend. Corrigan is fully mended and Connor is on his way to feeling better too.  Miracle of miracles, Mark has remained healthy throughout all of this, though I joke that because he always seems to get the worst of things, he would probably end up with some monster trifecta of the viruses that have plagued Cor, Connor and myself.

Can you believe that I am still working through stupid stuff like this five years later? That I still let Citrullinemia have such a hold on my brain? On my sanity?

Corrigan is not Connor…

photo (60)

and Connor is not Corrigan…
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One virus, two different outcomes…one crazy mother.

3 thoughts on “on getting a grip.

  1. I can Say i feel the same way as you do! My daughter Aimee is 8 with citrullinemia and my younger daughter Claire doesn’t have it, and i find myself worked into a panic when Claire gets sick as well, Specially when its something like vomiting that would send Aimee direct admission to the hospital…. I am so thankful to have found your blog, even though I don’t comment much, I am truly thankful to not feel alone in this Citrullinemia world we live in 🙂

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    • Kelly, I am glad you’re here too! I am happy to feel a little less stupid because of your comment, and emails from other UCD parents who think I wasn’t crazy! It is a hard line to walk, especially with our unaffected kids though, right? I want Connor to feel like his health is priority, but I don’t want him poked and studied for things that will run their course…but it’s the only way I know how to act since Corrigan was born!

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  2. I don’t have two kids to have the same experience, but I imagine if we decide to have anymore that I will be the EXACT same, Mindy! And how could the effects of citrullinemia NOT have an impact on your daily life, when you live it day in and day out? Deep breath in, deep breath out. Honestly, when either Ian or me get sick, I panic about what we have in order to determine how it will impact L. This bugs can wreak havoc in our little ones!

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