Like the Bachelor But Less Glamorous

Saturday, Charlie was cranky.

Sunday, he screamed and fussed for hours. After giving him practically every medicine we had available to use, he continued to scream. I called the neurosurgeon, discussed the situation, and he thought it would be a good idea if he came in and had his shunt checked. Have a kid with a shunt is like living your life on an abandoned mine field. You get comfortable, you might even forget that the issue exists, and the BAM! there it is–the possibility of brain surgery.

CT revealed a shunt that’s working better than ever (his ventricles keep getting smaller–I have no idea what this means),  and nothing obviously wrong with his ears or throat. We were advised to see our pediatrician if he continued to feel poorly.

This is the point where I start to get whiny about having a kid with special needs. I mean, if only the kid could talk. I’m stuck watching his every gesture trying to figure out if it’s a “clue” to his illness or an itch. We basically run an elimination game and wait to see who’s standing at the end. Will tonight’s winner be shunt failure? or will it be a viral infection of the mouth? Stay tuned to find out tonight on Illness.

Monday he seemed a *little better* and then suddenly in the afternoon, he crashed completely: shivering, feverish, crying, desperately tired, but unable to sleep. It was a bad evening.

We got in with the nurse practioner the next morning. Apparently, the whole city is sick and the place was booked solid. Never fear, mommy will get you in! We swabbed his nose and mouth, checked his ears, took a rectal temp, and cathaterized him for a urine sample. Seriously, if the kid had an opening, we checked it.

No strep. No flu. No ear infection. Actually, no clue what the problem is. He continues to run a high fever, but with no cause in sight.

I should have hopped on a plane tonight to head to Blissdom in Nashville. There are a ton of awesome people there, and I SO looked forward to seeing them again. And learning some new things. I could leave tomorrow afternoon, but I’m not sure if I’ll be able to do it if he’s still sick and we don’t know what the problem is. Love my Internet ladies, but my boy comes first.

Fingers crossed he’s feeling better tomorrow!

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  1. My heart goes out to him (and you); I’ve got my fingers crossed…

  2. Oh, poor little guy. You must have been so scared. I hope it’s just a virus & he feels better soon! It is always a guessing game as to what’s wrong, what hurts? and that is so frustrating. I even try Rachel Coleman’s “where does it hurt?” but don’t get a response, of course. Rats!

    • I try to ask him about his “owies” too and he just gets madder and madder. It’s hard when they can’t tell you what’s wrong.

  3. Oh boy, do I get it. We played that same ‘process of elimination’ game with Elisabeth a week or two back. She was so sick. We pretty much ran through the same list of possibilities as you, starting with the shunt, of course.

    And finally, almost a week later, they discovered that she had some bad organisms growing in her g-tube tract.


    Anywho…hope your little Charlie is on the mend soon!

    • I just hate waiting and they don’t want to give him antibiotics if they don’t know for sure it’s an infection–so we wait and wait and wait. Argh!

  4. Shrinking ventricles are a good thing because it means his shunt is draining the excess cerebrospinal flud which otherwise overfill the ventricles and push on his brain tissue. Compressing the brain causes neurons to die, which is obviously bad. Three cheers for brain health!

    Yup, glad my degree is good for something. I’m not just spewing Google. Though that’d be cheaper.

  5. Been there done that! It is SOOOOO frustrating when they cannot tell you what is going on. As moms, we just want to fix it! Hard to do when you don’t know what the “it” is!

  6. Feel better Charlie! (Give him a hug for me if he’s into it)

  7. Oh dear Katy, I am sorry to see you miss Blissdom. I am on my third day home from work with Hannah, who is on her third illness with fever in less than three weeks. I don’t love missing work but it is better than missing Blissdom! I’m glad we have no shunt to scare the daylights out of me, but the metabolic disorder adds a special something to a regular garden variety virus. Has she eaten enough to keep her going? Is she 20 calories shy of a metabolic crisis? Is that sleepiness or lethargy I see? Do we take a nap or a tip to the peidatric ER? I feel your pain. Here’s hoping the fever drops and you get on a plane.

    • I DO hate when the in and out has to be measured so carefully. Whenever Charlie is sick, just keeping up with fluids is frustrating–no clue how you handle it with calories.

  8. Aw, poor sweet Charlie. There is some incredible funk going around this year –not strep, not flu, but you feel like you have both of them. Cheyenne and Mia both had a fever that lasted a full week. Not cool. I know it must be hard when he can’t really say to you what hurts. I hope he starts feeling better very very soon. Poor guy.

  9. I hope your boy is feeling better and you get to have some girl time, too!

    Just thought I’d let you know I blogged about my wedding wear–I thought you might appreciate this new entry. :)

  10. Susan Kern says:

    Totally feel you on this post. We are having the exact same issue with Elizabeth. She’s been super fussy and not wanting to sit. I’ve also been trying to figure out what’s going on by process of elimination. So far, I’ve come with nothing.

    Hope Charlie feels better soon!

    • Susan: I hope thngs have resolved themsevles by now. Process of elimination is a terrible way to treat an illness.

  11. Awww, poor Charlie! Hang in there, Katy. He’ll be able to tell you soon what’s bothering him. Stephen turned 4 last month, and just started pointing recently. Yes, pointing. And FINALLY, he can sometimes tell us what is “owie” – that’s one of his only truly intelligible words!. Of course, as I was typing this, he started walking across the family room crying at me, but I know what’s bothering him based on his slight fever and snot nose.

    I hope Charlie feels better soon!!!

  12. Well, it’s two days later…. is he better and you’re not home?? (Hopefully)

  13. Mom in Maryland says:

    I’m so sorry to hear that Charlie’s not feeling well! And I know what you mean about the guessing game… our daughter has diabetes insipidus (a lack of the hormone that helps your body hold onto or let go of pee) and we’re going through teething right now which makes her not want her bottle or a sippy cup… so it’s a struggle getting fluids in her right now and every day I’m trying to figure out if she might just be sleepy or is she getting lethargic and dehydrated. I’ll be keeping Charlie in our prayers – hope he feels better soon!!

    • Thank you so much! Dehydration is always an issue when Charlie gets sick. Luckily, he’s old enough now to understand us, so we can usually get him to at least take a couple of sips.