Crazy Going Slowly Am I

Remember that song we sang as kids that went

“I am slowing going crazy.
1…2…3…4…5…6.. switch.
Crazy going slowing am I.
6…5…4…3…2…1…switch”

Yeah, that kind of describes my life right now.

Last night Vista finally did what I’ve been afraid she was going to do for a while, and aspirated on her meds.  That means her meds went into her lungs rather than into her stomach.  That is a bad thing.  A very, very, very bad thing.

And let me tell you… nothing induces panic faster than watching your kid turn completely blue.  She wasn’t able to make any sounds,breathe, or cough, which meant her airway was completely blocked.

I still get shaky just thinking about it.

I was able to get her breathing again with several abdominal thrusts, then bundled her up and took her into the hospital for a quick check.

(Let me insert a PSA here encouraging you to make sure you’re up-to-date on your First Aid and CPR procedures.  It can, and does, save lives)

Luckily she didn’t seem to sustain any injuries from the incident, so now we’re just watching for signs of a bronchial infection.  Wheee!

The biggest implication of this whole incident, though,  was that it means giving her liquid meds is no longer an option.

The risk of her aspirating again, overrides the need for the anti-seizure meds.  Which is saying a lot.

So I spent the day on the phone with Vista’s neurology team trying to figure out what to do next.

We went in and met with the therapist who is working with us to teach V to take her meds.  She said that Vista is ‘beyond her expertise’, and so we’re pulling child psychologists onto the team now.  The word ‘Asperger’s’ was tossed out and the need for an assessment to see if that’s what we’re dealing with and the reason we’re having so many challenges was raised. So that’s a third person who has suggested V might be Asperger’s.  We have a date set in November, now, for her to be screened for the Autism spectrum.  I guess we’ll see what they come back with then.

But that still left us with the issue of what to do in the mean time.

We went over every possible option with the team, including taking her off meds completely.

By the 5pm it had come down to 2 real possibilities.

Putting an NG tube in or switching her meds.

Neither option makes me feel warm and fuzzy.

For now, I think we’ve decided to attempt to switch her meds.  We’re going to try a med that has a pill I can crush and make into chocolates, like I do her other pills.

The med they’re considering right now is phenobarbital.  Barbiturates FTW!  I’m pretty sure my 3yr old will be a full blown druggie by the age of five.

I’ll find out tomorrow morning what the official decision from her neurologist and we’ll make the switch.

… Crazy going slowly am I.  6…5…4…3…2…1…SWITCH.

 Crazy Going Slowly Am I
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16 Responses to Crazy Going Slowly Am I

  • Deidra23 says:

    Oh Jenn.. i’m so sorry.. this med thing is just a big sucky roller coaster. Ugh.

  • So glad Vista is doing okay. How scary!

    Many, many thoughts that it all goes smoothly with the Autism spectrum screening and with the new meds.

  • I still get shaky for you thinking about last night. It freaking sucks you have to face this battle everyday. I think I agree with Aspergers being a potential issue. While it sucks to deal with an ASD diagnosis on top of of her other problems, it will give you a place to find more ways to deal. I hope the meds issue is resolved soon. Love you hun and sending good vibes and prayers your way. And booze.

    Jenn Reply:

    @Jenni Williams,

    Yeah, that’s sort of the thought behind it. If we know what we’re dealing with, then we might be able to figure out the strategies we need to help her deal with things. It’ll be interesting to see what comes of it. The lady doing the assessment has already told me she doesn’t think V has Autism, so we’ll see.

  • Cor says:

    How I read this post:

    [haze of the usual life]
    I saved my daughters life
    [now, let’s try and get back to the usual haze]

    You write it as though it’s nothing out of the ordinary, but it is.

    Jenn Reply:

    Thanks Cory. I guess I hadn’t looked at it that way. It was just another one of those things that came up that we needed to deal with, so we dealt with it.

  • Leigh-Anne says:

    I love you too.
    And Vista. And Bil.
    But mostly – you. You have been my rock so many times in the past, and I find it disheartening that I can’t be yours now. I have no answers. I have no miracles. I wish that I did… where *DID* we put that magic wand???

    Please know that not a day goes by where I don’t think of you, and that darling beautiful creature you created. Your family is my family.

    Please call – even just to cry. I am here.

    HUGS

    Jenn Reply:

    @Leigh-Anne,

    Thanks sweets. Oh if we found that magic wand, the wonders we could do with it. :)

  • Lu says:

    Shit Jenn, I have been thinking about you guys all day. I am so glad that you were prepared and knew what to do. People laughed at me when I ordered a prop and CPR video when I was pregnant.
    I am so sorry for all you had to go through, I can only imagine
    Isn’t it just like Vista to be out of someone’s expertise? Queen V, right there.
    It sounds like you have a good team of specialist working with you to figure this out. I am hopeful that this will bring a good solution. I want things to be better so badly.
    Sending huge hugs and a liter of vodka. xo

    Jenn Reply:

    @Lu,

    Queen V indeed. lol.
    They refer to her, at the hospital, as ‘The Little Anomaly’, because she refuses to fit into any mold or follow any rules.
    We’re very lucky, though, to have a super great team working with us. I’m thankful she has the doctors and specialists that she does.

  • Sending all three of you hugs. Everything is confusing and blury right now, but you will make the right decisions. Just trust in yourself, and continue to advocate for V with her medical team.

    Hugs!!

  • Lisa says:

    Thinking about what you and V went through the other night makes me shaky, I can only imagine how it makes you feel. I’m glad she is okay thanks to some quick action by you. PSA heard loud and clear.

    As for the rest. You are such an amazing advocate for V, amazing. She’ll get what she needs as long as you’ve got her back. If she does get an ASD diagnosis at least that means you’ll have access to more, know more about what is going and how to help her. In the meantime I hope the med switch works.

    Love and hugs mama (and Miss V)

  • punkinmama says:

    I can’t imagine going through all you have to deal with every day. I wish there was something I could do to help. You and V and Bill will continually be in my thoughts!

  • laura says:

    Oh J, I am so sorry you all have to keep going through all this! I am so glad that you knew what to do, that only makes you a even more awesome mother! So sorry you all had to even go through that episode.
    Many hugs and best wishes. Sending good jujus to the Drs and Miss V.

  • Maria says:

    Ugh. I’m glad you’re able to try a new medication before having to do an ng tube.

    At her age, it’s almost impossible to dx Aspergers because there are just so many other disorders and emotional problems that present really similarly. And kids just aren’t cognitively at the level that most psychiatrists feel comfortable making the call about.

    I hope you guys get some answers but don’t stress out if they can’t tell you anything definitive right now. As long as she’s getting the right services it won’t matter to know what’s “causing” her symptoms. (Unless she’s presenting Tourette’s type stuff in which case the therapies/approach really differ between that an ASD.)

    Good luck mama.

  • so grateful that i got to hear your voice on the phone after all of this. i’m here and thinking of you so much. there is a lot to consider with all of this and you are the best advocate for sweet v. wishing you and bil peace in whatever decision you choose.

    xo!

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