a name is nothing

In ALL, ILLNESS, SNIPS & SNAILS by Stephanie Klein49 Comments

allbetter.jpgAbigail making nice with Lucas after his surgery.

A name is nothing

He awoke this morning smiling.  Wasn't hungry, only ate 4 oz., then wanted to nap.  He slept for two and half hours then began to vomit.  He wasn't crying, didn't seem like he was in any pain, just seemed sleepy.  "Did he have a rough night?"  No.  "Yeah, 'cause he's acting really tired, which isn't like him," our nanny said.  And he was doing this weird thing with his eyes, where they'd kind of bug out, as if he was suddenly startled.  We called his pediatrician, who was out to lunch.  I got dressed and drove him to the doctor anyway, without an appointment.  Part of me thought, "he's just tired, poor thing."  But I also knew it was more than that.  Babies puke.  So I didn't think much of that.  But his eyes… he began to stare off into space, and then that startled look… startled me.  No fever.  No seizures or anything, but those eyes.  And then he vomited again in the waiting room.  Something just isn't right.

Here's the bitch of it all.  Yesterday, before all this happened, I took him to the pediatrician because he had a rash around his mouth.  So did Abigail.  "You're not going to freak out each and every time this shit happens are you?" Phil asked.  "'Cause I'm sure this 'rash' is nothing."  And he happened to have been 100% right. 

"So I'm being overly-cautious.  So what?  I'd rather go and let them tell me it's nothing."  And that's what I did.  I took the beans to beantown… okay, not to Boston but to their doc.  And they laughed and giggled the whole time, especially Lucas.  All happy.  "Nope, they're not allergic to bananas.  And that rash is just from all their drooling.  They're teething.  It's normal.  You can put on some vasaline, but it'll be fine.  And on his neck is some very mild eczema."  Done and done.  "They're both totally fine," their doctor said. 

And then I bring him back today, and our regular doc isn't there, but another one is and agrees to see him.  She sees that he's kind of looking as if someone hit a restart button somewhere inside him.  He's acting as if he's just landed on the planet earth and has no idea what's around him.  And it's fucking terrifying.  So she suggests, "you know, just to be safe, why don't you go bring him to the ER." 

"Phil, ask the nanny if she can stay late to watch Abigail, and come meet me at the ER, okay."  It wasn't a question.  And that's when I kind of have to remind my self to breathe.  I'm so nervous I begin to sweat. 

Then we wait in the ER, you know, forever.  And finally see a doctor.  Lucas is asleep in my arms.  Then his eyes jolt open and he vomits.  "You see, just like that," I tell the doctor. 

"Yeah, I need to get bloods and a CT, stat."  And within ten minutes of his CAT SCAN, a neurosurgeon greets us.  "I need to relieve the pressure in his brain."  The words are kind of hanging there.  Did he just say, brain?  "The normal pressure in there for a child his age is less than ten.  He's at 28, which is three times what it should be."  Does this mean he's going to be retarded?  It's all I can think, right after, is he going to die? 

"Do you know if it's contageous?  Should we be worried about our daughter?  Is this something she could have caught?"

"I can't answer that right now.  I'll have to see what the fluid looks like."  He tries to relieve the pressure then and there, asking if we'd like to leave the room.  We're not going anywhere.  We're handed paper masks, told to fold them over our noses, and pull the bottoms down under our chins.  Iodine.  A tray of needles.  I grab Phil's hand.  I'd thought we'd been through the worst of it in the NICU.  I thought this shit was behind us.  I said a prayer, then aloud said my grandmother's name, Beatrice, after whom he was named.  The Beckett in him is her.  Please pray with me, I say.  And I don't pray, not really.  I guess sometimes.  In times like these, you just try to think good things.  But you're not thinking, "Can't wait until his first roller coaster ride" thoughts.  Good thoughts become, "he's going to be fine."  But you don't believe it.  You thought he was just overtired!  Well, until you thought it was more. 

And then you blame yourself, picking it apart, wondering if you could have spotted something sooner.  How could the pediatrician not have seen anything yesterday?  But he had no symptoms yesterday.  But, he did throw up a lot.  But even when I'd mentioned that, the doc said it was normal, that they outgrow it by the time they're 9 months.  And now, I'm in a hospital bed, beside my sleeping husband, listening to Lucas's breath across the room in his hospital crib.  He's hooked up to monitors, just as he'd been in the NICU.  I know the sounds.  Am used to the vital stat checks every four hours.  But I don't think you ever get used to this. 

He's been diagnosed with aquired Hydrocephalus. He was not born with this (we don't think… we're going to have them look at his CT from when he was in the NICU, but likely they would have spotted any abnormalities then), and they don't know what has caused it   He hasn't been dropped or hit his head, and no tumors or anything showed up in the cat scan.  The fluid inside was tested, and there is no bacteria in there. His white blood count and electrolytes are fine, not anemic.  Has been completely healthy, not even a cold.  Has been giggling and happy, inquisitive lately, just beginning to roll to his side.  He hadn't shown any symptoms until today.  We'll of course know more in time.  Right now, we're just taking things hour by hour.  I hope I'll get some sleep tonight.  And I'll continue to hope for a lot of things, simple things, things we understandably take for granted.  Please hope with me.  He's my sweet baby, and he won't look at me.  I just want to know that he'll be a normal kid.  And as far as I've heard, they have no way of knowing these kinds of things.  Will my life ever just settle down and be quiet, at least a little drama free for a while?

I'm so thankful for my family.  For my Lucas Beckett, and Abigail Ruby, and man, right now, so thankful for Phil.  "I'm going to be with you forever," he said to me after we got the news. Because I live after school specials up here in my brain.  We're going to get divorced over this, I think in a panic.  We're going to mourn the loss of a baby, and then have to deal with a daughter who senses loss.  And we'll fight and things will never be the same.  These are the sick thoughts that comb through my brain.  "We're family," he says.  And I believe him.

Comments

  1. I'm hoping, and saying a little prayer for you and your family this evening.

  2. I'm so sorry Stephanie & Phil. We are sending you all lots of good & healing thoughts/prayers. It has too be so scary — Sounds like they are doing everything — continue being Lucas Beckett's advocate!! Your family has amazing spirits. Tomorrow is a new day.

  3. i'm glad you have the support system of your family and i don't pray much anymore, but i will include you and your family in my good and hopeful thoughts.

  4. Stephanie and Phil, you have my prayers (and I don't usually pray either). I want to say the usual "Stay strong" and "Be positive", but I won't because I know you both have a handle on things and know this already.

  5. So sorry to hear this news — just when you have a chance to catch your breath…Your readers will be thinking of you. Best wishes to you and your family.

  6. Stephanie – I am a prayer. And I have been through more crap in my life than I ever want to talk about. But my family and I have ALWAYS turned out on top. I am praying for you now. I am praying that your new family will always be like my own – on top, always okay, always at the silver lining. I am praying for you and your "beans", and I just know that they will, WILL both be wonderful, normal and HEALTHY.

  7. Oh Stephanie,
    I'm shocked by this news!
    God bless you and your family, especially Lucas. Everything will go to better. Believe in it.
    Un abbraccio, di cuore

  8. Dear Step, excuse me for my bad English, I read you latest post this morning from my working desk in Italy, and I’m so sorry. I hope with you for the best for you little baby. Momi

  9. this is the first time i'm posting even though i've been reading for a very long time. i am so sorry to hear about Lucas I just sat here crying reading this, praying that hes ok. I know this must be so scary right now. I cant imagine what your going through but just be you, your strong self. My prayers and hopes will be with you and your family.

  10. I don't pray either but I'm sending you what my dad calls 'white light'.

    Do yourself a favour and don't read up too much about this on the internet; too much information sometimes is not always a good thing, especially for a worrier. Just listen to your doctors and hang onto Phil.

  11. Stephanie,

    So sorry to read this. You have a fantastic husband & family, they will support you through this.

  12. Oh, I am so sorry. It sounds like you and Phil did everything right. Poor sweet Lucas. Your family are in my thoughts. Take care of yourself–your family needs you.

  13. God is good. Please remember that he is always with you and Lucas and that he has a plan. I will keep you in my prayers. God Bless.

  14. Dear Stephanie and family,
    I am so sorry to hear about your little Lucas, please try and stay strong and positive. I knew a boy at school who suffered from the same condition and he was perfectly normal, both phisically and mentally. best wishes to you all.

  15. oh stephanie! i'm so sorry to have woken up to read this post. give yourself some major credit for noticing the signs and being insistent on taking him in to get checked out. i'm glad you had phil there with you especially to utter his reassurance of being there forever.

    i work in an icu but with the adult population so i'm no stranger to having patients that require that same relief of intercranial pressure. the cause is a little bit different and they sometimes need more interventions to provide that relief but the idea is the same. it can be anywhere from touch-and-go to instant relief to somewhere in between. i know that doesn't help but i'm just trying to say that the not knowing and the waiting to see how he responds to the pressure relief is par for course. little lucas is so strong! just keep in mind all he's overcome thus far!

    i'll be praying with you and will be checking back for updates!

  16. you are great parents with lots of strength and love. don't forget it. all of our biggest wishes for a speedy recovery for your little man.

  17. My thoughts and prayers are with you and your family. Being of mom of three children with significant disabilities, I know the stress of hospitals, doctors, and not enough answers. Lucas has already shown he is a fighter, and I'm sure he will rise to the occasion yet again.

    And, at the risk of offending you and some of your readers, not being completely "normal" is NOT the end of the world. It's just a different world but one just as precious and good.

  18. Me too – I am sending positive thoughts your way, all the way from Boston. Tears in my eyes, and I don't even know you, but reading your posts make me feel like i do. Hang in there, and pleased keep us posted when you can.

  19. I remember reading before you gave birth that you were worried about your mom instincts. But they kicked in perfectly — you can tell so much from the baby's eyes, you instinctively knew that and made the right call at the right time. I hope you get just a little bit of comfort from knowing that.

    Sending good thoughts.

  20. This is terrible. Yes, I know I have a talent for the obvious. Thank you.

    I will be praying for only the best for Lucas.

  21. My son was born with hydrocephalus almost 29 years ago.
    Your baby's skull has not fused yet so I am sure there will be no permanent damage.

  22. Oh geez. I'm so sorry you're going through this. Throw my hopes and prayers in the pool, too. I hope things turn out fine, and you continue to find strength in each other.

  23. Healing thoughts are coming from Pennsylvania with the hope that Lucas soon is better and the rest of you are able to relax a bit.

  24. dear stephanie, i hope things turn out to be alright. I am so sorry this happened. I pray that things will get better. Thank god you went to the ER!

  25. Stephanie –
    I am hoping along with you. Seems to me like you couldn't have picked a better husband and father for your beans, lean on him now. Together – the two of you can get through anything (how's that for afterschool special). I will keep you and your family in my prayers. Godspeed little Lucas.

  26. "Will my life ever just settle down and be quiet, at least a little drama free for a while?"
    Sorry, but as a mom I have to tell you: no, never. Because if you have kids, there will always be something to worry about.
    I`m not a prayer, but my thoughts are with you. All the best.

  27. Stephanie & Phil,
    I am so sorry for little Lucas. He's getting the care that will make him better. Stay strong. Positive thoughts are with you.

  28. lucas will be more than fine. my cousin was born with hydrocephalus, and he is 28 living an awesome, healthy life. good thoughts and prayers go out to you and yours!

  29. Oh SHIT man! Shit shit shit shit.
    But another poster here is right. Too much information can be a bad thing. Listen to your doctors and lean on your Phil. Your precious bean is going to be so, so, so fine.

  30. I feel so silly sending you hope over the internet. It just seems so pointless. But I am a pray-er. I've prayed before in difficult times and it's worked. On my lunch hour, I will walk to the little chapel near my office and ask for Lucas to be o.k.

    He's lucky to have you and Phil and Abigail in his corner.

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