update with an update and an update

UPDATE #1: The results of the spinal MRI are in.  There is something obstructing the flow of spinal fluid.  They showed me the MRI.  There is a narrowing of the spinal fluid in the neck area, and then a bulge of fluid just beneath that, indicating a backup.  Literally a bottleneck.  In his neck.  The fluid should be uniform all the way through, but it’s narrowing, and then as you look lower down, further down the spine, it bulges.  The neurosurgeon has not seen this yet because he is in surgery.  When he’s through with surgery, he’ll give his analysis.  And then we’ll determine what to do.  The fluid in the MRI does not indicate an infection (which still doesn’t address the white blood cell count being so high).

Is this something that was there at birth?  Is it only being seen now because of some kind of infection?   Is this related to some form of meningitis?  Is this related to the shunt?  Is this something that might have caused his hydrocephalus or is it a possible result somehow of it?  This is my list so far.  I’ll post more updates as we move through the night, mostly for my own sanity.  So there’s a record of all this, so I needn’t keep retelling the story or status. "We’re only giving him clear fluids now because he might need to be in surgery soon, depending on what the neurosurgeon says."  OH MY GOD.  I hate this.  Phil’s parents are with Abigail now, and he’s on his way here, to the hospital.  Thank you to all of you for your prayers and thoughts and love.

UPDATE #2: The neurosurgeon said he believes this obstruction is what caused the hydrocephalus in the first place.  He believes it has been there for a long time.  The obstruction is in the front of the spine, not the back.  It’s up high, in the neck, cervical area.  It’s very rare, he said, not impossible, but rare for this kind of obstruction or narrowing in this exact place (in front) to be congenital.  So, he thinks SOMETHING ELSE might have caused this obstruction.  Meaning… this "obstruction" might be a cyst that was caused by something else!  So now they need to scan his whole body for tumors, for cancer, for anything I guess that might cause a cyst or anything else that might be this obstruction.  It could also have been caused by an infectious disease. 

He does believe this, whatever caused the obstruction, has been chronic.  Since Lucas seems fine and all his limbs react fine, etc., there’s no immediate need to operate.    They might have to do another lumbar puncture to test for something else… for cancer cells or something like that.  They were so focused on infectious end of things that he didn’t think they sent his fluid for cytogenetic testing.  AND THIS IS FREAKING ME OUT.   

His meninges are inflamed from his tail bone up to his neck, but his vertebrae are all fine.  So could be some kind of chronic infection or something else.  Basically, I still don’t know what the fuck is going on.  I have no exhale answers.  Nothing I can say, ah, okay.  So here’s how we fix it.  Now I’ve got all sorts of frightening thoughts in my head.  I said to the doctor, "But I’m so confused.  I don’t even know what to google anymore."  He laughed, mainly because he doesn’t know either.

What it isn’t: chiari malformation, cryptococcal anything, or pms. That’s about all I know.  There are a lot of "most likely not"s and "highly improbable"s" being thrown around.     All the doctors are scratching their heads because it’s very rare that the fluid drawn from his spine would be different from the fluid drawn from his head.  But the shunt is not infected and is working fine.  So now the question is, and has been, what is causing his white blood cell count and protein to be so high in his spinal fluid (the fluid taken from the spine, not the head).  It’s most likely not viral meningitis because that rarely has high protein.  They doubt it’s bacterial meningitis because he’s acting fine, and nothing has grown on his culture yet.  So what the hell is it? 

Yesterday we had a family outing.  Woo hoo!  We all went to get tested for TB!  Fun.  Lucas stayed in the hospital as the nanny, Phil, Abigail, and I went across the street for our pricks.  Results won’t happen for another day.  But so far so good. 

Lucas is now having a spinal MRI to rule out anything anatomical that might be causing the yellow spinal fluid.  Maybe there’s an obstruction of some kind.  And of course when I hear "obstruction" I think "tumor."  Cause I scare the crap out of myself.  No one has answers.  We might have some later, after his spinal MRI.  I have ‘rhea again.  Abigail has a rash on her tush that won’t go away.  It’s about the size of a dime.  And she’s now projectile vomiting every once in a while. Oh joy to the world. 

Updates to this post appear above

COMMENTS:

  1. oh, you guys! It just seems like one thing after another! I hope the day is near that everyone will be home, safe and this will all be a thing of the past. Your all in our prayers, stay strong Stephanie, your will is amazing your strength will help little Lucas as well.

  2. Stephanie – I am thinking of you and sending my love to you and your family.

    Just remember, Lucas is strong, he's a fighter. He is your son, afterall…

  3. Sending you hugs, positive thoughts, strength, and a reminder to breathe.

    There's no reason, none of it makes sense, it's only something you'll survive. As will Abigail and Lucas.

  4. It looks like your sense of humor remains intact. Thanks for the "update"; sending positive thoughts your way.

  5. Hey you,
    This is all very shitty but you will get through it and there will be other horrors to face. Hug BOTH those babies and take some immodium. I do mean this is the most sympathetic way and not as an asshole.

  6. I'm another long-time reader/first time poster, who felt the need to add my prayers for a speedy and healthy outcome. Your writing over the past few days as you describe your ordeal has caused tears to come to my eyes. As the mother of a son and daughter, I know well the ache in your heart when something is hurting your precious child. I hope you get answers/peace soon.

  7. Hey you,
    This is all very shitty but you will get through it and there will be other horrors to face. Hug BOTH those babies and take some immodium. I do mean this is the most sympathetic way and not as an asshole.

  8. The hardest part is the waiting. I hope you get your answers soon and life returns to some sense of calm for your family.

  9. Oh Stefanie…

    Just reading your past couple of posts makes me want to cry with you. I hope having your family with you will be a comfort.

  10. Hey Steph, I've been reading your blog for a while and I've never posted…too shy…but felt compelled to do so today to let you know I've been thinking of you, little Lucas, and your family while you undergo this very scary, frustrating, horrible, ordeal. Where is Doctor House when you need him? Sending you big ((((hugs)))) from Vancouver, Canada.

  11. ((hugs)) I can't say anything except our thoughts and prayers are with you and your family everyday. ((hugs))

    I know you said you've got family coming in soon and the one thing that really helps us when we've got a family member in the hospital is to keep a hospital notebook. Whoever is staying with the patient writes down everything that the nurses and doctors say (bp, temp, test results, possible diagnosis along with the date and time, etc) That way when the next member of the family shift arrives to take over, they can be immediately caught up on what's transpired by reading the notebook.

  12. Glad to hear that at least a few things were ruled out. That's good news. I always tend to read too much, think too much, jump to the worst conclusions, and it does me no good, but I can't help it, so to tell you not to do those things would just be hypocritical. I just hope all the things the drs are testing for keep coming back w/ good results. Re Abigail, babies do get rashes on their tushies, so maybe it's just an old fashioned diaper rash, and maybe she just has a stomach virus. I'm sure you'll have her checked out, but TRY not to think the worst, as hard as that may be. Continuously thinking about you and your family and wishing you only good things from now on.

  13. I am so glad that you called your families for support. Maybe Lucas could come for a visit. I had a cat named Zach who got me through so many things, so I know what a joy and comfort he would be. I am a RN-not pedi-but I can offer this advice: Ask for everything in real terms, and have someone with you to write everything down. Keep a notebook to write down all those questions that come after the docs leave and even those 3 am questions. Keep venting for your own sanity. Accept help. Take Care.

  14. he's going to be the nerdy president of his high school science club, just like his mommy. i still believe that. i know many of the things you're going through. we went through similar things with our daughter. i still believe 100 percent that lucas will be just fine. hang in there.

  15. i asked my husband, "why doesn't god love my baby?" when all the stuff was going down with our daughter. he said, "he does. that's why he gave her us for parents." it's about the most profound thing he ever said. it helped me a lot, and i thought maybe it could apply to lucas as well.

  16. (one more attempt to try to post, and hope that it doesn't post multiple times.) Anyway, as long-time reader and mom I just wanted to add to the support, prayers and well wishes that are coming to your family from so many. Preemies are tough; they are fighters. I wish Lucas didn't have this opportunity to demonstrate this to you, but he does; and he will! My thoughts and prayers are with you.

  17. Just a thought, sometimes a diaper rash that won't go away has become a yeast infection. You treat it with over the counter Monostat. Hope that helps. I'd like to see you get any break.

  18. Okay, hang in there. It helps if you can find a mantra or a prayer that you can keep repeating. It will occupy you and give you some peace. In the words of the immortal Bob Marley, "every little thing is gonna be alright."

  19. They're ruling out the scary stuff. That's a good sign! It sounds like they're being diligent and you're being vocal. This is a winning combination for Lucas. I hope his happy gurgles are bringing you some peace during this anxious time.

  20. I'm so sorry that you still have so many unanswered questions- that would have me thinking of all the worst and I'd definitely have the runs too. I'm thinking about you and hoping for the best.

  21. thinking of you all and eating cake with a spoon in your honor.

    boudreaux's butt paste got rid of a bad yeast rash on my baby's butt in less than a day.

    you're a good mama…stay strong.

  22. Well, at least they've ruled out some bad things – that's a baby step in the right direction. Thank you for the update – I've been worrying…and I don't even know you personally. C&S (courage and strength)

  23. Having been unknowingly exposed to TB myself, let me tell you that you if you were exposed you will have a postive reaction to the pric very quickly….like within 12 hours and it hurts like hell so there is no ignoring it. Even if you get a reaction, it also doesn't mean you have TB so don't freak out.

    Best of luck to your family.

  24. Thanks for the continued updates- prayers and continued thoughts for some positive, good news to read on your blog very shortly–

  25. If Abigail has been projectile vomiting then maybe Lucas had a virus that caused his vomiting. If he has recently had a virus then could that cause these WBCs? I hope it is something like that anyway. Wishing you and your family all the best.

  26. I've got 'rhea just reading about this. So sorry you have to go through it all. But you will get through to the other side. Give the babies kisses for me. I'm rooting for you.

  27. This should be happening on an episode of House or something, not in real life!! Praying that the lab is speedy, Abigail's rash goes away, and that answers are coming.

  28. Oh jesus. Seriosuly best wishes to you and your family. Think positive strong thoughts and know there is a world out there doing the same.

  29. I cannot imagine how you must feel, so just know that Lucas and the rest of your family are in my prayers.

  30. Same thing my neice went thru (I mentioned her a several posts back) Finally, they came up with what it 'probably' was, because they ruled out all the really scary things they were 'certain' it wasn't…and took a course of action accordingly. She will have to see a neurologist monthly for 6 months to 2 years to check her status, but basically, is now on medications that have her feeling fine, completely normal. I feel sure you'll have a similar-positive, outcome with Lucas.

    So, are they keeping him in the hospital until they have a definite diagnosis, or until he can keep a certain amount of food down, what? I don't mean to be intrusive, just saying prayers and between me and God, I get kinda specific :)

  31. I've been checking and reading your updates of your little one, I know I'm sorry, and your in my prayers does little to comfort you. I don't know what it's like to have a daughter as I never had one, but I do know what it is to love that little man with more love than you ever thought yourself capible of. And it is a good thing you are allowing your families to be called in, even if for moral support. Trust them, lean on them, and when you need to cry and yell at them. They love you, your beans, and want to help in any way they can. Do whatever you need to do to stay strong for your little one, and if that means you eat half of a cake, eat it, take care of yourself so that you can take care of your little guy. And if you get the notion to pick him up and hold him and sing a silly song off key, to hell with anyone within ear shot, sing that song, tell him that story, comfort him with only the love that his mommy can. And let your mommy and daddy comfort you in ways only they can.

    My baby son is in the Army and I just found out he's been in the hospital for 4 days with severe dehydration, and durning his deleriam, he told the docs and nurses to call his Moma, he needed his Moma. And it broke my heart becasue I can't be there to hold him,sing silly songs off key or tell him goofy stories but I can love him in a way only I can. Sometimes that's all we can do for our little (and in my case not so little) men is love them like their Mommies.

  32. Waiting for answers has got to be absolutely maddening. I would be climbing the walls.

    I'm still praying for you all. And poor Abigail's sweet little angel tush.

  33. about the projectile vomiting and diarrhea… i know when babies teeth, their mouths produce an abundance of saliva, sometimes causing diarrhea and possibly vomiting. the projectile part, i'm not sure if i've ever heard of that, but i am wondering if those particular symptoms could be attributed to cutting teeth???

    keeping you all in my prayers…

  34. Stephanie,

    Thanks for updating us. I will be checking in all night and am thinking about you guys with tears in my eyes. My 2 little girls made a card for Lucas today and as my 2.5 yr old said"i know he will get better, he's a boy and they are tough".

    FROM STEPHANIE: That's just about the sweetest thing I've heard all day. One day I'm going to print out all these comments and make a big ass scrapbook of love for the little guy.

  35. just hold on, stephanie. hold on. yall will get through this. your sweet little lucas is going to be ok.

  36. Well now we are getting somewhere…somewhat slowly for all of our tastes but it's progress. One realizatin will lead to the next to the next and then please god the answer and solution. Sending you a heap of virtual support for a speedy recovery for all of you! -Amy

  37. I think it a wise move to put all of the updates on the internet. Maybe someone will come across your blog and be able to put all the pieces together – you never know who might recognize all of the symptoms.

    ~Praying for wisdom for the doctors~
    Farah

  38. Thank you so much for these updates- I have been back hourly to see if there's any news! Sending you love, hugs and only good thoughts. You are in my prayers. I just KNOW everything is going to be alright.

    xoxo.

  39. I know it will all turn out great and Lucas will be fine. I am so sorry for what you are going through. My thoughts and prayers are with you. Be strong, I know you are and we are all cheering for you and your family. Be well

  40. So many people care, Stephanie. I wish I knew the best thing to say that could help the most.

  41. Oh my God … prayers for you and your family. This must be excruciating for you. I don't know what to say.

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