Mind if I vent?

[dannlark]

So, if you've been following Ian's story we've been have a difficult time with CHLA getting his CT done. Like...endless...waiting....to...schedule...:violi n

So, we had the appnt. with his pediatrician and she said she was surprised that it hadn't happened yet and said she would hurry them along. Well...

I heard nothing from her yesterday so today I called at 11am and left a message with her reminding her about it AND requesting that instead of a regular CT it be a 3-D one. She called me back and said she spoke with radiology and they would be calling, but that she had to trust the NS (the one we don't like) about the non 3-D CT as the regular one, she claimed, shows all they need to know. Anywho....

So radiology calls and guess what? We are so BLESSED to get the next available appnt. on...drum roll please.... JULY 1st!!!!!!!!!!!!! Aren't we just the luckiest folks in the land???? :no Wow, I get to wait a month to just MAKE an appnt. and then get to wait another month to actually GET an appnt.!!! Anywho...

So, being the squeaky wheel that I have become... I call the 2nd opinion/consultation NS's office that we have Ian scheduled to me with on the 17th and ask if there is any way that the Dr. could order a CT for Ian before we meet with him. But unfortunately since he's not yet an official patient they couldn't help with that. BUT, they did have an earlier appnt. now available!!!! on the 10th!!! NEXT TUES.!!!! And he could then schedule a CT there at Cedars-Sinai if he felt it was needed and it would probably happen BEFORE the STINKIN 1st of July!!!! Wow...

If that isn't an advertisement for being the squeaky wheel, then I don't know what is????? I just had to share the frustration and jubilation that I went through all in about 4 hours!! :Irule:

I'm exhausted...

*Larkin

[mckennasmum]

so that's good and bad news then at the same time!!! I can't believe it takes that long to get a CT scan done, what a load of crap!!!!!!!!!!! Are they that booked out or is it just red tape. It is so mentally exhausting though, but good for you for sticking to it. So maybe by July 1st you'll know a lot more! As I think I said before, we had to have the ct scan done before the NS would look at McKenna!

Hang in there

[Tawnia]

Hope all this is worth it! What a day of highs and lows!

[marisajo]

Awesome that you can get in next week! Sometimes they can tell just by examining the child, so even witout the CT scan, I think you'll have at least a decent idea on Tuesday of whether you'll be heading down this road. Will keep my fingers crossed for you that the day goes smoothly and you get all you questions answered finally!

[Alison]

thats great you have found someone else who can get thing happening sooner, and im glad you now dont have to wait as long!

[mattricia]

Oh Larkin, i know the waiting can make you truly think you're going mad, especially when it doesn't have to be that way!!! We waited THREE months to see our neurologist and he scheduled us THE NEXT DAY for our CT scan. Unbelievable, right? The nurse at our ped made the appt. and i figured with a wait like that, there couldn't be anything serious to worry about. Ha.

It took me a long time to get over my bitterness about that three month wait. I just wish i'd had even an inkling that i needed to advocate for Jack before. We never even heard the word "craniosynostosis" until that appt!

Enough about that...i'm sooo happy for you that things are finally moving for you. The ball is rolling now...just a few more days!

[beccad]

Way to go girl! I hope you find out soon. The waiting truly is the worst part.

[Monica]

Our NS highly recommended the surgery without the scan, but once he saw it, he said we pretty much HAD to do it. It only took us about 10 days to get in, though that was long enough. The NS made our appt with the PS - he even said it would take months to get in if we did it ourselves. Hang in there!!!

[three.little.boys]

Keep fighting Larkin!!! Go Girl GO!!!

Two things....thell the stinkin' pedi that....yes..the NS says regular CT scan...but OVER 20+ of us (who happened to HAVE the surgery on our own kids) say ONLY 3D CAT! We have all been down this road before...just trying to save you (and darn pedi!) some legwork up front!

Also, not that it matters, but the first CFS we saw here in KC (crazy man...remember me telling you 'bout him?) ordered a 3D CT Scan BEFORE we had our appointment or even met him! We were SO lucky to get the CT Scan the SAME day as the appt!! Whew...only now do I realize how we lucked out!!!

Any news from Fearon yet??

[Wyatt's Mom]

Good job Larkin. Keep fighting for your child. You are doing great. Keep us posted!

[Pocket]

Good for you to keep on pushing!! What a lucky little boy Ian is to have YOU fighting his corner.

[Janet]

Way to go Momma...if we don't fight for our kids nobody will!! Good for you larkin!!

[momoftwo]

You rule Larkin!! GREAT job!!
I was going to suggest that you call around for a second and even third opinion and see what kind of CT they would order and then report that back to the pedi before the CT takes place..but..hopefully this second opinion you have scheduled will take care of it!
One side note..I was told when we went to the NS the first time that they could not order the CT the same day because my insurance required preauthorization- the scan we had ended up costing a little over $4000. So, if you don't already know, call your insurance and find out what the policy is on scans and who you can call to expedite things. (My insurance people know Logan's name..I talk with them on a weekly basis it seems.) Anyway, I know it sucks to not only have to follow up with the docs and push for earlier appts, but keep up with the insurance stuff too..that too can prolong appts and tests as well. When we went for our second NS opinion, my insurance gave me a number that I could call -while I was at the docs office if necessary - to get authorization for more tests.
I am so happy you will hopefully get some answers on Tuesday! I will be thinking about Ian and praying for you guys to get answers..we will be at the CFS that day too!
Good Luck!!
Amy

[dannlark]

Thanks everyone. Yesterday was CRAZY!! (shakes head) But, ya' gotta do what ya' gotta do, right? Fight the good fight and all...

Sadie, haven't heard back from Dr. Fearon this second e:mail round, but hopefull I will soon. I'm planning on calling them on Monday to remind him about it. I've got a list of questions an arms length long to ask this new NS (with Dr. Fearon placing the bar very high). Can I tell you, I got such a different vibe from this new NS's office than the CHLA Dr.? For the first thing, they were SO helpful in the office, really going above and beyond to answer things for me and getting me this earlier appnt.. AND, the women that does his schedule actually told me that the 1st meetings are usually at least 45 mins long (and they schedule for that!!). The NS we saw at CHLA was in and out of the examining room in about 12 mins!! So, I'm super excited for Tuesday!! As for the 3-D CT, I've pretty much given up any kind of meaningful comunication between my son's pediatrician and myself re. the CT. She has a GOD complex with this NS and I feel like I'm banging my head on the wall every time I tell her that we want the 3-D one. "I have to trust his judgement on the CT...." BLOW IT OUT YOUR EAR!!! :evillaugh So, my plan is to see the new NS on Tuesday and have him request a 3-D one and get it done before the July 1st deadline. Then cancle the useless one... I'll be sure to reference you all about it when I speak with him. BELIEVE ME!!!

Amy, I'm going to call our insurance company right now and start asking questions. GREAT idea!!!! :ideaThat's what was taking so long for the CT to begin with and the icky NS's office really wasn't in any hurry to get the ball rolling... I just want all the ducks in a row before the ball really gets rolling. I can't believe you will be at the CFS that day too!! I'll be sending you mega information vibes all day!!!

Thanks again everyone.

[dannlark]

I just spoke to our insurance and what a waste of time that was... They could only say that maybe if the Dr. know's some proceedures will be needed in the future that they get pre-approval for all of them up front. This way, when they need to happen, we don't have to wait. I'll ask at the Dr.'s office if that would be helpful. Otherwise, it's a slowed down process. Oh well... I'm just greatful that we have good coverage in the first place. Thank you God!!

*Larkin

[mckennasmum]

tuesday's just around the corner, try and relax on the weekend. Can't wait to hear what happens

[beccad]

I'm praying for you girl. You fight the good fight for that precious boy.

[Abby'sMom]

Hi Larkin,

I'm so sorry you are on this rollercoaster ride but I'm so impressed by the way you are handling things...keep it up! I know the waiting is so hard but hopefully on Tuesday you'll have some answers and be scheduled for Ian's CT scan...His 3-D CT scan!

I'll be praying that all goes well... :hugg

[CMMartos]

Good for you,, mom!

[Amy K]

Good job, Larkin! Give em one of these::smackdown

[dannlark]

:nono:smackdown :troutslap :meow :nono Love it Amy!!

I'll bring the boxing gloves! :sumo

*Larkin

[three.little.boys]

Larkin- sounds like a great plan! I can't wait to hear how it goes on Tuesday. It's excellent that you got a good mojo vibe from the 2nd NS's office!

[Candice]

Way to go Larkin, I'm so proud of you!!!!!! :hugg I'm so relieved to hear of the good vibes from the new NS.

[dannlark]

Thanks Ladies! Yeah, I need to feel comfortable with people to really connect...let alone cut my son's head opened...call me CRAZY!?!?!

Well, I just got a second e:mail back from Dr. Fearon (I inclosed those new "WOW" photos of Ian in it) and he said, "I would recommend surgery (for my son)". So..... We have the appointment tomorrow with the new NS, and if he concurs, then we take a trip to Dallas so Dr. Fearon can meet with Ian face to face. It makes me feel a bit better knowing that we aren't just LOONY, and that there is something there to be this concerned about.

Anyway, that's the update for today. I'll let you all know what happens tomorrow after the appointment. I've got to get my list of questions together today...I've got butterflies in my tummy!!!!

Send us some INFO. vibes!

*Larkin

[mrs j]

Larkin, this is wonderful news, well, bittersweet, but you know what i mean, im so glad you are now getting closer to some proper answers, ill be sending lots of positive vibes your way tomorrow, please let us know how you get on, Good Luck honey.xxx

[three.little.boys]

Larkin...
Glad Fearon got back to you. Those last pics of Ian really do tell a whole lot more about what is going on with his head. Is he still wanting to see Ian for a consult, or can he just book the surgery and do the consult the day before?? Especially if this new NS also agrees that surgery is needed!

Sending you some "info mojo"....

[dannlark]

Larkin...
Glad Fearon got back to you. Those last pics of Ian really do tell a whole lot more about what is going on with his head. Is he still wanting to see Ian for a consult, or can he just book the surgery and do the consult the day before?? Especially if this new NS also agrees that surgery is needed!

Sending you some "info mojo"....

Sadie, I haven't gotten that far with Dr. Fearon yet. I just sent another e:mail asking if he's heard of this new Dr. we're seeing tomorrow and that we're interested in come to see him if this new Dr. concurs with his opinion. We're taking it one step at a time, tomorrow is going to pretty much be the clincher...ack!! I REALLY hope that we finally get all the answers we need. Oh, and Dr. Fearon, again, recommended AGAINST the CT. I'm hoping that maybe this new Dr. won't need one to make a diagnosis and recomendation for surgery or not. We shall see... I'll keep you posted!

[mckennasmum]

gee all happening there! good luck tomorrow, can't wait to hear what happens!

[grayridge]

Larkin,
I can't wait to hear what the N/S says at your appointment tomorrow. We have our cranio team appointment on Wednesday and we are taking off tomorrow morning since we are a 6 hour drive away from the doctor. Keep us updated when you hear anything else. I am glad you got an answer from Dr. Fearon, I keep putting off getting his opinion on our little guy at least until after we meet with the cranio team. I fear the mild metopic diagnosis and am hoping for something more definitive. I don't think I can stand any more wait and see. Good luck again!

[Max's Mommy]

Good luck to those of you still awaiting a diagnosis! The waiting is awful and its a strange moment when you are actually hearing what you wanted and dreaded to hear for months....no you are not crazy and yes your baby needs surgery.

Good luck! I hope you get the answers that you are looking for - I know I commented before about the pictures but I can't imagine that there is a surgeon that wouldnt recommend surgery.

Let us know how it goes - and remember...chin up !

[beccad]

That is great news Larkin. Now you have answers and you can relax a little (ha ha). I'll be praying for you as you go through these next appointments.

[Amy K]

Glad you're getting some answers, Larkin! I would trust Fearon...but he's our CFS!! Hope tomorrow goes well!