Stephen's update and transfer

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Tesscorm said:
Just like the diagnosis, I know it just takes time to get used to the idea and adjust and, no doubt, I'll be fine with it soon... think I just need some wine to dull the raw edges for now.
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Amen to that Tess! Every time they change something, it feels like starting all over! Sorry I missed the party!!!
 
YES! Some of those busses do have poles! I know! And dancing firemen...don't ask.

I'm in but since I live up north no fair cuz by the time you girls get here I am sure there will be no more wine left, no room on the pole and the poor fireman will be all tuckered out. So if you don't mind Angie and I (and all our other northern friends) will just start partying with the national guard while we wait for you to pick us up!
 
Come on Dexky... there's always room for one more 'uniform'! :D

You must have some sort of uniform lying around!!! :lol:
 
Hahaha, yeah, I could be the pole dancing UPS man I guess…but I'm afraid I might injure myself!!
 
Tess,
I finally had a chance to catch up. So glad the remicade approval came through. When is the first infusion?
 
Haven't heard. Left a message for GI on Thursday but their office is closed Fridays and tomorrow's a holiday here... won't hear from him until Tuesday, at the earliest.

Still have to check a couple of things with the insurance... the approval is a bit confusing (but 'normal' from what I've heard), the actual medication is covered but only up to their 'estimate' but they don't give their estimate??? Also, administration (the process of infusion) of the remicade is not covered??? But, apparently is covered by some other agency??? So, still have to check into it a bit... :ywow:
 
That sounds like a weird and confusing process. It seems like all these beaurocracies like to do is confuse people.
 
I know!!! :ybatty: I'm going to call the insurance company but also speak with my friend who's daughter is on remicade... she's already gone through all this red tape so will, hopefully, have some advice for me.
 
Hugs I know before DS 's first infusion
We got an answer like " it should be covered but they couldn't guarrentee until a claim went through" talk about nerve wracking .
 
OMG?!?!? How can they give you an answer like that??? Unbelievable what insurance companies get away with??? A while back I contacted our insurance company about travel with crohns, if it was an issue, etc. They told me, as far as pre-existing conditions, if there was an incident, if the incident was accidental or completely unexpected, it would be covered. When I questioned further regarding 'completely unexpected' and that would qualify or exempt that condition, I was told it would be determined on a case-by-case basis so, basically, there was no set criteria... so, does it all depends on someone's mood that day?!?! :eek:
 
Insurance does sound rather confusing. Hope it all gets sorted out. It's frustrating when getting things done quickly and simply depends on whether the person in the office at the other end can be bothered that day or not. It's so nice to get someone who is helpful and polite!
 
Stephen's first infusion is Wednesday! Why is it when you want delays, everything goes at the speed of light!?!? The insurance issues were actually so much easier than I thought, booking the apptmt was easy, my husband's going to take him, etc.

God, I literally feel sick to my stomach and I've got a huge lump in my throat! Ugghh!!! It'll get easier, I'll adjust... Can I just drink myself silly until I reach that point? :cry:
 
Tesscorm-
I am so sorry you have to deal with this. Not an easy thing I am sure. Drinking yourself silly may help a little :p I wish you all the luck and Stephen will be in my thoughts.
 
I know the feeling exactly....it takes a while to process each new step (that's why when the time is near we always wish we had MORE TIME!!). You will adjust, and in the meantime, if you can't drink, breathe!!! Stephen will be ok and you are doing, after much research and soul searching, what has been recommended and is needed to stop any progression. Hope all goes well with his first infusion.
 
Thinking of you. Hope all goes well - I'm sure everything will be good. A few nice chilled glasses of wine sounds like a good plan!
 
Hugs ...
I made DH text me throughout the first few before I relaxed .
Of course ... When he was trying to tell the nurses all the drugs etc..,
I kept texting wanting updates . :eek:pps:
 
Yep, I'm sure I'll be calling my husband... 'how is he?', 'is he flushed?', 'is his throat itchy?', 'DID I HEAR A COUGH? :eek:', 'are you SURE it wasn't him, are you in the same room?', 'even after they let you leave, stay in the car for an extra 15 minutes... just in case! MLP's son got a a bit of a reaction when they were almost out the building, SHE WENT BACK!' :lol: He may be the one needing a few drinks afterwards!

Still feeling sick at the thought of it all (why do ANY kids have to get sick?!?!? :ymad:) but I'm trying not to think about it! :( Actually, trying to remember all the reasons why this is a good thing!

(Ugghh, just got home from a borrriiinng business dinner/meeting and now my daughter needs help with accounting! Fun, WOW! ... at least, it's something else to think about! Will have to catch up all else tomorrow... :ghug:)
 
Sending hugs and good luck tomorrow. That really did go through fast after all that. Keeping my fingers crossed. Have they talked about pre medicating him to prevent a reaction? Caitlyn had to take Tylenol one hour prior to arrival and then they gave her IV Benadryl before the infusion.
 
Did ask about premedication and nurse said GI prefers not to if it's not necessary (he's worried about adding unnecessary drugs! Seriously?!?!? :yfaint:) He will add premeds if/when there's a reason...
 
Good luck! We had all of 2 days between deciding to start Humira and my son giving himself the first shots! Everything just fell into place super fast - gasp!
I was a big mess of nerves, it was hard not to build it up and think of the worst case scenerio but now that he's done it a few times I'm relaxing... a little... but a big glass of wine and a distraction (like helping with 'accounting' - lol) are always good :)
Here's hoping for an uneventful day!
 
S mom said:
Everything just fell into place super fast - gasp!
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Yeah, why is that??? :ymad: :lol: Never did hear back from the GI regarding Stephen's d, vomitting, etc. the other week yet I've had lots of calls, voicemails, email confirmations, CDs, information booklets, etc., etc. re the remicade! :voodoo: They've been so efficient it's scares me :eek:! :lol:
 
Centocor gives big incentives to doctors who prescribe and administer Remicade, is my very strong suspicion based upon similar (and even more suspicious) behavior at our local children's hospital, which was a factor in our decision to switch to a larger research based hospital.
 
Actually, the efficiency is not coming from the GIs office...

(okay, the way I've understood it... and once you read it, you'll understand why I thought it was going to be a complicated process...:ack:)

Not sure if it's done the same elsewhere but, here... I was assigned a rep from some agency that is the liason between me and everyone else (not even sure who or what the company is :confused:), she sent in the insurance claim, sent me a CD describing the infusion, information booklet, got prescription from GI and arranged for pharmacy to deliver to infusion centre, etc. Here, remicade is administered at independent infusion centres.

The actual medication is covered by insurance but the administration/infusion of the medication is NOT covered by insurance. The administration is also NOT covered by the provincial healthcare unless it's done in a hospital setting (however, remicade is administered outside of a hospital because, if IN a hospital setting, the insurance refuses to pay for the medication as anything done in the hospital should be covered by the provincial healthcare). :ybatty:

So, when I asked about this admin cost (because, somehow, the clinic's costs must be covered, right?), I was told there would be no cost to me. hmmm??? so who's paying the rent, the nurses, the doctors, etc.... not provincial care, not insurance... must be the drug companies? Hence, the efficiency! No criticism intended towards the drug companies - but they are working to generate a profit, unlike our provincial healthcare that runs over budget ALWAYS, has long waits, not enough doctors/nurses, etc.

:)
 
Okay, just shoot me now... Stephen's got a cold, eyes are glassy........ :yfaint: :ack: :ybatty: I've told him a million times to make SURE he stresses to the nurse tomorrow that he has a cold, that he has a bit of phlegm, etc. Will be taking his temperature tonight and tomorrow morning... :voodoo:
 
Awww, Tesscorm, I know it is just one more thing to add to the stress and I am so sorry! I was the same way last week when they gave C an early Remicade treatment in hospital I think I told everyone who would listen including the nice janitor lady that came in to bring new towels that he had some kind of funk or creeping crud. It all turned out well and I got to hear about the janitor lady's nephew that is at culinary school(how'd that happen?) I hope the cold is nothing to worry about and he is feeling better soon!

Good luck tomorrow, you will be in my thoughts! Sending hugs your way!
 
No fever :thumright: but sneezing, shiny eyes, etc. Hopefully, its just a bit of a bug and will be lessening by tmrw... But, I do remember lots of kids going with colds. Etc. Think I'm more concerned if there's fever...
 
Hope everything goes ok Tess Jordan in onto his fourth infusion on 11th of March and his consultant told us last week he is now in remission bloods perfect first Time in nearly 2 year so try to stay positive about Stephen I'll be thinking and praying for him xxx
 
I had to forgo some sleep and hop on here and see how's it going. :biggrin:
I hope all goes well and he feels good about his decision.
I hope you feel good about the decision too but I know that might take awhile.:wink:
 
Thanks everyone!!! All went well!! :banana:

Nurse said his cold wasn't a problem. He played online computer games, said the nurses were very nice and that there was another boy there, his age also having his first infusion for crohns (unfortunately, they didn't have a chance to talk...) AND he answered my numerous 'how r u?' texts! :ack:

Had a bit of a breakdown when my husband said he just left Stephen once the paperwork was settled :)eek: Did he not hear ANY of my dire warnings of what could happen!!!) :)outahere:momma's coming! :lol:) But, it seems he managed just fine! :D

Thanks guys for holding my hand all the way through this!!!! :Karl:
 
:ywow:Your hubby left him????????????? Forget about about mama coming...it's Crohns forum's coming!!!!!:ack:

Still I'm so happy it went well. I hope you sleep well tonight!:wink:
 
So glad it went well!!!
C and hubby were much more laid back about the first infusion than I was isn't that always the way!!!
 
Yeah, it is... Hubby said 'he's 18, he doesn't need me there.' but I said that '18 will quickly turn to 8 if he has a severe reaction at his first infusion and there's no one there that he knows!!! :ymad: Oh well, all turned out well :p

But, yes, seems guys (young and old) are much more relaxed about it all...

...shhhh, my friend takes her daughter to the same centre, maybe I'll schedule Stephen's apptmts to coincide, then I'll know a 'mama' will be there! :lol:
 
So glad everything went well. Would have had a fit at my husband too had he done that :ybiggrin:.
 
I disagree with your husband totally I think whether your 8 or 80 or anything in between it's horrible going for a significant medical procedure on your own. At the moment your the obvious support person to attend, in time our kids will hopefully find other people to fill that role at least some of the time.

I read with interest a post by a 20 something on the forum about trips to casualty he mentioned he always takes his brother, which I thought was great, I hope one day my children will be able to lean on each other for support with things like that. Particularly as it's unlikely they'll live in the same country as us once they finish High School.
 
Doesn't hubby know that he has to stick around for your peace of mind, not necessarily Stephen's?

Doesn't he know how hyper vigilant crohn's mommies are?????:runaway: (Dexky, we consider you a hyper vigilant crohn's mom)
 
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Just thought I'd share something... once in a while, Stephen's surprised me at a GI apptmt by asking a very specific question or knowing certain terminology but, this morning, I realized that he really does listen! :D While the outward signs may be eye-rolling, sighs and lots of I know!s as they walk away :lol:, the knowledge and example you share with your kids DOES sink in...

On the drive in today, Stephen was talking about yesterday's infusion and asked me how the GI was going to determine if remicade was working?? He said his blood levels were normal last time so those couldn't be used and that he wanted an MRE! I told him we/I needed to schedule an apptmt for a 3 month follow-up and we could ask then, Stephen said he didn't want to wait 3 months for the apptmt and then ANOTHER 3-4 months for an MRE, that the remicade might not be working, inflammation continuing and we wouldn't know for 6 months. He wants me to call today to book the MRE before the apptmt so we can discuss the results at the 3 month apptmt! :worthy: He's listening and learning (and even beginning to advocate)!!!! :D

Unfortunately, I had to bring him into reality and explain that I could not just call and book the MRE and there's no way the GI will do that until the follow up so.... patience is the next lesson! :)
 
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I agree but I'm 99% sure they won't book the MRE until the GI sees him... but, it won't hurt to ask if we can book an MRE now... :)
 
Glad to hear it went well... and that every once in a while our teenaged kids show signs of amazing adult maturity and understanding in all this - congrats on showing him the way!
 
So glad it went well! I'm in shock that he got left to face it on his own, but so glad nothing went awry! Your young man is showing himself the man he is becoming!
 
Yeah, my husband and I sometimes differ on what we think is acceptable for them to handle on their own... I think, over the years, it's led to a good balance but, at times... :ymad: :ack: :voodoo:

I have also wondered if, to a degree, it's how my husband deals with the crohns. I think he doesn't like to believe it can be as serious as it is (ie remicade infusion risks and the fact that, regardless of the risks, we still have to give it to Stephen). It can be frustrating at times but... I suppose we all deal with it as we can.
 
Well hush my puppies and prune my magnolia's! What a ride! :hug:

I am sooooooooooooo relieved to hear that all went well Tess...:):):)...and that Stephen is starting to advocate for himself! Well done Mum! :medal1:

May the good times keep on keeping on. :heart:

Dusty. xxx
 
I'm a bit behind Tess :ybatty:
But, sooooo happy that his infusion went so well !! :dance:

I think it's great that your husband is involved in Stephens care. I'm sure it drives you crazy when he does things like going against your hypersensitive mommy intuitions tho :rof: .
I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me :lol:
I'm sure my husband would take one of them, if I'd let him....:eek2:

I think it's a good balance for you :hug:
Guys just have a different way of dealing with things like this, especially with their sons.
 
Crohn's Mom said:
I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me :lol:
I'm sure my husband would take one of them, if I'd let him....:eek2:
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It's tough for either of us to take time off for all the apptmts so we usually split the apptmts so that he does the tests (MREs, ultrasounds, remicade, etc.) and things like sports-related physio and I do all the doctor apptmts.

:lol: I would never let my husband take Stephen to a GI apptmt WITHOUT me! He would never ask as many questions as I do, I'd end up with more concerns than before the apptmt! :eek: And... I'm way too much of a control freak to not be at the apptmts - it would almost be like sending Stephen on his own! :lol:

Case in point, Stephen came home from the infusion last week and said 'oh, yeah, the nurse said my GI is the most aggressive she knows at fighting crohns and even when other GIs would stop, he keeps going.' WTF?!?!? What does THAT mean??? :eek: I asked him 'Did she mean that in a good way or bad? What do you mean other GIs would stop? Why would they stop and not your GI?' His answer... 'oh, I don't know, it was just conversation.' :yfaint:

......am seriously considering going to the next infusion myself! :ybatty:

:D
 

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