Trauma Headquarters and ADSG

For the last 2+ weeks my son has been very ill with an undiagnosed illness.  Started with a stomach ache, then swollen face, then a sore throat, then severe vomiting, then severe abdominal, joint pain and broken capillaries all over his legs and arms.  He has been in and out of the hospital.  Just got back out last night and is taking a nosedive again right before my eyes and there is nothing I can do.  I'm sure we'll back in the ER before tonight is over.  We live in the triangle right near Duke and UNC-CH, have already spent thousands, and there's nothing they have been able to do for him other than treat symptoms (dehydration, nausea, etc.).  He's been tested for pretty much everything (lupus, lyme disease, AIDS, lymphoma, leukemia, syphillis, hep A/B/C, appendicitis, gall bladder disease, strep, mono, meningitis, ulcers, Crohn's, colitis, rocky mountain spotted fever, and lots of other things....) All known illnesses have been ruled out, and he just keeps getting worse.  The "official" diagnosis is an unknown virus is causing an autoimmune disorder.  He has now lost his job, and because he turns 26 May 1st, his insurance will run out in less than 8 weeks.  He's scared he's going to die or be permanently disabled, and I'm pretty worried for him as well.  I'm watching the UNCTV fundraiser/25th anniversary special of Les Mis.  Valjean is singing "Bring Him Home," and the words describe exactly how I feel....

Oh Clbmom!  I am sorry!  This is terribly frightening!  He is definately in my prayers. In fact, I am going to my room right now and pray for him.  Please keep us updated.

Absolutely will pray.

blessings

Praying here also.

How scary!  Praying for a true diagnosis...and healing!   :coffee2:

Praying for you and your ds. 

I tried to tell you when I first read this that I was praying!  But my computer kept freezing and wouldn't let me post!

I can only imagine the fear and difficulty you face with this.  Please keep us informed!

 :angel10: :angel10: :angel10:

Oh, clbmom.... so frightening.  I am praying for your son (and you). 

((((((((((((((((((((clbmom )))))))))))))))))))))))))))

Please update when you can.  I am so concerned for you and your son.  Still praying.   :coffee2:   :coffee2:

Prayers from here, Clbmom.  How are things going?
 :coffee2:
anne

Thanks for all your support!  It means a lot to know so many are thinking of him.

After yet another hospital admission (and more ins. co. denials of coverage), DS is again back home.  He has to go back to UNC for a follow-up tomorrow on an outpatient basis.  Still no explanation, and I'm concerned b/c he's still running a fever and needing nausea suppositories and pain meds, but at least he is eating/drinking a little and is @ home.  I pray he continues to improve.   DH, DD5 and I are supposed to fly to Orlando tomorrow a.m. for 5 days @ Disney.  I haven't packed or done a single thing to get ready for this trip we planned long ago, have already paid for, and can't reschedule.  DH wants us to try to go anyway... so I guess it's going to be a long night.

SD1 and SD2 have been home with us the last week due to their Spring Break in college.  Here's the difference between RADkids and nonRADkids.  AD20 would have used my son's illness as an opportunity to get away with murder (okay, not literally murder, but theft, sex in our home, sneaking out with guys, and other stuff she wasn't allowed to do).  We have certainly had our issues with SD1&2 over the years (including SD2 facilitating contact with AD20 over the Christmas break as I posted), but when we need them, they can and do rise to the occasion.  They've been great all week - picking DD5 up and entertaining her so I didn't have to worry about that.  We went to pay them for babysitting, and they declined, saying what a privilege it was and how much they enjoyed their week with us despite DS's health crisis. 

I stayed up late talking with the two of them several nights, and took all three girls (SD1(21), SD2(19) and DD(5) out for pedicures today).  So enjoyable.  We all just said sad good-byes as they headed back to college after dinner.

In the meantime, AD20 has been attempting to Skype DS, asking what's wrong with him and whether she's going to lose her brother.... (It's always about her.)  My heart is so closed towards her these things aren't even bothering me that much any more; I mostly feel indifferent.

Thanks for the update.  Will keep praying for ds.  Hope they figure this out soon!

Thank you for the update, clbmom.  Glad to hear he is able to keep something down, even if it is only a little.  I will continue to pray.    :coffee2:

CT scans yesterday to re-check for lymphoma and abdominal tumors.   So stressful. 

Even tho I know this is ridiculous, I find myself bargaining with God that I'll do anything for DS to be okay... Even unweld my Bridge.  You all know how desperate I must be (and sleep deprived) to be thinking this way!

He's lost so much weight so fast, and continues to... I fear the dx is going to be worse than not knowing.

((((((((((((((((((clbmom))))))))))))))))))))))))

Hang in there and keep looking up to the Master of the Wind.  Will continue to pray.   :coffee2:

So glad for the update.

I keep praying!

blessings

((((((((((clbmom)))))))))))

Thanks again, so much.  We're back home and went straight from the airport to see DS.  He looks a lot better to me than when we left and says he's feeling a little better too.  We finally found out this afternoon his CT scans were all normal (HURRAAYYY!!!!!!), but he is still not well (vasculitis worsening, but currently afflicting only his skin - no major organ involvement suspected???) and his weight loss in under 4 weeks is now nearing 25 lbs.  We're all trying to keep the faith - as we go broke with insurance co. denials piling up.

AD hasn't spoken with DS in months, but since she found out he's so ill, has apparently turned his illness into a huge drama in HER life as if they were kindred spirits (which has never been the case).  I'm told she is feigning all kinds of concern.  If I wasn't so focused on DS, it would disgust me AD is ENJOYING his continued illness as a means to get attention.

clbmom,

You probably have all ready done this, but if you haven't, please ask for a SW consult with the hospital for help with the bills.  There may be money available from other sources that you don't know of, and at the minimum they can set up a payment plan for you.

A while ago I got caught between two insurance companies not being willing to pay for treatment and ran up a huge bill.  I filled out paperwork, worked with the hospital, and then paid $25/month for a very long time.

Financial stress on top of everything else you have going on is not needed.


Thinking of you, and glad for the good scan.

blessings

Thanks, Blessings!  I will definitely suggest DS ask for the SW consult.  He lost his job right when this all started and thought he had another lined up, but of course no one is going to hire him in the condition he's in now, and he quickly ran through his savings.  Because he's over 18, the bills are all his legal responsibility, but DH and I will likely wind up paying them and his outrageous COBRA premiums (isn't it ironic we're going to have to pay big bucks to the same company that isn't covering his treatment?!).  His docs are all pretty outraged re: the ins. co's no-pay position, so hopefully we'll (eventually) prevail on appeal....

 :BangHead: :BangHead: :BangHead:

So very sorry.  You sure don't need this right now. 

CLB - Sounds pretty overwhelming.  Continued prayers for ds and your family.  Please keep posting both for information and a reminder to pray.  Hoping for the best outcome on all of this.  As far as dd, we need a puking icon.  Hope you can continue to ignore her.  Easier said than done.

ClbMom,
Glad you were able to get away, even though it was stressful.  Very glad to hear DS is doing better! Will keep your family in our prayers.
 :coffee2:
anne

I am so sorry to hear this about your son.  I will be praying for all of you.  Please keep us updated.
Hugs to you

Well... DS is in a full-blown relapse yet again.  Am afraid we'll be heading back to the ER shortly.  I'm exhausted and he's very depressed.

Again, I'm just grateful I don't have to worry about what AD20 is doing in my absence.

I'm so sorry.  I'll keep praying.  :(

Even though it is hard, try your best to smile.  It is so hard when someone you love is depressed...and so easy to follow.   Be careful....and take care of you!

Keep us posted.

I'm praying your son gets better quickly and the doctors can figure out what is wrong with him.

So sorry CLB.  Praying for you all.

Still praying.  I can't imagine how worried you are.  I'd go nuts.

Thanks, all.  I'm up keeping vigil (as if that ever did anything other than make me cranky the next day!).

They think he has vasculitis (inflammation of the small blood vessels) affecting his GI tract, skin, joints and ear - but don't think it has affected his organs yet.  It's and immune response.  They believe it was triggered by a bout of viral pharyngitis and/or the Rx he was given for that sore throat.  His particular vasculitis doesn't fit any of the specific categories though.

He's on steroids and pain & nausea meds - which leave him terribly constipated and he may now have a bowel obstruction.... if not cleared soon, he may have to have surgery.  I just wish he could get some lasting relief.  He's been scared and now he's growing anxious and very weary.  Weight loss since 2/18 is over 20 lbs.  They say these ups and downs may continue for several weeks, but claim generally he is getting better overall.  I'm not convinced.....

Continue to pray.  I wish I could be there with you for vigil.  You so much need a good night's sleep that is worry free.  Please try to nap during the day.  You cannot take care of your ds if you get sick too.   :coffee2:

So this a.m. they finally determined DS has a bowel obstruction high in his abdomen (just as I've been suspecting for weeks now).  He has been drinking Go-Lytely all day, which normal gives people immediate diarrhea.  He's had nothing except more pain.  They want him to try to keep drinking this solution until tomorrow to try to avoid abdominal surgery, but things don't look good.... 

More drama for AD20 to play up for attention.

This is really more than you need.  My heart goes out to you.  My father had a bowel obstruction years ago while I was caring for him.  IT WAS MISERABLE.  In his case he didn't need surgery, things worked their way out just before the scheduled surgery.  I pray for the same for your son.
Try to get some rest, as the constant worry is draining...and don't forget your vitamins!

So sorry CB.   Its so hard to see our kids in pain.   I am glad they figured out what it is though.   Take care..of both of you!

Thanks for the update CLB.  Will be praying this works its way out.  Glad they finally figured out the problem.

DS is still very ill.  Weight loss is up to 32 lbs in the last 6 weeks; He is 6'2 and didn't have 5 extra lbs. to lose before all this began.  Thought he was going to have his gall bladder taken out on an emergency basis earlier this week, had the nuclear scan, we didn't hear anything and thought he was okay - just got the call it has to come early next week.  I'm not so concerned about him losing his gallbladder as I am about what this disorder and all the meds are doing to the rest of his body if they have destroyed his gallbladder (its malfunction is a result of the other prolonged problems, not the probelm itself).  Monday they're doing some upper GI work and a liver biopsy, and I guess they'll do the gallbladder afterwards.  

We made *some* progress with the BCBSNC denials, but there are still a ton of unpaid charge$.  One doc said we should expect DS's recovery to take up to another 3-6 months.  His ins. coverage (more like semi-coverage!) expires 4/30. He can go on COBRA for up to the next 3 years for ~ $500/mo., which is going to be tough for us, but better than the average $1K a day his care has been costing. I went and negotiated with his apt. complex manager; if we can get him moved out this weekend, she will let him out of his lease May 31st (instead of next January 31st!), so at least that's something.  But it means we have to figure out a way to pack his apt./move him out this weekend... Sigh.

On top of it all... AD will be back from Brazil in <2 weeks.  Uggghhhh.  I hear she's telling others she's coming home to help DS.  What a crock.  She has to come home b/c her VISA expires.  She planned her return a couple months ago BEFORE DS got sick.  And DS has no interest in speaking to her....

I'm succumbing to the stress.  Very snappy b/c of back pain & sleep deprivation & worry.  Yesterday I was diagnosed with 2 more herniated discs, so now I'm on the same steroids and narcotics as DS. Not sure how he and I are going to pack/move him - just praying the folks who've offered to help us really meant it!

Hugs, clbmom.  I have been wondering how things were going and am glad you posted.  I hope you both get to
feeling better soon.

Yikes, you have more than your share right now for sure!  DD13 and I are praying for your DS.  It is so scary when the docs can't figure out what is going on.  I hope you get some answers soon!

Will also be praying about this move.  I am glad she is letting him out of his lease.  At least that is something, and I hope along with you that you will have some good helpers with the move.

Things sound really hard right now.  I hope they get better soon!

I am so sorry.

I keep praying.

Keeping you in my thoughts.

blessings

Thanks for your care & concern!

One "upside" of all this is that it has sure taken the focus off our situation with AD20

Even those who had been really critical of our "letting" AD20 leave our family and not begging her to come back seem to feel bad about continuing to bash us in the middle of this pretty heavy crisis and have been pretty nice (at least to our faces).

I'm sure the bashing will resume if/when DS gets better... but the break has been nice!

Could you ask your church for volunteers to help you pack & move?

((((((((((CLB)))))))))))))

I see by the time stamp on your post that sleep isn't happening for you.  Can't imagine how stressful this must be.  Will keep praying.

This all sounds so overwhelming.  I hope a TEAM of people show up to help with this move.   I can't imagine your stress right now, especially w AD on her way back.   :-\
Hugs and prayers to you!!

Thanks again!!!  No, not much sleep around here (read: crabby mommy).

One of my own personal challenges is asking for others help and letting them do it.  I tend to let myself get very overwhelmed over a prolonged period and then can't bear the thought of having to manage one more thing - including any help.

DS thinks he can manage making a few calls today, and since he has a ton of young, strapping male friends, and lots of cute girls falling all over him, I have suggested he ask the girls to pack boxes and the guys to move them.  I can let them in and lock up after; if he can't handle this, I will call up church members, but most of my friends are my age (mid-40's and have the same lifting issues, etc. as do I).  

I did just get a piece of GREAT news via SD2:  Amazing BF was not accepted to any of the US Ph.D. programs to which he had applied (Columbia & a couple others) to begin late this spring/early this summer.  Apparently, although he's admittedly very smart/talented, he's not the "be all, end all" he believes others feel he is and took the rejection pretty hard.  So he is applying elsewhere for the fall... and COINCIDENTALLY AD20 has suddenly decided she doesn't need to come back to care for DS after all and will stay with BF in Brazil through June.  Yippeeeee!!!!  (Separate continents are working out okay for us!)

That sounds great!  And you get a longer break to take care of ds and yourself.  One huge stressor out of the way, for the time
being.

clbmom,

Yeah for young strapping friends and cute girls!  They usually work for pizza!  That is awesome!

And I am so thrilled to hear that Amazing BF has decided to stay on another continent and that AD20 is staying with him!  That is lovely news!

I am so thrilled for a little good news in the midst of all of the stress.

Still praying for your son!  Not feeling well is the absolute pits!

blessings

Wow...what a lovely turn of events, or two.    :coffee2:

I just caught up on reading this thread.  I'm sorry your son is still doing so poorly, but happy about the way things are working out:
     

• apartment
       help with moving
       AD20 to stay in Brazil
       Cobra

Seems to me that God is answering prayer!!

Ditto what Jeannie said.

I will keep praying.  Try to get some rest...

Cat nap if you can't do more.

Been away from the boards for several days.  How is your ds doing?