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« on: November 16, 2006, 01:13:23 PM »

Sedona went to the pulmonogist yesterday and they told us that she has Children's Interstitial Lung Disease. We still do not know the cause but in 2-3 weeks she is going in for a 6 piece biopsy. We tested her for parasites, valley fever and infections and everything came back clean.

They took 12 large vials of blood yesterday too.  She didn't even cry out like usual.
She has been having alot of Seizure activity and retreval issues.  She seems to get upset easily.

We will keep you posted.

Gina
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« Reply #1 on: November 16, 2006, 02:01:35 PM »

Oh Gina. My heart goes out to you and Sedona. This is one of those Mom's worst nightmare things. Thanks for giving us the update and hope all goes well with the biopsy. That would be scary too especilly since her seizures are worse. If there is anything we can do please let us know. You guys are still in our thoughts and prayers. please know that. Fay and Scott
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« Reply #2 on: November 17, 2006, 01:48:57 PM »

We just found out today that the surgeon that they wanted to do the biopsy is no longer taking children. He was the only one that has experience with this type of Lung disease. Now we have to go out of town and I don't know what that all entails.  Do I really want to take her to someone new and have them do their own testing and waste time?? I don't want that to happen.

Needless to say that I am not handling this all that well.  I HATE the waiting game with the risk of someones life hanging in the balance.

Gina
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« Reply #3 on: November 17, 2006, 03:01:44 PM »

I have been trying to call you!  But the cell number I have has someone else answering GRRRR!!! :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  
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« Reply #4 on: November 18, 2006, 05:04:30 AM »

OH. Gina!!! How horrible! I don't know what to tell you....
Seems like this doc would at least make an exception in Sedona's case though. She's been needing this way too long as it is. My thoughts and prayers are with you Gina. Please know that. Thanks for keeping us updated too.  
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« Reply #5 on: November 26, 2006, 07:50:01 PM »

I called the PULM specialist in Denver and she refered me to a PULM in Phoenix. We have an appt with them on Jan 2. We are hoping to ge in to see him the week between christmas and new years. We will keep you posted. We are going to have the biopsy done at Phx children's hospital.

Gina
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« Reply #6 on: November 27, 2006, 02:49:12 AM »

Thanks for the update. I held my breath and said a prayer before reading it. I was scared that they had ran you into a brick wall again. We've had lots of major problems with Scott but not this bad so my heart goes out to you. I can't imagine having to wait this long especially since it is a major organ that's involved- I mean a person has to breath, even special needs kids. You know that if Sedona was one their kids, feet wouldn't have dragged this long. THAT is what bothers me the most. A sweet angel like her getting put on the back burner for no real reason at all. It isn't like you haven't been making phone calls or not doing anything to help her. You've done everything the way you should have so seems like a few docs, nurses, etc would have made sure she was seen much sooner than this.
You, Sedona and your family are in my thoughts and prayers.
Please keep us posted as you can. Take care, Fay
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« Reply #7 on: November 27, 2006, 01:46:43 PM »

We just got a call from the Pulm here and all her tests that have come back are fine. Just 2 more still out there. I'm glad that they came back fine but we still have no answers.

Hope you all enjoyed Thanksgiving.  Maybe next year we will celebrate alone and we will have a great Thanksgiving.  
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« Reply #8 on: November 27, 2006, 06:04:32 PM »

They are still going to do the biopsy though aren't they? Hopefully that will show something.  
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« Reply #9 on: November 28, 2006, 01:33:28 PM »

Our hearts are with you and Sedona.  :hbeat:

Please keep us posted.


 :im_033:    Labrat      :im_033:



                   : xmas :  
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« Reply #10 on: November 28, 2006, 04:16:13 PM »

Quote
Do I really want to take her to someone new and have them do their own testing and waste time?? I don't want that to happen.

Gina
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YES.... YOU NEED to take this child to another doctor...
If she needs to go across the states then please take her and get her all and any help you can get her.

If money is an issue then contact charity in your area and ask them for help...There MUST be someone who can help you with transportion.
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« Reply #11 on: December 04, 2006, 04:30:36 AM »

Was wondering how this little girl is doing?

Any thoughts on getting a new doctor to try to help her?

You may want to see if your doctor will refer you to MINCEP  www.MINCEP.com

THey are wonderful and may be able to give you insight to help your daughter.

please let us know what you are doing for help and where this is going

hugs
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« Reply #12 on: December 11, 2006, 01:55:05 PM »

We have decided to take her to Phoenix Children's Hospital for the biopsy. She is seeing a Pulm on the 2nd of Jan and will have surgery the next week. Hopefully not on her bithday (Jan 6th). We got a letter today from the Pulm here and he said in the letter that they are going to do an open lung biopsy (cut her open). Great just what she needs more scars and tubes coming out of her. She has been sick with a cold for 3 weeks and now it is in her lungs. We are going to the Ped this week to get her on some antibiotics.

Please keep her in your prayers, this is a scary time for us.

Gina



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« Reply #13 on: December 12, 2006, 02:49:37 AM »

Hello Gina. I'm glad to hear that things are finally beginning to happen for Sedona. God knows you guys have waited long enough already. I hope that they can figure out what to do to help her. She'll def be in our thoughts and prayers through this.  :bigarmhug:  
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« Reply #14 on: December 17, 2006, 04:22:52 PM »

Youv'e got it Gina - I will definately keep Sedona in my thoughts and prayers.

I hope sh'es feeling better.
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« Reply #15 on: December 20, 2006, 05:21:03 AM »

I am so glad you went and found a new doctor....

As parents we need to go to any lengths to do what is best for our children.

Please keep us updated on how she is doing.


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« Reply #16 on: December 26, 2006, 02:36:42 PM »

Will be thinking of Sedona on Jan 2 and will have my fingers crossed that the doctors can finally get to the bottom of her problems.
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« Reply #17 on: December 27, 2006, 04:36:57 PM »

We spent the day after xmas in the ER with low stats, severe coughing episodes and high fever. They wanted to keep her but couldn't find a bed. She is still really ill and of course we are not at home so the ped and Pulm are out and the one that is doing the biopsy is out of the country until the 1st. If she is still coughing will they still do the biopsy?? The xrays looked worse than the CT. Now instead of just spots there is alot of really condensed areas that there is no normal lung tissue in. The Pulm that we see at home thinks that she has a viral infection. the blood work came back clean for bateria. Keep her in your prayers. She is sleeping from 6pm to 12 noon. Way too long to sleep. Also big increase in seizures.
 
Best wishes to you all,
 
Gina
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« Reply #18 on: December 27, 2006, 05:18:41 PM »

Oh, Gina! my heart goes out to you and to Sedona. You all are def still in my thoughts and prayers. Please try to keep us posted as you can. Fay
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« Reply #19 on: December 27, 2006, 06:14:02 PM »

I am so sorry Sedona is sick.  I hope she's feeling better today.
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« Reply #20 on: January 01, 2007, 06:49:00 AM »

Happy New Year! Sedona is feeling better today. Woke up with a smile on her face and was tickling me this morning. She is still coughing but not as much. Her appt is tomorrow and I was hoping to also get a appt with a neurologist. Her seizures are really bad again and we just increased her meds 2 weeks ago. We will keep you posted.

Gina
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« Reply #21 on: January 01, 2007, 07:06:36 AM »

Thank you for keeping everyone up to date on her condition.  It's so hard when they are sick and you don't know what's wrong.  We will be thinking of her and having our finger crossed!

Hope the holidays were not as stressfull as Thanksgiving was, I think I'd take a shovel full of desert dirt and dump it on Sara's underwear drawer if she did that crap to me.  lol
:spiteful:  
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« Reply #22 on: January 02, 2007, 04:59:29 AM »

Hey Gina. Don't know if you'll get this before you leave for Sedona's appt today but wantd you to know I hope all goes well and you can finally get some much needed answers. You are in my thoughts an prayers. Hope that you'll update us as you can. Fay
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« Reply #23 on: January 02, 2007, 05:06:12 AM »

Good Luck with the appt...

Ask TONS of questions and please keep us updated
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« Reply #24 on: January 02, 2007, 06:00:54 AM »

Come on Gina, we're all waiting.....What does the doctor say????
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« Reply #25 on: January 02, 2007, 09:46:50 AM »

I know! Curiousity is killing me too! It's time to start rechecking here more often to see if we have an update yet! She's been on my mind all day long.
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« Reply #26 on: January 02, 2007, 01:05:36 PM »

I'm new to the board and have been reading and keeping track about Sedona.  I hope all went well at neuro today.

Mayra
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« Reply #27 on: January 02, 2007, 01:08:43 PM »

I called her cell and left a message on her voice mail but no answer yet, If I don't hear from her in a few more hours. I'll call Sedona's cell, she always has that with her.
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« Reply #28 on: January 02, 2007, 03:19:44 PM »

Well hello to all of you anxious readers.

We went to see the Pulm at Phx children's hospital and he informed us that most of the info that we got from the Pulm in Las Vegas was wrong.  One thing that they kept saying is that she is as big as an adult so we will treat her like an adult. This should never be done. We are having a broncoscopsy done on Monday at 5 am. 4am my time yipee. This is when they put a scope into her lungs and put in sayline and suck out all the fluid to test. These result should be back no later than 48 hours and depending on the results the biopsy may follow. He thinks that most of it is from asperation and if this is the case than she will be put on reflux meds and we will have to come back in 3 months. I truely don't believe that it is asperation or reflux. She is having a hard time breathing and eating and she makes noises when she eats like she can't catch her breath. We had her favorite dinner tonight an all she ate was a piece of bread and a half glass of milk. No appetite. We will try and keep you posted. Pray for my sanity I am staying with my parents and it is Hell.  :Violent:  Talk to you all soon. If you need to call me Birdbomb has my number.

Thanks for the support,

Gina  
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« Reply #29 on: January 02, 2007, 03:32:44 PM »

I am glad this doctor is doing more for her.

Hopefully you can get to the bottom of what is going on.

Staying with your mom...WOW that sounds like real fun, Late nights chats and morning coffee...


LMAO better YOU than I  
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« Reply #30 on: January 02, 2007, 06:21:35 PM »

Thanks for the update Gina.
Do you have a pulse ox? If so you can see if her oxygen level is dropping when she eats. If so maybe just giving her some oxygen when she eats might help a little bit. At least until you can get her tested. If she was asperating, she'd be coughing and choking when she eats, drinks or both. Scott IS asperating when he eats- sometimes. Not every meal thankfully. They increased his Prevacid last Weds and it did seem to help- unless it's his wedge pillow helping him or the combo of both- but now he has 5 small ulcers in his mouth so I've got to put in a call to the GI doc tmorrow about that. Right before Scott had his g-tube placed we tried several diff meds and Nexium worked better than any of them but Georgia won't pay for it. This time they put him on Prevacid then doubled the dose. Medicaid will only pay for 30 pills a month. If I've got to pay out of pocket- we don't have any insurance- then I'm going to see if we can try Nexium again. This is getting crazy.
They are going to admit her into the hospital and put her to sleep to do this aren't they? Will they go down the throat or what? Any idea how long she'll be in the hospital? Am so glad to hear that this doc realizes that although Sedona is adult size, she isn't an adult so shouldn't be treated like one. I know that made you feel better too. take care, Fay
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« Reply #31 on: January 03, 2007, 07:07:56 AM »

Fay-

The scope is through the nose and yes she will be completely sedated. The Pulm here is really good and didn't want anyone else doing the scope.  He is very professional but also has a sense of humor and Seddona's yelling during the appt never really faised him. I told him that I had great migraine meds in my purse if he needed them and he laughed.

We have an appt with the Surgeon tomorrow and they are going to do the biopsy next week if the scope shows nothing. He thinks that she may have reflux but I don't think that she does. She never had it before. Not that she could tell me. As Far as aperation I really don't think so either. She just makes gasping noises when she eats. Hard to explain what it sounds like. I will use the pulse oox and see today if that is what is going on. Thanks for the tip.

Gina
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« Reply #32 on: January 03, 2007, 07:47:15 AM »

Thanks for explaining all this to me. So far Scott hasn't had this done so didn't know what it was exactly. Trying to figure out if it was somthing simular to putting in a NG (nasal feeding tube) or was more involved. It's def much more involved!
I am so glad that you finally a found a great doc for her. Having one that has a lot of patience and a sense of humor makes it even better.
By your description of how she sounds when she eats, my guess is she prob sounds like somebody with a severe head cold or sinus infection. Hard to breath and eat too!  
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« Reply #33 on: January 04, 2007, 03:32:41 AM »

Exactly!! She seems to have problems cordnating eating, breathing, and swallowing .  We see the surgeon today. Hope he is good. Would like to say great but afraid to jinks it. We will keep you posted and I will call you later Fay.

Gina
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« Reply #34 on: January 04, 2007, 07:41:35 AM »

The surgeon has her on his docket for Weds. Will will know by Tues if we will need to have the biopsy done. I think that it will be done once they see the last xray.

Gina

Sedon'a 10th Birthday is Sat.  : party1 :  
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« Reply #35 on: January 07, 2007, 04:57:31 AM »

WE ARE HAVING A BRONCOSCOPSY DONE ON MONDAY AT 5AM AND THE OPEN LUNG BIOPSY ON WEDS AT 9AM. I HOPE TO GET HOME BY THE 17TH.

GINA
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« Reply #36 on: January 07, 2007, 06:29:16 AM »

Poor little thing will be so scared.  I know how much she is frightened by any medical invention.  I just hope she will cooperate and you don't become a bigger basket case! :bigarmhug:

You guys will be in my thoughts and prayers.
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« Reply #37 on: January 07, 2007, 01:02:16 PM »

I will be here worrying with you!

Post an update when you can.
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« Reply #38 on: January 10, 2007, 01:31:50 PM »

We got a call yesterday and they cancelled the biopsy. The Dr. in Phx said that she has reflux and aspiration and that is all. We knew that they would find aspiration because of the severe cold/cough last week and the vocal cord paralsis.

All the specialists (Denver and Houston) said the the brroncoscopsy is not a accurate test for this lung disease and the doc in Phx also told us this today, but also told us that "Phx children;s believes that this test is valid". Needless to say PCH is not a specialist and to go against a specialist is stupid. We are going to have to wait for 2 more weeks to see if the reflux meds are helping. It would help if she had REFLUX. It was for a dx of possible reflux. Nothing like waisting more time.

Gina :Really Mad:  
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« Reply #39 on: January 10, 2007, 01:46:36 PM »

OH Gina! So you are still having to wait?! this is insane!
I don't know if this helps or not but you ain't alone in the reflux boat with asperating. At least i know Scott does have severe reflux but i know there is something else going on too but i have no idea what. We are on double doses now of Prevacid. next we must try nexium in several doses before we can get a referral to see an ENT. Georgia medicaid won't pay until it's been proven that the meds don't help. And get this- medicaid will only pay for 30 pills of these meds anyway. They must think it's ok for us to pay out of pocket for meds that they know don't work. Otherwise they'd pay for it regardless of the dose. It's crazy.
If it was their child things wouldn't be happening like this. my heart is with you my friend. I wish both our kids would hurry up and get the help they needed months ago. But am praying Sedona goes first. Scott's problems are mild compared to hers.
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« Reply #40 on: January 13, 2007, 06:54:06 AM »

We are going home today!! Still know nothing more than before. But we will keep you posted.

Gina
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« Reply #41 on: January 14, 2007, 01:10:38 AM »

Thanks for the update.  I hope Sedona is feeling better.
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« Reply #42 on: March 03, 2007, 09:30:26 PM »

How is Bones?  Any improvement?
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