Pages: 1 [2]  All   Go Down
Print
Author Topic: Sedona's lungs  (Read 24828 times)
0 Members and 1 Guest are viewing this topic.
Fay
Moderators
Hero Member
*****

Karma: +2/-0
Offline Offline

Posts: 1294



WWW
« 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
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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
Logged
Fay
Moderators
Hero Member
*****

Karma: +2/-0
Offline Offline

Posts: 1294



WWW
« 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!  
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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 :  
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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
Logged
Birdbomb
Head Cheese
Administrator
Hero Member
*****

Karma: +9/-1
Offline Offline

Posts: 7792


Head Cheese


WWW
« 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.
Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
2kids and a dog
Guest
« Reply #37 on: January 07, 2007, 01:02:16 PM »

I will be here worrying with you!

Post an update when you can.
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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:  
Logged
Fay
Moderators
Hero Member
*****

Karma: +2/-0
Offline Offline

Posts: 1294



WWW
« 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.
Logged
GB
Suspended
Jr. Member
**

Karma: +0/-0
Offline Offline

Posts: 98



WWW
« 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
« Last Edit: January 13, 2007, 06:54:29 AM by GBean » Logged
2kids and a dog
Guest
« Reply #41 on: January 14, 2007, 01:10:38 AM »

Thanks for the update.  I hope Sedona is feeling better.
Logged
Target
Administrator
Hero Member
*****

Karma: +0/-0
Offline Offline

Posts: 1330


WWW
« Reply #42 on: March 03, 2007, 09:30:26 PM »

How is Bones?  Any improvement?
Logged

"Be careful about reading health books. You may die of a misprint."
Mark Twain (1835 - 1910)
Pages: 1 [2]  All   Go Up
Print
Jump to: