Posted By Posting
Jul 15, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Her Oxygen Supplies Are In!
They gave us about 25 feet of tubing The only bad news is that they didn't give us a pulse ox! WTF!!!! I asked the guy why not and he said that insurance companies don't like to approve them but I can rent one for about 50 bucks a month. I guess renting one is better than not having one at all. Also, she did get a concentrator. It's called a DeVILBLISS. It's so big! But it does go to 1/2 a liter and up to 5. And that portable oxygen tank is HUGE!!!! When I was thinking portable, I was thinking like bite size almost. I have seen a guy in our town walking around with a little hand-held pack with the tiny o2 tank in there, but we didn't get that. We got a huge one that you have to wheel behind or in font of you. UGH! Good thing she only needs the o2 while sleeping. Well, we tried it during nap time and thankfully, she did quite well with it. In the hospital, we usually have to tape it on her face, but she did pretty good and didn't need any tape. -Sarah
Jul 15, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
That's great! Stupid ins companies! Cristy
Jul 15, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I don't know what a pulse ox is, but I am mad at the insurance company for not giving you one!! (I also don't understand why they would send a little kid GINORMOUS equipment but if they did everything rationally, we wouldn't be able to trash the insurance companies anymore...). I am glad, though, that everything came in! Wishing you two lots and lots of SLEEP
Jul 15, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
My grandmother is on O2 and she has the portable ones only because she may or may not need it during the day. For night she has an O2 making machine. NO TANK!!!!! She also does not have a pulseox. YOu may not get the small tanks because she is only on it at night.

Her machine looks like the one in this link....scrool down to see if, skip the pcitrue of the bald headed man..LOL

http://www.dmeonline.com/oxygen.html

NO O2 tanks needed, it makes it for her.
Jul 15, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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jedd's mommy and melissa
Jedd's mommy, yes, Quinn has that exact same concentrator. it makes the o2 for her, but it is non-portable. but the "portable" tank they gave her for on the go is HUGE!!! We only use that one when we are not at home. Melissa, a pulse oximeter is a probe that is put on the fingertip or a toe and it is hooked up a machine that tells you what the blood oxygen saturations are. Optimal saturations are above 92. It SHOULD be provided with oxygen (IMO) since they need to be on o2 anyways, their blood oxygen level should be monitored. Makes sense, right? -Sarah
Jul 15, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
The pulse/ox must be expensive so the insurance companies don't send them unless you raise a stink. I bet if you called and gave them righteous mommy h-e-double-hockey-sticks, the'd send you one.

I hope this works for her and you all get some rest. Good luck.
~Ronya
Jul 15, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OH YEAH that thing is NOT portable, It weighs a TON....LOL I hope that if you raise enough of a stink they will cave and gvive you the onitor. I woudl think a hcild on O2 should really have one....KWIM???? There are some at P2P that have gotten it approved. Maybe ask them and see hwo they got it approved.

And....

YAY YAY YAY on getting the O2 finally.

(I forgot that last time.....LOL( I hope this is the start of better sleep for Quinn!!!! And for her Mama too!!!!!!!
Jul 15, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Let us know how it goes! Progress!
Jul 16, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I'm so glad the O2 arrived, and that she is handling it well. I'm so fed up with insurance companies, and the medical field in generally, I could just scream... Keep us posted!
Jul 16, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I am so glad you finally got her some 02 Sarah!! Good work!! I hope this helps her to rest easier, and you as well. HUGS.
Jul 16, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
just what you needed!
Check with your
doctor first!