Posted By Posting
Dec 12, 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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Quinn's o2 follow up
Well, it didn't go as i expected. I expected for her o2 sats to be fine. They checked it on the o2 and it was sitting at 96% and then off the o2 it immediately dropped down to 92%. now this was just a spot check so we don't know how low it is going but i do know that it went down to 90% at therapy. And so, Quinn is to stay on oxygen continuously until our appointment with the pulmonary doctor on january 6th.

This is new for her. She doesn't normally sit with low sats during the day. And she isn't breathing abnormally. Her breaths sound good to the doctor so what could this mean?

Her PT thinks it might have something to do with her increase in seizure activity.

Oh, she did weigh in at 30 pounds and was 35 inches tall. Of course this weigh in was after two meals and with clothes and diaper on, but that should still be a small gain from her 27 pounds.

I'm edgy an nervous about Jan 30th, when they will knock her out for her MRI. I have a feeling pulmonary is going to want to get in on this and do a bronchoscopy at the same time. -Sarah

Dec 12, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Meggy has cardio appt. so I will post later, but wanted to give u hugs.
Dec 12, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Sarah, I am so sorry that this is not improving her condition. Seems to be helping but only masking what is really going on. I hope that she gets better soon. Hugs to you and you are in my thoughts and prayers. -Amanda
Dec 12, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Sarah,

I am sorry that Quinn is having such a hard time. I hope that they can figure out what is going on and soon.

When was her last sleep study? Have they looked into genetics and metabolics for her.

Has she seen a sleep specialist? Has she ever been evaluated for Mitochondrial disorder.? Sorry for so many questions. I really wish I had a way to help all of our kiddos.

Dec 12, 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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Oh Engi, I forget that there are so many who haven't followed Quinn's story. We have done all of the above for Quinn. Currently she is seeing a metabolic/mitochondiral doctor who says that he will try to figure her out but admits that he doesn't know how much help he will be because of how untypical she is. it's just been a constant moving road block with Quinn.
Dec 12, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Darn, I'm sorry to hear this. I hate it that you have to wait so long to see the pulmonologist. Good for you for pushing so hard for the o2 in the first place. Imagine how bad off she would have been without you forcing the issue. ((((big hugs))))
Check with your
doctor first!