Posted By Posting
Dec 25, 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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Crazy Christmas (Quinn's respiratory)
Yesterday was Christmas Eve. Quinn was very pale again. I had to turn up her oxygen to 1.5 liters by morning. Went to eat dinner with the fam and they all said that I should take her to the local hospital just to check her oxygen saturtions. I had to turn her oxygen up to 2 liters by that time. Went to the hospital just to make sure she was sitting comfortable at 2 Liters and she was. for three spot checks, she was between 92-97%.

on the other hand. it is unknown why she is having such low saturations. Today, she seemed ok on the 2liters with intermittent palish/blue episodes. Otherwise she looks good on the 2Liters. However, it's NOT ok that i have had to turn her oxygen up from 1/2 a liter to two liters in a matter of days and NOT have an answer as to why this is happening.

I called the on call pedi pulmonologist at Loma Linda and they just said that as long as she is ok on 2liters that she will be fine and to just keep turning it up as I feel necessary until she is either having severe issues breathing or until i can't turn it up any longer. She said otherwise to just wait to see the pulmonologist on the 6th for our scheduled appointment.

I dunno. everybody that i have talked to has told me to just take her in to the hospital, but i don't want to waste my time and gas if all the yare going to do is tell me the same crap they told me on the phone.

in my honest and personal opinion, i think this is just another symptom of whatever is going wrong in her body. Whatever "unknown disease" is taking control. so in my personal opinion and based on the history we have had with these doctors, they won't be able to do anything for her anyways past what I am already doing for her at home.

I rarely ever ask for this but am ever so greatful for all of you who do, but please, keep Quinn in your prayers, either so she can get over this new hurdle or so they can figure out once and for all what is going on with her. Thank you. Merry Christmas. -Sarah

Dec 25, 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!
I agree with you Sarah. Unless it's a "real emergency" they will prob just keep telling you to see what they say on the 6th. I can't imagine how long that is going to seem. I know nothing about oxygen levels and all but it would also scare me to have to keep increasing her oxygen. I will continue to pray that it doesn't get worse before the 6th and that they will figure out what is wrong. Hugs!
Dec 25, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Hello! I am sorry to hear that Quinn is not doing well. Has she ever had a lung biopsy? Bronchoscopy? Have they checked to see if she has enough surfactant or if her alveoli expand properly? Just a couple of thoughts. I am sure you have researched every avenue. Good luck with the pulmonologist on the 6th, I hope s/he will have some answers for you.
Dec 25, 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 has not had any work up done on her lungs other than a sleep study. I am almost positive that the doctor will order something for her at our next appointment. it would be convenient and possibly save us some complications if he would order a bronchoscopy for the 30th of January while they are putting her under general for her MRI. I imagine i will have more solid answers on the 6th... until then, i hope she makes it that long without needing the hospital.
Dec 26, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I will definitely add you and Quinn to my prayer list.
Dec 26, 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. I know that you have talked about mitochondrial disease before but has she ever been diagnosed? With A's Raynoed's diagnosis, the latest among so many others, the ped and I are thinking that it could be an issue for her. As I was doing some research I ran across a website called haileyswish.org

It had a sad story but it also had a doctor's name that is in CA that seemed to be somewhat of an expert. I really pray that Quinn gets better and that they figure out what is going on. The uncertainty is terrible.

Dec 27, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
I will indeed keep Quinn in my prayers. I cannot believe how much you both have faced..You really amaze me..I often read your posts but I have no input because the topics are usually way out of my experience level .. I have learned a lot from reading your updates and advice to others. I often send you good vibes and warm thoughts !! Happy holidays and hopes that folks can figure out what is going on with your little friend!
Check with your
doctor first!