Posted By Posting
Dec 09, 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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Doc Put her On Continuous O2
Today, I took Quinn to her normal therapy session and asked them to check her pulse ox. There, it had dropped down to 90%. During the session the therapist said that Quinn appeared to be lethargic, very floppy and pale. I called the pulm again and this time the nurse answered she told me to talk to the pediatrician again. They wanted to work us in this afternoon, but it would take us two and a half hours to get there and if all they were gonna do was check her pulse ox and say, yep, put her on o2, that would be unnecessary. So she told me to call the pediatrician and do as he said.

So I did and he told me to put her on 1/2 a liter, which i did in therapy and chcked her sats and the went back up to 99. he wants her on that continuously until thursday when we will go back in to recheck her. If her sats are still low on thursday, we are to see the pulmonologist in one week.

As if that isn't enough, i got a call from MRI to schedule her appointment and EEG and they told me that because of her respiratory, she will need general anesthesia (which the neuro told me would likely happen) and that she would need to be admitted for 24 hours after that. her EEG was suppose to be an at home EEG, but since she will need to be admitted, they are gonna do it at the hospital. This will take place January 30th.

-Sarah

Dec 09, 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'm glad she is on oxygen in the meantime, Sarah. Girl, you must be so stinking frustrated with her docs!! Considering the hoops you had to jump through to get her O2 for when she is asleep....now this. You know Quinn so well. At least they will be following her closely and get you into the pulmo asap if need be. I always pray for Quinn and you. Good luck next month if I don't get the chance to say it before then. HUGS
Dec 10, 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
I really hope things get better. I hope this helps with her o2 and helps with the lethargy and over all well being. I hate that you are having to deal with all of this and hope that the pulmo has some insight for you next week.

I have some questions for you about childcare. If you could email me sometime that would be great. amandawhite@clevelandtigers.com

that is my work email and I check it most often. We are dealing with a lot of things right now and may have to look for other child care. I live in a small town where it is hard to come by and with the apnea, eppilepsy, reflux, and severe food allergies I'm not sure who would take her even if I would trust it. I mean she has allergic reactions to pumpkins just being in the house. We don't know about peanuts but the fact that she is still formula only and has special diet needs is big. I am just wondering what you have found. I know that it is a different state and everything else but I need some experiences to fall back on. Sorry, to steal your thread. I hope to hear from you soon. -Amanda

Dec 10, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
oh man, i'm glad that she is getting the o2 though. even if her stats don't stay low i would still see the pulm. sorry you can't do the at home eeg but i'm glad they are taking her into extra consideration and being extra cautious. *hugs*
Dec 11, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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hi sarah, I haven't been to pager in awhile and am sad to see this update. I was thinking about Quinn today bc I saw a little girl at target who could have been her twin!
Check with your
doctor first!