Posted By Posting
Jun 27, 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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A Night In the ER and Hopefully Escaping Admission!!!
Well, I went to the "bandaid station" with Quinn today. We call our tiny ER the "bandaid station" because they really don't ever diagnose anything or ever have a clue about anything really. I only went there because:::: ready, this is long... Quinn had a nurse come out to our home earlier today for a recheck on her. I mentioned that her residuals were really pink. She had me pull them up for her and she told me that I should take her to the ER. So... more contemplating, more contemplating, more contemplating... I call up the GI nurses, who tell m to take her in, I call up pedi nurses, who tell me to take her in. UGH!!! So, it was a while later and at the end of the night I decided to take her in. She had only had one can feed all day because she is only tolerating 20ml/hr right now. She diarrheaed a few times too. She was at least peeing!!! Her spirits, nothing wrong, still up and romping around with the best of 'em. So there couldn't have been anything really seriously wrong with her, right? Took her in, they told me right away to go to Loma Linda because she was too complex. I tell them "whoa, wait a minute! I am not wasting that much gas and time if there is really nothing they can do for her." So I asked them to at least culture her residuals to see if it is really blood. So, we pull her residuals, and out comes some red stuff. They cultured it and it WAS blood!!! So they decided to prick her five times because they couldn't find a vein, they couldn't even get 5cc's of blood out of the vein they pricked. That concerned me, but I guess I am the only one it concerned. They couldn't draw enough blood from a vein that they successfully cathed???? hmmmm.... So they couldn't even run a CBC or anything like that to check for infection and blood counts. then, they decide that she was dehydrated and start running an IV, did an xray on her tummy and tell me that it was normal. i'm not expert at reading xrays, but I was looking over their shoulders and it didn't look normal to me! One of her lungs was clear while the other was cloudy and her tummy looked weird. BUT, whateva, I guess if it was something serious they would have done something. I have never been trained at xrays so who knows what in the heck I saw? They sent us home. i called the GI doctor on call who spoke to me about all this and she told me that given all this stuff, she should be seen down there, at the children's hospital. I'm still up and down on that! I hate that ER. they don't page any of the doctors, they ahve the ER staff and they will take one look at her and say, she should not be here. So... I took her back inside and checked her residuals and I saw no blood and she peed. So the doctor told me to at least bring her in tomorrow to get scoped and see where the blood is coming from. UGH!!! You have to be kidding me!!!!! She was also saying that given her slow motility right now, she may need a j-tube or even be TPN but that she couldn't know for sure until she is officially evaluated by a pediatric staff. So, that is where we sit right now. This would be super duper easy if she was acting sick, but NO! Quinn is bouncing around like normal. She still has a fever that comes and goes. Literally, one minute she can be normal and the next minute it is 102 or something. So, that is a day in the life of us. SO AGGRAVATING!!! Watch me take her in tomorrow and she will have nothing wrong with her. HE HE! It will happen now. Her diarrhea has slowed a ton, but it could be because she has not really had any food today either. -Sarah
Jun 27, 2008
mommy2628
I am praying that they do find out what is going on with Quinn. Keep us updated. Also your ER sounds like ours. 2 Hrs to see a 2 mo old gasping for air.... Need I say more. Thinking of you guys all the time. Carla
Jun 27, 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!
Well, what can I say. I hope nothing is wrong, but I know you want some kind of answer right?
Jun 27, 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
I hope it passes. Like I said when we talked last night...I really think it's rotovirus, Jedd was the same way.
Jun 27, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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Ugh. I hope you get some answers. Keep us posted on what they say.
Jun 27, 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
Ugh! How frustrating. I hope it passes quickly. Cristy
Jun 27, 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.
omg when chris read me your message last night, that was the first thing i thought, blood... sorry i couldn't text back last night, trying to get audrey to eat...

i hope you do take her in and get her scoped if just for piece of mind. but i know you probably won't, just like me with emi haha this situation sound familiar? two instance of blood in stool and i never took her to All children's ER either. i mean i am not around Q or anything and we know our girls super well but if the GI is saying J tube scope or TPN- sounds like a red flag! call if you need anything!
Jun 27, 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).
I hope she gets better soon.
Jun 27, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Sarah-We are thinking and praying for you guys. Please take seriously if she gets any worse. Take her to Loma Linda. Maybe you should go today while there are still GIS and peds available for consult. Rotovirus can kill young children if that is what you think she has. Please keep us posted. We are worried about you two.
Jun 27, 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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Well, we are on our way down to Loma Linda. I pulled more blood out of her stomach today. Just a tinge though. I just want her to be ok. She is still acting really, really normally. She has been getting hot flashes, where it feels like she is having fever, but it goes away. But so far, she has not had any diarrhea. I checked her residuals and it looks like it's because it's in her stomach. UGH!!! Wish us luck that they will be willing to figure it out and not base everything on the way she looks and it acting. -Sarah
Jun 27, 2008
amber f
Thinking of you! Sorry again I have nothing to say but want you know I am thinking of you and following your posts. (((HUGS)))
Jun 27, 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.
oh my goodness. i sure hope that they figure out what is going on! that little girl has such spirits in her! she's amazing.
Jun 27, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Thinking of you guys. Can't wait to hear an update. praying for good news. Sorry it is so rough for you guys.
Check with your
doctor first!