Posted By Posting
Jul 01, 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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Going home
Quinn is being discharged as we speak. No answers. Just a few bandaids. I told them that I was sick of coming back here and they said that she is just chronically sick and it's unfortunate but she will probably have to be hospitalized but right now she is stable for discharge. They said that they are not going to worry about the desaturations (because she had some last night) because they were brief and self resolved so, go back to normal living, which is what I intend on doing. I'm happy to be going home. -Sarah
Jul 01, 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!
What does "probably have to be hospitalized" mean? Do they mean again soon? I'm sorry Sarah, it doesn't sound like you got much out of this visit. Hugs!
Jul 01, 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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I wish you were going home with some solid answers...ugh. (((HUGS))) J
Jul 01, 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'm glad you're going home! Hope Quinn is feeling better.
Jul 01, 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
Glad that you'll be home, but sad that you still don't have any answers. Hang in there. ***big hugs***
Jul 01, 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
I just read your earlier post. Sorry you have had such a time. I'm glad your getting to go home, but sorry you didn't get any new answers. I was told that it ddidn't matter how low Cooper's sats were going (in to the 30s) but that he was recovering quickly and on his own. But man, it is still hard not to worry about it. I hope she is well for a nice long time this time and you can have some fun! Thinking of you always.
Jul 02, 2008
mommy2628
Sarah and Quinn---- GREAT BIG (((HUGS))) and Love from NC. I am so sorry that you have to face this especially alone but the Lord surely couldn't have gave Quinn a more precious Mom. Hang in there and remember I am thinking and praying for you all the time. I so glad you are going home also. I will try to call you in the next few days to check on you guys pertaining I can get a minute from the sickness. UGH!!
Jul 02, 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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I decided that I am going to switch hospitals. I have had it with such lack of communication. They didn't even feel that it was worth an investigation to see where the bleeding in her tummy was coming from. We wasted our whole time there. They don't feel that it is necessary to look into her dehydration. I think it is odd that she felt no pain with the bleed in her stomach or that she felt no pain with her tummy being full to capacity and retching. Most kids would feel uncomfortable and in a ton of pain. Maybe this is why she looks so good? it doesn't matter because she is fine, right? So, next time she bleeds in her stomach, what, I'm not supposed to worry about it at all??? Guess not. Then they gave me the discharge orders and said that the doc wants me to come back in three to four week for a j-tube (a tube that goes directly inter her intestines. WHAT??? NOBODY explained this to me. I really don't want to go back. I don't feel like they have the best interest of my child. Maybe, if we could figure out why, she won't need to have all this stuff done to her. :( I just want to give up. -Sarah
Jul 02, 2008
amber f
Sarah I'm so sorry that they have no answers for you. I would switch hospitals until you find some answers. How frustrating. (((HUGS)))
Jul 02, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Maybe a fresh perspective from a new hospital/DR might be the best idea. I am sorry you are having to deal with all of this and that Quinn is having to go through all of this. I don't understand why they didn't explain the j-tube reasoning. ??? I would want an explanation and plan before going down that road for sure.
Check with your
doctor first!