|Aug 19, 2008|
HEY I'M BAAAACKHEY EVERYONE, SORRY LONGTIME NO CHAT... WELL LETS GET TO THE UPDATE SHALL WE... I BECAME A SAHM ON 7/27/08 ON MY BIRTHDAY OF COURSE, MY MOM AND GMOM WHO I CAREGAVE FOR AND WHO WERE GIVING ME FREE CHILDCARE, DECIDED THAT THEY DIDNT WANT TO CARE GIVE FOR FREE ANYMORE (EVENTHOUGH THEY HAD FREE ROOM AND BOARD AND FOOD AND EVERYTHING ELSE) AND WENT TO SPONGE OFF OF MY SISTER FOR THE REST OF THEIR LIVES...LEFT ME IN A BAD PREDICAMENT OF HAVING NO ONE TO CARE FOR MY SICK LO OR MY 2YR OLD, SO I BECAME A SAHM. WE ARE CURRENTLY AT PHOENIX CHILDREN'S HOSPITAL... MY LO FINALLY HAD HER NG TUBE REMOVED AND HAD THE NISSEN AND MIC-KEY BUTTON INSTALLED YESTERDAY. SHE IS IN HER OWN ROOM, AND THANK GOD FOR THE RONALD MCDONALD HOUSE... I HAVE A HOME AWAY FROM HOME. THIS IS OUR SECOND NIGHT HERE, I AM ASSUMING I WILL BE HERE ANOTHER FEW DAYS. THANKS TO THE MOMS WHO GAVE ME ADVISE MONTHS AGO, MY DAUGHTER HAS REGLUAR MORPHINE BEING PUMPED INTO HER SO SHE IS IN NO PAIN.... LADIES.. THIS G TUBE THING IS REALLY SCARY TO LOOK AT. I BOUGHT SOME OF THOSE TUMMY TUNNELS ON LINE YESTERDAY SO I CAN START MAKING CLOTHING THAT WILL ACCOMMODATE HER GTUBE. AND THANKS TO JESSICA... I BELIEVE IT AS YOU THAT GAVE ME THE ADVICE THAT WE SHOULD GO TO CALIFORNIA? AS OF THE NEW YEAR WE ARE MOVING TO MY IN LAWS IN SAN BERNANDINO COUNTY., SO HER NEW CHILDREN'S HOSPITAL WILL BE LOMA LINDA... WELL THATS IT FOR NOW... I WILL KEEP YOU UPDATED!
|Aug 19, 2008|
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!
|Yay! Sounds like you're in a good place--even though it's a little scary. I pray everything works out well for you and your lo.|
|Aug 19, 2008|
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
|Glad things are going so well. I hope the move does great for you. We love iving near our child. hosp. We are about 15mins. 10 if you are in a big rush to get to the ER....LOL |
A G is not all that scary I promise!!!! LOL Make sure they show you how to vent and that you get to do it before you leave so
that you are comfortable with the tube. I am one of those people who learn better if I do it.
Did y ou get a long tube or did you get a straight button insertion???? Feel free to send any ????? to me through Myspace as well.
|Aug 19, 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
|Shay, we live in San Bernardino County! Quinn goes to Loma Linda. It's SUPPOSE to be a good hospital. It was up until recently for Quinn. I don't know if it is just because Quinn is both very complicated and very uncomplicated if that makes any sense at all. But we are getting second opinions in San Diego and are willing to make the four hour trip out there if they can help us out any further with Quinn's care. She has been seen in Loma Linda for almost three years. Loma Linda has a Ronald McDonald house too, but i imgaine if you will be in san bernardino, you will not need it since you will be very close by. How CRAZY! But thanks for the update. I'm so sorry that it has come to this, but hopefully your little one will be able to come home soon and will finally start feeling better. -Sarah|
|Aug 20, 2008|
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'm glad things are going well after surgery. Hope she is better and out soon.||Check with your