Posted By Posting
Jul 21, 2008
shay8666
Shannon Gilmore Mother of Verdayne
On reglen 1ml 3xdaily, Omeprazole solution 4ml 2xdaily, Pulmicort ampules 2.5 2xdaily and albuteral every 4hrs. On NG Tube 30ml of food every hour continuous. Diagnosis: Severe GERD, Tracheomalasia, elongated epigloottis, small lower left luncg bronchiole, Atresia of the Vocal Cords , Chronic Aspiration Pneumonia and Asthma. Hospitalized every month since birth, stays are a minimum of 3 days. Surgical Consultation for GTube and Nissen on 7/23 ENT appoint on 7/24 to look at epiglottis and vocal cords. Also has Hypertonia, severe neck crease and receiving OT, PT and early intervention, SSI and DDD(Dept of Dev Disability) and Medicaid (AHCCCS) Cannot raise tummy of ground with arms cannot roll all the way over, cannot handle tummy time nor can she lay on back for too long. Sitting she is always hunched over in a C shape.
LADIES with babies who had the G Tube and Nissen please help me out....
We lezve wednesday for the 3hr drive to Phoenix Children's Hospital... for my lo's surgical consultation... Can any of you ladies tell me what I should expect from the surgical consult and what kind of questions I should ask, since you have already gone through this.... also, clothing... is she required to wear special clothing ? and where can I get it? I found out it will me a MICKEY? how long will she be in the hospital having both procedures done... ?
Jul 21, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
(hug) Have you looked at the parent-2-parent boards? They have a whole area for g-tube info.
Jul 21, 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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Hello. I hope that Verdayne does well for the procedure. The consult will not be much. The doctor will have a look at her anatomy, he will likely have all the test results from what was wrong with her and if not, then i am thinking you should bring them. He will tell you what is likely to come of the surgery. I am not sure whether or not it will be an open nissen or laproscopic. With lap nissens, the recovery time will not be as long and hard. it will be very difficult at first. Because she is going to have both the nissen and g-tube at the same time, her recovery might be a little harder. It changes the anatomy of the stomach. Some kids have issues with retching, but it's a bridge to cross later. When she comes out of surgery, she will have tubes and wires all over her body. If it is open, sometimes they keep them on the vent for a little while, but it is unlikely. As for a list of questions, I have a ton that i asked the doctor. I'll have to find the list and post it here. I recommend going on p2p as well. I'm so sorry that you are faced with this difficult decision. the nissen/g-tube was thebest thing we did for Quinn. She is so much better. -Sarah
Check with your
doctor first!